tag:blogger.com,1999:blog-11248639713299582992024-02-08T05:00:51.155+00:00The ME/CFS GhostLiving with a chronic illness like ME/CFS can make you feel, not to mention look, like an extra from a horror movie. There are days when I'm a ghost haunting the house, or times when I'm a zombie shuffling along. This is my life with ME/CFS.Unknownnoreply@blogger.comBlogger47125tag:blogger.com,1999:blog-1124863971329958299.post-91828898373670579922014-05-01T07:49:00.000+01:002014-05-01T07:51:13.109+01:00What I Found Out in a Day on Twitter<div class="MsoNormal">
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I've had a Twitter account for a while, but haven’t seriously used
it.</span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">However, yesterday I spent my first
full day checking my account and monitoring tweets and this is what I
discovered:</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: large;">Platitudes Really Annoy Me.</span> </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">One of the accounts I follow posts platitudes about how great things are,
positive quotes and is all about the silver lining. I’d seen them before, but to see her send a
new one every few minutes, I was impressed.
Well, by the end of the day I was impressed. I started off the morning thinking “Awww, that’s
nice”. By lunchtime I was a bit fed up
of having my feed jammed with so many uninteresting tweets. By late afternoon I was sick of the fluffy,
well-intentioned nonsense and even went to the person’s profile with every
intention of unfollowing them. But then
I remembered why I had started to follow her in the first place and so I didn't hit
the button. Now, it is evening and all
cynicism aside, I am seriously impressed.
That account tweets every few minutes all day, every day
–impressive. Even more impressive? Who knew there were that many platitudes in
the world and so far I haven’t seen a single one repeated. Also, every now and then they’re broken up by
a beautiful calming image of a waterfall or some other peaceful landscape or a
message of gratitude and thankfulness. This really isn't my kind of thing, but as there are 55,000 people following that account, there sure are a lot of people who enjoy it, so more power to them.<o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: large;">How Quickly You Learn Breaking News.</span><o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I found out Bob Hoskins had died even before any of the news
sites, like the BBC had a chance to tweet about it or before any one of my
Facebook friends had time to post one of those typical “Bob Hoskins Dead. So
sad. RIP” messages. This is truly
astonishing for someone like me (the finding out so soon part...although Hoskins' death was very sad news). When Nelson Mandela died I found
out when I visited my sister and found a newspaper with a front page article
about his funeral. The newspaper was
four days old. If my sister had had her
recycling pick up before that visit, I may have been oblivious to that news
even now. <o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: large;">How Amusing and Bewildering the Topics which Trend Can Be</span><o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">As the news about Bob Hoskins broke, of course his name shot
to the top of the ‘Trends’ list, but it was closely followed by ‘Who Framed
Roger Rabbit’. Seriously? It was a good hour before 'The Long Good
Friday' showed up and I’m still waiting for 'Mona Lisa'. I love Bob Hoskins but can't say I ever thought
much of that bloody Roger Rabbit movie! Anyway, I always preferred
his normal accent than to a put on American one.<o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: large;">People Will Keep Tweeting About Nigel Farage and UKIP…</span><o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">…even when they’re complaining about how much attention and
coverage these two topics are garnering.
I believe that is a little thing we call irony out these ways.<o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: large;">It Can Be Quite Fun and Easy To Do!</span><o:p></o:p></span></div>
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I don’t know if I have it in me to be on Twitter all the
time, not even just observing others, but I did enjoy it and found it is much
easier to do than I had ever anticipated.
But I also realised that I am not ready to use Twitter via my
phone. I used the app for a few seconds
before I had a full on panic attack because I was getting notifications and
couldn't figure out how to sign out of it.
I calmed down and did manage to do just that and I think it may be a
while before I venture back to Twitter via my phone.</span><br />
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<o:p></o:p></div>
Unknownnoreply@blogger.com0London, UK51.508515 -0.1254871999999522851.192402 -0.77093419999995227 51.824628000000004 0.51995980000004771tag:blogger.com,1999:blog-1124863971329958299.post-24665785213298234652014-04-30T08:00:00.000+01:002014-04-30T08:01:44.364+01:00More ME Soldiers Down, But We Keep Fighting<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeHy9PPVzK8Jt30pLMbDVsPV-Tj-HsaSx-dSTHhe4rsKHLlYd5Hqx_fQcgwMEzOknG-P4f4sIYTRB4KHbcTdChnBfr4JvgkuhZv3Son6uZBpPgBmjTOMmiTD28hYcKCztrRbigReBw5Wiz/s1600/Courage.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeHy9PPVzK8Jt30pLMbDVsPV-Tj-HsaSx-dSTHhe4rsKHLlYd5Hqx_fQcgwMEzOknG-P4f4sIYTRB4KHbcTdChnBfr4JvgkuhZv3Son6uZBpPgBmjTOMmiTD28hYcKCztrRbigReBw5Wiz/s1600/Courage.png" height="320" width="213" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Yesterday was a bad day…a very bad. It started off quite well, but by the time I
got into bed yesterday evening I was physically, mentally and emotionally
exhausted. I just felt like I had been
through the washing machine of life and had come out limp and wrung out. So why was it so bad? </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<span style="font-family: Georgia, 'Times New Roman', serif;">Well, I think I overdosed on ME and ME'ers yesterday.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">Yep, it is possible to do that.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">I've been absent from the ME scene for much
of the past few months, but I have been writing a book (ME related and more
about that in the future) and as May is almost upon us, I wanted to write more
articles online about ME.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">Every May I
try to write as many posts as possible to help raise awareness of this illness.</span><br />
<a name='more'></a><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I logged into my Twitter account and had a look around at what
my fellow ME'ers were up to and what they were talking about. That's when I heard the horrendous news that
Irene Romano, a very sweet and lovely lady had died in February. I knew Irene because I had started following
her on Twitter after I discovered her blog <a href="http://laughingfrommysickbed.blogspot.co.uk/" target="_blank">Laughing from My Sick Bed</a>. She had not posted since the end of January, and in that post she had mentioned she had a chest infection, so I just figured she was too ill to write. After all, I've been known to take extended
breaks from writing when my symptoms flare up or I get an infection. Alas, that was not the case. There was such abject sorrow in the tweets
responding to the dreadful news of her death.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I went back and read her last post again, and it affected me
in a way I could not have imagined. I
felt blow after blow to my heart as I read about how she was looking forward to
the Oscars, along with her movie-obsessed family, and her joy at the birth of
her grandson. He loved the sound of her
voice and it made him stop crying. He'll
never hear that voice again and she never got to have the simple pleasure of
enjoying the award ceremony show with her family. It is just so sad.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">As fate would have it, yesterday was also the day that I came
across <a href="http://www.dailymail.co.uk/news/article-2613308/Man-crippled-ME-30-years-killed-using-drugs-recipe-suicide-handbook-left-notes-warning-fire-crew-house.html" rel="nofollow" target="_blank">an article about Jonathan Hales</a> who, after suffering with Severe ME for
30 years, had committed suicide. I don't
like the Daily Mail at all (understatement of the century), and never expect them to do news stories any justice; needless to say they did not disappoint in that regard with this article either. I wish the story had covered more about the
horrors of the illness that lead to this man feeling he had no option but to
take his life. Instead, it leaves the
reader with more of a notion that he had mental problems, and that he had been
offered psychiatric help, but had refused it.
Indeed, the article which gives details of the inquest into this death
states that the mental health authorities had tried to help him and had even showed
up at his house, but he did not let them in. "'Jonathan continued to
report his view that mental health services were of no help to his situation
and physical suffering,' said the report." Can you blame him? Sophia Mirza
anyone? Karina Hansen? I did agree with the final part where his
mother talks about the need for residential centres for people like Jonathan
and other Severe ME'ers, like there are for people who suffer from other severe
illnesses. The point that this article
seemed to almost totally miss is that this man was desperately ill, and in pain
and totally isolated. He had suffered
for 30 years and it sounds like he had an understanding doctor, but there was
no relief in sight for him. How can we
allow people like him to suffer in this way?<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">By the time I had finished reading about Jonathan Hales, the
ache in my chest from Irene's news was beginning to morph into something
warmer, hotter even, as I felt my anger and outrage begin to stir. I should have just stopped there; called it a
day and got on with something else. But
I didn't, of course I didn't. I saw a
tweet from someone enquiring about people's experiences with Homeopathy. I responded briefly and was proud of myself
for keeping the venom out of my tweet (I will rant about Homeopathy another
time) but I noticed that the tweeter also had an ME blog so I took a peek. I won't mention the blog, because it is not
fair to attack how this person wants to deal with her illness. It is a nightmare getting from day to day at
times, and if sufferers can find solace and peace in whatever way, that is
their right. But the blog offended
me. The blogger has been ill since 2011,
so I know the stage she is at. I became
ill in 2001 and didn't get my shit together until 5 years after that, so I can
understand, but still, the types of things she is writing do not help ME
sufferers. In just the few articles I
read, she perpetuates the myth that GET (Graded Exercise Therapy) is helpful,
that people can fully recover from ME and that the Gupta Programme is even
remotely helpful. I admire the fact that
she has started a blog, but rather than making absolute proclamations about
things she knows so very little about and that help no-one, I would hope that
she would instead use her blog as a record of her own journey and growth. <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">How can we lament the wounds inflicted on sufferers with the
things that people say about ME, when we have people who claim to have ME
adding salt to those very wounds? If
sufferers like that blogger think what they have can be improved with CBT, NLP
and exercise, then how can they possibly have ME? She is quite vitriolic in her response to
people criticising her for just this and wonders at how people can waste their
limited energy and health on arguing. We
fight against these types of fallacies because our very lives depend on
it. If we do not raise our voices
against the insane labelling and ridiculous notions, by declaring that we have
a real illness, who will do it for us?<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">So that was the final nail in my coffin yesterday and I felt
defeated and even wondered why we bother.
We have lost soldiers and we have turncoats within our very ranks, and I
was overwhelmed with the sense of hopelessness.
But that was yesterday. This is
today. I may be criticised for my
references to this being a war. But at
its very core, that is what it is and we fight.
Every day we fight. Instead of a
trench in a battlefield, we may be confined to our beds, and the weapons we use
are not of the bullet and gun variety, but our laptops make us powerful enough.<o:p></o:p></span></div>
<br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">My respect and admiration for all those ME warriors who
continue to fight the injustices we face in whatever way they can.</span><o:p></o:p></div>
Unknownnoreply@blogger.com2London, UK51.508515 -0.1254871999999522851.192402 -0.77093419999995227 51.824628000000004 0.51995980000004771tag:blogger.com,1999:blog-1124863971329958299.post-79468587321825864132014-02-18T08:04:00.000+00:002014-02-18T08:04:15.648+00:00ME/CFS and SAD<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Yesterday I took part in a HuffPost Live segment about
Seasonal Affective Disorder (SAD). I
suffer from the Summer Blues, rather than Winter SAD and I wrote an article
about this last year (<a href="http://www.squidoo.com/melting-to-death-in-the-sun" target="_blank"><b><i>Melting to Death in the Sun – Life as a Reverse SAD Sufferer</i></b></a>). My ME/CFS symptoms have been really bad
lately, thanks to a recent cold and with lots happening in my personal life (I
will be moving house this year – HELP!) so I have to admit that when I received
the invitation from the HuffPost Live segment producer, I really did not want
to do it. <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">On any given day, I feel much more comfortable with the
written word rather than the spoken. But
my recent brain fog had me worried that I would not be able to keep up with the
conversation let alone reply in a coherent manner. Also, I look and feel so ill, that I didn’t
want to be seen on a video. So I was all
set to say “Thanks, but no thanks” but I thought about the reasons I wrote
about SAD and it was for the same reasons I write about ME/CFS; to raise
awareness and help sufferers know they are not alone. So I agreed to do it.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The segment had not been on for long before I realised that
I was probably the worst example they could have picked as a Summer SAD
sufferer, because I also suffer from ME.
The two complicate each other and I would not have the same options
available to me as a standard SAD sufferer.
The doctor who took part in the segment also made some suggestions about
what Summer SAD sufferers could do, but the painkillers and meds that I take to
help my ME symptoms prevent me from trying these out.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">So, in hindsight, I fear I came across as this weird freak
that abhors the sun and doesn’t really try to get any help, when honestly the
complications come about because of my ME.
You can watch the HuffPost Live segment <b><i><a href="http://live.huffingtonpost.com/r/segment/seasonal-affective-disorder-in-full-effect/52fe771178c90a30300003c6" target="_blank">here</a></i></b> <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Do you have ME/CFS and also suffer from SAD? Do you find that one makes the other worse or
that some of the treatment options are not available to you because of other
meds and symptoms?<o:p></o:p></span></div>
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<br /></div>
Unknownnoreply@blogger.com2London, UK51.508515 -0.1254871999999522851.192402 -0.77093419999995227 51.824628000000004 0.51995980000004771tag:blogger.com,1999:blog-1124863971329958299.post-82453908120003638192013-11-09T16:59:00.000+00:002013-11-09T16:59:21.319+00:00I Just Don't Care And That Is So Great!<div style="background: white; line-height: 13.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 18.0pt;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrXUTKD1xLM-FFOSbOz_t5B464vwsW8tGK0dIShKxPOqmiST4Dp1ngcFZyv54PX21ua3hpqA5ma40itUF8Ye6j-pnCuABQhmCDhcTx2XSBYKruJ_GoslvkL_NUV6rfCBcpC5zI86SLKfiz/s1600/Housework+quote.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrXUTKD1xLM-FFOSbOz_t5B464vwsW8tGK0dIShKxPOqmiST4Dp1ngcFZyv54PX21ua3hpqA5ma40itUF8Ye6j-pnCuABQhmCDhcTx2XSBYKruJ_GoslvkL_NUV6rfCBcpC5zI86SLKfiz/s320/Housework+quote.png" width="240" /></a></div>
<span style="font-family: Verdana, sans-serif;">I've just
spent the last half hour feeling ridiculously angry over insensitive comments
from my partner, but that all changed a few minutes ago to real pride over how
much I have changed. My other half has
been on at me to sort out a pile of papers and letters on the dining table. He tidied and file the worst of the mess, so
what is left is mine (or so he claims).
My ire started this morning when he once again pointed out the
pile. Then I received a delivery of
clothes and shoes; as I don’t visit shops, I order everything online, try it on
then return what I don't like or doesn't fit.
Somehow, in the process of doing all that, he’s either gotten in a bad
mood because there was stuff all over the flat (we live in a shoebox) or
because I wasn't working on business planning (my idea) as we were meant to be
doing. When he saw the 2 large bags of
returns he started to interrogate me on when they would be collected and if I
could at least hide them away somewhere.
He is obviously in a shitty mood about something; but I appreciate
stupid, insensitive comments about as much as the next person. Especially as this week has been bad with a visit
to the doctor’s, new meds and around 4hrs sleep each night.<o:p></o:p></span></div>
<div style="background: white; line-height: 13.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 18.0pt;">
<span style="font-family: Verdana, sans-serif;">The
realisation that made me feel so much better was this; not only does the pile
of papers on the table not bother me at all, but neither do the dishes in the
kitchen or other household chores that are waiting for me to have a good day. At one time I would have spiraled into deep
depression at not being able to tidy up or killed myself trying to do it. But not now; if I can't do it, I can't do
it. The moody man’s passive aggressive
behaviour annoyed me and his insensitivity, but he’s also has a bad week, and
we’re all allowed an off day. He is not
ignoring my illness or pretending I'm not ill, which may have been the kinds of
thoughts I would have once had as I remembered all the people who actually have
done that to me. </span></div>
<div style="background: white; line-height: 13.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 18.0pt;">
<span style="font-family: Verdana, sans-serif;">I don't
know exactly when I changed these aspects of myself, but I'm glad I have
because ultimately it makes life easier for me.
There are plenty of genuine hardships and even tragedies when you have
ME, yet in the not so distant past I have been guilty of reacting extremely
badly to things that perhaps are not as important or as serious as I have made
them. I've now started to think about
the more specific things that did bother me but now do not and I think I may
write about those more in depth in the next few posts.</span><span style="font-family: Verdana, sans-serif; font-size: 11pt;"><o:p></o:p></span></div>
Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195100899999986 -0.7652713999999704 51.827326899999989 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-20226534112833002102013-10-08T14:07:00.000+01:002013-10-08T14:07:18.619+01:00Have You Been Cruel to An Ill Person?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj71Z5Ko24jAxHyQjfYt38uc8Il60hTkNz8eiejdYyFPKVZ-JuVqw_HWsrztYMFDV4V3ZkcXkAlwdY7j8T-cSxPv82lS4VGV5oW6GUOjX18ZBKVrvN4lZZYH4prYiw_4oZ3CFqTyCU9lYZ8/s1600/Sick+Day.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj71Z5Ko24jAxHyQjfYt38uc8Il60hTkNz8eiejdYyFPKVZ-JuVqw_HWsrztYMFDV4V3ZkcXkAlwdY7j8T-cSxPv82lS4VGV5oW6GUOjX18ZBKVrvN4lZZYH4prYiw_4oZ3CFqTyCU9lYZ8/s1600/Sick+Day.jpg" /></a></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 115%;">Most people
would immediately answer “Never!” when asked if they have been cruel to an ill
person, but the truth is that we have probably all done so at one time or
another and we didn't even know it.</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">I've
been ill for almost twelve years and it was only when I ended up on the
receiving end, did I even stop to think about all the times I may have said and
done something inadvertently cruel to other ill people.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">Most chronic
illnesses are invisible. If you look at
my pic, or even look at me, you can't tell that I am ill. This is not just true for ME sufferers as the
same goes for people with Alzheimer's, Cancer, Fibromyalgia, Lupus and dozens
upon dozens of other illnesses. This may
seem like a good thing, but it actually makes life harder for people with an
invisible illness or disability because they not only have to deal with the
symptoms of their illness but with the way people treat them. </span></span></div>
<a name='more'></a><span style="font-family: Georgia, Times New Roman, serif;"> <o:p></o:p></span><br />
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;"> </span></span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I'll give
you an example; say you were standing on a crowded train and you saw a heavily
pregnant woman get on the train, but no-one got up to give that woman a
seat.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">So, feeling outraged you quite
forcefully asked the nearest seated person if they could get up and allow the
pregnant woman to sit.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">Seems like the
correct thing to do, right?</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">After all
you are helping the pregnant woman.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">Well,
that person seated was me.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I didn't even
notice the pregnant woman who got on, because I was riddled with pain that was
causing severe nausea.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I had returned to
work after seven years and while I was at work I had experienced a total
relapse.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I actually got up for the
pregnant lady, but only because I was so confused, I didn't even know what I
was doing.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">Luckily I did not have to
stand for too long, but the fact that I did caused me extra pain in my legs,
back and arms for the rest of the week.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">
</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">But what if I had said “No”?</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">If
you asked someone who was well-dressed, healthy looking, with immaculate
make-up, who was obviously coming back from a corporate job to give up their
seat for an elderly or pregnant person and they said "Sorry I’m ill" and even
gave you the name of an illness that you had not heard of, would you believe
them?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">It’s easy to
say "Who cares what others think" or "You should've just stayed seated" but I
know so many people who have problems dealing with others in social settings as
years of illness have broken down their ability to even communicate effectively. Also, especially with an illness like ME
where stressful situations can cause the adrenal gland to go into overdrive
causing further and more serious symptoms, sufferers are hard-wired to take the
path of least resistance. I have a
friend who is forced to take a walking stick with her when she travels to and
from work just to avoid the kinds of situations I described.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">Before we
all start wallowing in guilt over all the people we may have inadvertently
hurt, it is worth remembering that it is not our fault. We
subconsciously take others at face value and make up our minds about them
within seconds. Unless we see a physical
sign of disability or illness, we are not going to consider it. Also, we have in mind that sick people look
sick; they're pale and thin, or
use a walking stick or wheelchair, right?
If they aren't or don't, how ill can they really be?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">The most we
can do is to not take people at face value and understand that not all
illnesses are visible. I once saw a
young woman vomiting outside the train station exit. It was rush hour, but people were just walking
past her. It was a week or two before Christmas,
a time when many people are out at parties and social gatherings and I guess
people just assumed that she had been drinking too much alcohol. I went to her and asked her if she needed any
help, and I waited with her until she was able to phone someone to come and get
her. She had not been drinking, and when
her husband arrived, he said he was taking her straight to the hospital. She may have had appendicitis, or food
poisoning or anything, but no-one helped her.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I think us
ill people are to blame too. We don’t
talk about our illness and the way it affects us enough. It took me over ten years to be able to talk
about my experiences because, like most people, I don’t want to be ill. I don't want to be 'negative', or to admit
that I’m ill, which is often perceived as a weakness. I don't want to have to talk about symptoms
or how much my life sucks. The sad fact
is that the only time society wants to hear about illness is when it is a
positive story about how someone beat their illness and carried on as
usual. Unfortunately, for most ill
people, life is not like that. So it is
hard, but we have to try and educate people.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I’m grateful
for all comments on this topic as it is not an easy one for me to write
about. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 115%;"> </span><span style="line-height: 115%;"> </span></span></div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><br />
<div style="text-align: right;">
<span style="line-height: 18px;"><i><a href="http://www.flickr.com/photos/breatheindigital/4369627924/" target="_blank"><span style="font-family: Georgia, Times New Roman, serif;">Image Credit</span></a></i></span></div>
Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195100899999986 -0.7652713999999704 51.827326899999989 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-34920575720430981242013-09-04T10:37:00.000+01:002013-10-08T14:08:52.233+01:00BBC Inside Out Programme on Sikh Girls Being Groomed by Muslim Men<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">On Monday night I watched the BBC Inside Out programme on
Sikh girls being groomed by Muslim men.
I don’t watch television, but first one cousin sent me a
message to “Watch BBC 1 now”, then another cousin had posted “Check out Inside
Out on BBC 1 now!!!” as her Facebook status and then my dad called me to tell
me that I should watch it. The contact
from my cousin and father were because they were aware I was concerned about a
Sikh friend’s daughter who is a minor and has been involved with a Muslim boy
and there is cause for concern. So, I
found a repeat of the show online.</span></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;"><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">I don’t have any doubts that this type of grooming takes
place; whether it is as pervasive as some of the people interviewed in the show
believe, I cannot say. But coming from
the Sikh community, I honestly believe there is much that it can do to help their daughters if they experience this type of grooming and
from even becoming victims of this in the first place.</span><br />
<a name='more'></a><span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">In all of the stories told during the show, the young
girls (all minors) were approached by boys they believed to be Sikh. These young men showered the girls with
gifts and attention and some sort of petting and sexual contact took
place. The girls were then blackmailed
or drugged and plied with alcohol in order to coerce them to have sex with older men. Now, I know if I had been one of those girls,
coming from the same background as them, that firstly I should not have been
even dating a guy, so no matter what this guy later did to me, I would feel
that my parents would blame the initial contact on me; “Why did you go and
see him?” and I should add here that my parents are extremely liberal compared
to other Sikh parents; for these other girls their fears would be much worse. So from that moment on, my fate was sealed;
it is all my own fault.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">I think Sikh parents in the UK need to understand that
their daughters may want to date and see boys.
They must have an open dialogue about this with their daughters and
place healthy boundaries on what is allowed and not allowed. If they did this, not only would their girls
not feel the need to sneak around behind their backs, putting themselves in
this vulnerable position, but they would have an opportunity to meet the boy
and this would be enough of a deterrent for the groomers. Even if it got to the stage where the boy
then tried to blackmail the girl, she would feel more confident in asking for
help.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">A man who had been part of a group of groomers explained
that they targeted Sikh girls because they would not tell their parents and
even if they did, their parents would not go to the police out of shame. This notion of shame and honour within the
Sikh community is what paints the targets on the backs of these girls in the
first place.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">I was also extremely shocked when they showed that some
girls are shipped abroad by their families.
To be fair, the girl who had been sent to America did say she felt she
was being given another chance at life there; why had she not felt that way
with her family back in the UK? But you
have to wonder how those girls feel, being sent away like a dirty little
secret. I am aware through the experience of
people that I know that some of these young girls can be forced into arranged
marriages with some guy in India who wants to come to the UK and is all for a
quick wedding, or even worse, two other girls I know were sent to relatives in
India when their parents felt their behaviour was unacceptable (truancy, going
out – normal teenage stuff) and those girls were then sexually abused by their
relatives, even though one of the girls was just a minor at that time.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">It is not enough to just point your finger at Muslim men,
or men from any other religious or ethnic group, and paint them as an evil
threat to be avoided. It is our
responsibility to make our children feel secure enough in their interactions
with the opposite sex that they are less vulnerable to being targeted and if
the worst does happen, make them feel secure and comfortable enough to come to
us and tell us they are being abused.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">My worst nightmare is that Sikh parents have watched that
video and have just given their daughters strict warnings to stay away from
boys! I’d hope that they would be able
to discuss the programme with their daughters; perhaps even watch it with their
girls and make them aware that these things can happen and that no matter what
happens, they can come to their parents and tell them anything and the girls do
not have to worry about being dispatched abroad.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">It made me very sad to hear that one couple who did try
to do everything that they could to get the police involved did not receive any
help, but that is a post for another day.
Love your children more than fear of what others will think and say;
after all, the notion of shame and honour is based on these fears.</span></div>
Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195100899999986 -0.7652713999999704 51.827326899999989 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-41497771896892928442013-08-31T10:46:00.000+01:002013-08-31T10:46:38.052+01:00The Bubblews Warning Label: Problems With Payments<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzlKZ4I2wxIKL8o2tEZVG9j8X_hGylRuMaUhXlDjK92QBVI-bgrQ35Svt0hE8rb4i_U_FYrcsvYrOAEwfCkmq73uGI0toSG4wr2jWLNUKCV_dugN5iRRA_tjY3LMSpsP3OFrdCWq0aWyl-/s1600/Writer+Money+Quote.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzlKZ4I2wxIKL8o2tEZVG9j8X_hGylRuMaUhXlDjK92QBVI-bgrQ35Svt0hE8rb4i_U_FYrcsvYrOAEwfCkmq73uGI0toSG4wr2jWLNUKCV_dugN5iRRA_tjY3LMSpsP3OFrdCWq0aWyl-/s320/Writer+Money+Quote.png" width="226" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;">Back in April I wrote a post titled <b><i><a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/04/make-money-with-bubblews-for-doing-no.html" target="_blank">Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog</a></i></b> in which I was raving about Bubblews as a way to make money online. I had been a member for one month then and all seemed great. In fact, things were great there until a few weeks ago. I had made about $200 dollars up until that date and not experienced any problems at all with payments. Then, on 5th August I saw that I had reached the minimum needed to redeem payment so I sent my request through. it is now 31st August and I still have not received payment nor have I received any communication from Bubblews. I had heard that they had delayed payments, so I waited, but today I e-mailed them to enquire about the payment. From what I've heard, I'll be lucky to get a response, but I thought I would go through the motions at least. Here I plan to write what I believe the problems are with Bubblews. It may be that you just write me off as a disgruntled user, complaining after not receiving one payment, but I honestly believe there are bigger problems than that.</span><br />
<br />
<a name='more'></a><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">Bubblews have a list of terms and conditions, but the main eight, as shown on each users' 'Bank' page are:</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUnMQA7BBgCXb5R8fIH2cDHWsL57MEw6_t6A7rsAH-vmctQv1rYUJzBRl5HZsxXRWO6S3w-KQsO56Uattiwkb9aWzbmPwRaxUT91vbKE1qziArytGcw-Ar1Xox-AwwH51tFvsVZqJ4sc7w/s1600/Bubblews+Ts+and+Cs.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUnMQA7BBgCXb5R8fIH2cDHWsL57MEw6_t6A7rsAH-vmctQv1rYUJzBRl5HZsxXRWO6S3w-KQsO56Uattiwkb9aWzbmPwRaxUT91vbKE1qziArytGcw-Ar1Xox-AwwH51tFvsVZqJ4sc7w/s1600/Bubblews+Ts+and+Cs.png" /></a></span></div>
<br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I haven't been online much since May as I've been very unwell, but some time since then number 8 was added. I must admit that some of my posts do have links to other sites and articles I have written, but these were always added to cite sources or provide further information. I have never used Bubblews to drive traffic to my other posts. The only reason I can think for my payment being withheld is that Bubblews believe I have broken rule number 8.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But I have issues with this, these are mainly:</span><br />
<br />
<ol>
<li><span style="font-family: Georgia, Times New Roman, serif;">At no time was I notified that this 8th rule was added. Bubblews should send out an e-mail to all users advising them that there has been a change to the terms and conditions of use as other sites do. It is not enough just to expect people to check; Squidoo and other sites make changes but they always send out e-mails and notifications.</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;">Between my eighth and ninth redemption I only wrote two posts which comply with all of these rules. So if there was a problem, it is with a post I wrote earlier, for which they were happy to pay until they changed the rules.</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;">Even if there was a problem with one, two or even ten of my posts, there is no way that the full $25.06 that I was requesting was earned from those posts, so why withhold the full payment; why not just the earnings from the posts that broke the rules?</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;">They never advise you why payments are withheld, so even if you continue to write posts, you probably won't get paid because the problem still exists.</span></li>
</ol>
<div>
<span style="font-family: Georgia, Times New Roman, serif;">It is not just me that has encountered these kinds of problems; I have met many other writers on Bubblews who are experiencing the same thing. They are good writers, who abide by the rules, but are now not being paid. Like me, many people have given up on Bubblews at the very least until they can sort out these issues. The most worrying thing I heard is that if you complain too much, they just delete your account, but I'm not sure how true that is.</span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;">I still believe that Bubblews is a great idea and a fabulous opportunity for bloggers/writers. But I think they seriously need to get rid of those people that are just there to scam the system, while not penalising those that are genuine writers and raise the quality of the website. They are obviously overwhelmed and do not have a system or the staff in place to deal with everything.</span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;">Anyway, I shall keep write an update as soon as I find out what is happening, but for now, I would urge people who decide to write on Bubblews to be aware of problems with payments. I always believed and have said on several occasions that as long as you follow the rules on Bubblews you will get paid, but from what I have experienced, that no longer seems to be the case.</span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;">Have you experienced similar problems?</span></div>
Unknownnoreply@blogger.com2London, UK51.511213899999987 -0.1198243999999704151.195100899999986 -0.7652713999999704 51.827326899999989 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-74540873199803921232013-08-14T02:00:00.002+01:002013-08-14T08:25:02.197+01:00Are Juries More Likely to Find People Guilty Just Because They Are On Trial?<div class="MsoNormal">
<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I guess I should start by explaining why at gone 1am I am wondering if juries are more likely to find people guilty just because they are on trial.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">If you follow my blog, you’ll notice that I've not been posting much for several months and that’s because I have been extremely ill.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I've been more ill than I have been in many, many years and even when I was able to write, I didn't feel up to writing about my depressing symptoms.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">So, I’m going to write about what I've been doing during that time.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I usually pick a DVD box set and watch some of my favourite TV series.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">But after a while, even that wasn't quite hitting the spot, especially as my sleeping pattern has been totally out of whack.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I've recently found a new pass time and that is watching episodes of Dateline NBC on youtube.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">For those that don’t know of it, it's an American true crime show and has the same formula; through interviews and narration we’re shown the background on a shiny happy family, one of them dies, and then the legal investigation against a suspect is carried out and finally the court case. I've watched so many episodes this past week, but I have to say, I'm seriously starting to wonder if the jury just finds every single person guilty, whether there is the evidence for it or not.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I studied Law for 3 years at college, have been a witness in a customs sting case and have sat on a jury, so the law has always interested me. In fact, I wanted to be a legal journalist once upon a time, until studying the law made me realise that the practice of law has very little to do with guilt or innocence and a lot to do with who can put on the best show in court.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">Although I'm not legally allowed to talk about the case I was asked to serve on as a juror, I will say that after that experience, I would have been more inclined to state that jurors are more likely to, initially at least, go for not guilty. I justified this by assuming that people didn't want the burden of finding someone guilty. But my case was nothing like the ones they show on NBC Dateline.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">Now I’m wondering if perhaps people think “Murder is a serious crime; they wouldn't charge someone and bring a case against them if they weren't sure.” After all, it’s always so easy on CSI and all the other shows like it. Dexter has almost been caught so many times and that’s even with him covering up from within the legal system. But I watched a couple of Dateline NBC shows today, where even the victim’s families were shocked by the guilty verdicts, and one of them even said “I didn't think they would convict on such little evidence.” Have the legal and crime drama shows that can be found airing all day every day given the average person an unreasonable level of confidence in the police and legal services? Do they think a person must be guilty of something to have come under suspicion in the first place?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">If any case shows how wrong this kind of thinking is, it's the murder case of Angie Dodge and the fact that Christopher Tapp, in 1998, was found guilty of that crime and sentenced to 25 years to life in prison. You can actually watch that episode (see the bottom of the page) and see the whole travesty yourself. But the fact is that Christopher Tapp, who was little more than a kid back then, was harassed and cajoled and fed information until he finally confessed to a crime he did not commit and even ended up implicating another man. I could write the whole sordid tale here, but I will let you watch it, all I will say is that this is such a disgusting miscarriage of justice and I wish I could do more to help get him out, as the victim's mother is currently fighting to do.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I have signed a petition and if you also feel so moved after watching the show, or doing some online investigation, please click on the link below.</span></span></div>
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span> <a href="http://www.gopetition.com/petitions/christopher-c-tapp-new-trial.html"><span style="font-family: Georgia, Times New Roman, serif;">Christopher C Tapp New Trial Petition | GoPetition</span></a><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 21px;">If you've seen this, or know of this case, let me know what you think below! Also, do you think juries are more likely to find people guilty just because they are on trial?</span>Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195100899999986 -0.7652713999999704 51.827326899999989 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-79182101946336532182013-06-03T13:06:00.000+01:002013-06-03T13:07:39.815+01:00Ill But Still Trying for ME Awareness<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgql388pIzOQq-Krw4_6n7531PkhCNKcq3yYPHiu-jF2oFZRVonaGMgNYOxfhTfJ1vrjPmtWYlC1z25f8baDj8HWEmamh6heQe4FQ1uh9hGakXW3rK5_L7cgzJAntjplzaZrib9sYgGCUPq/s1600/Karina.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgql388pIzOQq-Krw4_6n7531PkhCNKcq3yYPHiu-jF2oFZRVonaGMgNYOxfhTfJ1vrjPmtWYlC1z25f8baDj8HWEmamh6heQe4FQ1uh9hGakXW3rK5_L7cgzJAntjplzaZrib9sYgGCUPq/s320/Karina.png" width="320" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;">It has been over a month since I last posted here and that's because I have been very ill but I've still been trying to write, especially as May was ME Awareness month. I wrote a number of posts on Bubblews about ME and living with this illness, and you can find a list of these below. </span><span style="font-family: Georgia, 'Times New Roman', serif;">I'd be lying if I said it has been easy; my worsening symptoms have not helped with my mood, but we can but try. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I think the most important article I wrote was the one about Karina Hansen and I would urge you to read her story and to sign at least one of the online petitions. You could help to save her life.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjemNoSQqiL0ZLDfNmpktJzqsP0y2eXEHiAqnnIT1RVPji2nRM17d_mBYHHsRH_FXN6ejDlG2t4rRyug4xmWEJYfXFXZiKCDEaV3DlgcttbrYU-YzwgkkIO789eKcMHUyKqDKTzq-tIQITg/s1600/Kyoto+Garden+-+Holland+Park+1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="196" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjemNoSQqiL0ZLDfNmpktJzqsP0y2eXEHiAqnnIT1RVPji2nRM17d_mBYHHsRH_FXN6ejDlG2t4rRyug4xmWEJYfXFXZiKCDEaV3DlgcttbrYU-YzwgkkIO789eKcMHUyKqDKTzq-tIQITg/s320/Kyoto+Garden+-+Holland+Park+1.jpg" width="320" /></a></div>
<span style="font-family: Georgia, 'Times New Roman', serif;">When I have been able to get out, I have tried to visit places that calm and comfort like the <a href="http://www.bubblews.com/news/580632-kyoto-garden-in-holland-park" target="_blank">Kyoto Garden in Holland Park</a>, which is just so breathtakingly beautiful it even makes me forget that I am more ill now than I have been in years.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I seem to be experiencing so many situations that require time and effort to sort out, and it has been taxing. This looks to get worse in the coming months as I will be flat hunting and moving.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I had considered taking a break from writing about ME, but I know that it is too important to stop entirely, so I am going to continue as much as I can. I just hope I have the energy to visit my peaceful, calm places to recharge.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Read from me about ME:</span><br />
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<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/370963-myalgic-encephalomyelitis" target="_blank">Myalgic Encephalomyelitis</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/373132-life-as-an-me-sufferer" target="_blank">Life as an ME Sufferer</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/383288-have-you-been-cruel-to-an-ill-person" target="_blank">Have You Been Cruel to an Ill Person?</a></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.bubblews.com/news/478085-me-awareness-month" target="_blank">ME Awareness Month</a></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.bubblews.com/news/479390-the-latest-attempt-to-malign-me-sufferers" target="_blank">The Latest Attempt to Malign ME Sufferers</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/487388-me-myth-number-one-me-is-just-feeling-tired" target="_blank">ME Myth Number One: ME is Just Feeling Tired</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/492426-living-with-me-symptoms" target="_blank">Living With ME Symptoms</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/514601-are-athletes-the-best-ambassadors-for-me" target="_blank">Are Athletes the Best Ambassadors for ME</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/524269-post-exertional-malaise" target="_blank">Post Exertional Malaise</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/558115-a-pledge-i-could-not-keep" target="_blank">A Pledge I could Not Keep</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/558303-help-save-karina-hansen" target="_blank">Help Save Karina Hansen</a></span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.bubblews.com/news/570363-when-you-just-dont-have-the-luxury-of-being-ill" target="_blank">When You Don't Have the Luxury of Being Ill</a></span></li>
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Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195100899999986 -0.7652713999999704 51.827326899999989 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-18135938676815167962013-04-27T19:13:00.000+01:002013-04-27T19:33:10.080+01:00My Handsfree Samsung Tablet Lifesaver <span style="font-family: Georgia, Times New Roman, serif;">Recently my partner got a Samsung Galaxy Note 10.1 and while I was interested in his new toy, I didn't actually think I would personally get any use out of it. How wrong I was! For starters it is easier and lighter to use when I am lying down, as I found out while I was horizontal with my latest ear infection. But now he has bought an even better treat that has made things even better for me!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">What he bought is this flexible arm thing which clips onto the back of the bed (the picture below actually doesn't do it much justice) What you can do is clip this onto the back of the bed (or a bed side table) and bend the arm so the tablet hangs above your head. This means that my arms and hands do not ache after a little while, as I no longer need to use them. I can watch videos online and I even played a game like this. Also, because the arm is flexible, I can move to a comfortable position and adjust the position of the tablet to match.</span><br />
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</span> <span style="font-family: Georgia, Times New Roman, serif;">The clamp that attaches to the back of the bed is adjustable and extends up to 5cms, and the part that attaches to the tablet is also adjustable and I even used it with the Samsung Galaxy Note in it's <a href="http://www.amazon.co.uk/gp/product/B0094IDJ3Y/ref=as_li_ss_tl?ie=UTF8&camp=1634&creative=19450&creativeASIN=B0094IDJ3Y&linkCode=as2&tag=tmcg-21">tablet case</a>.<img src="http://www.assoc-amazon.co.uk/e/ir?t=tmcg-21&l=as2&o=2&a=B0094IDJ3Y" /></span><br />
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</span> <span style="font-family: Georgia, Times New Roman, serif;">I wouldn't recommend this if you intend to actually be tapping away at your tablet for an extended time, because your tablet will bob about due to the flexible arm it is attached to. Also, once it is attached to your bed, I would suggest that you leave it attached there, rather than repeated removing and reattaching. But if you're anything like me, this shouldn't be a problem. </span><br />
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</span> <span style="font-family: Georgia, Times New Roman, serif;">This is one of those things that is just so simple and inexpensive but makes a world of difference to an ME sufferer like me.</span><br />
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<a href="http://www.amazon.co.uk/gp/product/B00842O6JC/ref=as_li_ss_tl?ie=UTF8&camp=1634&creative=19450&creativeASIN=B00842O6JC&linkCode=as2&tag=tmcg-21"><br />
<img src="http://ecx.images-amazon.com/images/I/41ETZxZenRL._AA300_.jpg" style="height: 300px;" /><img src="https://images-na.ssl-images-amazon.com/images/G/02/associates/buttons/buy1._V192240163_.gif" style="margin: 5px;" /></a><img src="http://www.assoc-amazon.co.uk/e/ir?t=tmcg-21&l=as2&o=2&a=B00842O6JC" /></div>
Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-39565117343901145992013-04-23T13:43:00.000+01:002013-08-31T10:51:18.477+01:00Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9lzRuFpCm5FszoJvTzf4_UbztB8wb_eyQoSPgWxfwmwMpWSuYLS07-Ak8uZt7PofuarAchrlCgTj6_gA7qCe_ybPpzhM-9pTF0GcKGt2WOl4eq_RMqLDv91tWouW3BeQ2Q5FyO0CxWQgG/s1600/Bubblews+Screenprint+-+Second+Redemption.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9lzRuFpCm5FszoJvTzf4_UbztB8wb_eyQoSPgWxfwmwMpWSuYLS07-Ak8uZt7PofuarAchrlCgTj6_gA7qCe_ybPpzhM-9pTF0GcKGt2WOl4eq_RMqLDv91tWouW3BeQ2Q5FyO0CxWQgG/s320/Bubblews+Screenprint+-+Second+Redemption.png" width="249" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif; font-size: x-small;">EDITED 31 August 2013: Please note I have written an update to my experience with Bubblews. Please read: <a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/08/the-bubblews-warning-label-problems.html" target="_blank"><b>The Bubblews Warning Label: Problems With Payments</b></a></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I want to share here a way that I have been making extra money and that I think any ill person who is able to use their computer can also do. I haven't been posting as frequently recently as health has been on a bit of a downer and I've also been posting (or bubbling as they call it) more often on <a href="http://www.bubblews.com/?referral=516145a9bdc380.69461274" target="_blank">Bubblews</a>. I've been writing online for a few years now and my main writing has been on <a href="http://www.squidoo.com/" target="_blank">Squidoo</a> and I've made some money, but it has been tough going, especially as they made a lot of changes recently. I was not directly affected by those changes but it made me realise that if you're going to write online, you can't put all your eggs in one basket, so to speak.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Someone recommended <a href="http://www.bubblews.com/?referral=516145a9bdc380.69461274" target="_blank">Bubblews</a> and said they were making more money writing there than on any other website. So I decided to check it out. I was extremely sceptical about the site at first because it honestly sounds too good to be true. Also I read some articles about how they have not received payment for their posts.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Here are the rules and Bubblews says that they have<span style="line-height: 1.4em;"> the right to remove (and not pay out) any account that partakes in the conduct listed below:</span></span><br />
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<b style="color: blue; font-family: Georgia, 'Times New Roman', serif; line-height: 1.4em;">1. Submitting content that you did not write yourself. Copying content from other websites around the internet is stealing and Bubblews will never pay you for that.</b><br />
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>2. Abusing our likes/views/comment system by partaking in exchange groups and requesting for them through other Bubblews' members.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>3. Utilizing Traffic Exchange, Bots, Proxies, Virtual Private Network and other forms of IP manipulation is stealing from Bubblews.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>4. Submitting posts that only contain pictures and/or containing very limited text is prohibited as this is not content our advertisers like to pay for.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>5. Posting Pornographic/semi-pornographic images and/or content to Bubblews.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>6. Posting LESS THAN 400 characters per post.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>7. Posting material not written in English (Only exception is if you supplement your post with an English translation).</b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">It sounded easy enough to me, so I started posting. Straight away I realised that I got paid for everything. A visit to my article earned me $0.01, the same with a comment and the same with a 'like' (and even a 'dislike'). It doesn't sound like much, right? Well, it pretty soon adds up. You can only redeem the money that you have earned when you hit $25.00. It's slow as first and i</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 1.4em;">t took me three and a half weeks to get to make my first $25. But pretty soon, the more people you interact with on the site, the more visitors your posts get. I made it to my second $25 in just one week. </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 1.4em;">When you're able to redeem your payment, you just ask for the amount to be sent to your paypal account (I'm in the UK, so I figured this was the easiest and I didn't want to give out my bank details). You get a confirmation within a day or two and then it takes 3-4 days for the payment to clear. My first one cleared fine and the second is in the process of clearing as I type.</span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 1.4em;">I think the best part of Bubblews is that you do not have to be an experienced writer or blogger. Most people can easily write a status or have a rant in over 400 characters on Facebook and you do not get paid for that! There you do. I think it is perfect for people like us who have a chronic illness, because it allows us to write short articles and posts, be part of a community and more importantly, earn some extra money on the side. </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 1.4em;"><a href="http://www.bubblews.com/?referral=516145a9bdc380.69461274" target="_blank">Check out Bubblews today and start earning money for sharing your words!</a></span></h3>
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<span style="color: red; font-size: large;"><b><span style="font-family: Georgia, 'Times New Roman', serif;">EDITED 31 August 2013: Please note I have written an update to my experience with Bubblews. Please read: </span><a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/08/the-bubblews-warning-label-problems.html" style="font-family: Georgia, 'Times New Roman', serif;" target="_blank">The Bubblews Warning Label: Problems With Payments</a></b></span></div>
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Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-1124863971329958299.post-87461613525106126372013-04-11T15:00:00.000+01:002014-04-30T08:53:33.882+01:00An Ill Person's Reality is Seen as Negativity by the Positivity Police<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTW76SVDY3zSSOXtiwCMGYKrExMoNxwVx2pmtxJuCCLgWrWeRkdyxV3T_GUCzgwYUv-fQmgIkLC2IMLnZfIZM53eXEJy_5VnzWzO-CKkmYYdaebyKv6MpeXBT0JppwKD6nANYxp23aAGNL/s1600/Positivity+is+Not+a+Cure.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTW76SVDY3zSSOXtiwCMGYKrExMoNxwVx2pmtxJuCCLgWrWeRkdyxV3T_GUCzgwYUv-fQmgIkLC2IMLnZfIZM53eXEJy_5VnzWzO-CKkmYYdaebyKv6MpeXBT0JppwKD6nANYxp23aAGNL/s320/Positivity+is+Not+a+Cure.png" height="320" width="320" /></a></div>
<span style="font-family: Georgia, 'Times New Roman', serif;">After almost twelve years of ME/CFS I thought I could handle anything. I know my body better, I know the illness better and I am able to do so much more by managing my symptoms. I can even advise others on what I know and where I was once unable to share my experiences, I find it easier to do so these days. This blog was the first step and now I have even started to write about my experiences with ME on Bubblews <span style="color: #666666;">[</span></span><span style="font-family: Georgia, 'Times New Roman', serif;"><span style="color: #666666;">EDIT: <i>30th April 2014 I no longer write for Bubblews so all posts have no been moved to this blog</i></span></span><span style="font-family: Georgia, 'Times New Roman', serif;"><span style="color: #666666;">]</span>. I started off with an introductory piece on the illness called '</span><span style="font-family: Georgia, 'Times New Roman', serif;">Myalgic Encephalomyelitis'</span><b style="font-family: Georgia, 'Times New Roman', serif; font-style: italic;"> </b><span style="font-family: Georgia, 'Times New Roman', serif;">which was a first for me as I had never actually tried to explain it in writing before. I followed that with a post about my ME story called </span><a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/05/life-as-me-sufferer.html" style="font-family: Georgia, 'Times New Roman', serif;" target="_blank"><b><i>Life as an ME Sufferer</i></b></a><span style="font-family: Georgia, 'Times New Roman', serif;"> but I think my drive kind of fizzled out at the end there and I was forced to make a half-baked attempt at being positive.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">But yesterday I wrote <i><b><a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/10/have-you-been-cruel-to-ill-person.html" target="_blank">Have You Been Cruel to an Ill Person?</a></b></i> which was my most difficult post so far. I wrote about the cruelty we face as people who suffer from an invisible illness. I know it is important for us to write about the ugly reality of illness, but it is not easy. I would love to only write about all the wonderful things in my life, and don't get me wrong, there are plenty of parts of my life that I am so grateful for. I write about them too,<i style="font-weight: bold;"> </i>from <a href="http://www.squidoo.com/top-movies-like-paranormal-activity-found-footage-horror-films" target="_blank">the horror movies that I like to watch</a>, to <a href="http://www.squidoo.com/earls-court-london-walk" target="_blank">local places and attractions</a> that I love to visit when I am able to get out. But the truth is that people who suffer from invisible illnesses, who are afflicted with these awful chronic illnesses are so misunderstood and I can't help but feel that the more we get our stories out there, the more we can lift the veil and show our side of things.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">Today my sister contacted me to tell me about a book she was reading that had a chapter on Pain, Chronic Fatigue and ME in it. I know my sister loves me and she genuinely believes that what she is suggesting is helpful to me and that it will help me to get better. However, from previous experience, I know that my sister is very much into mind over matter and we choose illness and pain etc. I used to be exactly the same as her, if not worse, so I can't blame her. But when I read through the chapter she suggested, I felt slap after slap. There were stories and testimonies from people who managed to cure or even alleviate their suffering from ME/CFS by visualisation and positive thinking. The implied message here is that people with ME or any other illness are ill because we are just not positive enough.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Then this morning I saw Liz Crow and <b style="font-style: italic;"><a href="http://www.roaring-girl.co.uk/" target="_blank">Bedding Out</a> </b>and it made me feel so much better. It reminded me of my initial belief; the importance of getting our story out there. The Positivity Police no doubt see any kind of spotlight on illness as negativity and the reason for our continued illness. In a world where you are being advised to visualise beauty and light instead of saying "Hey, I'm in pain" or "This is how I spend time in bed, recovering" that which is our reality is seen as nothing but negativity.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Right now I may be feeling like I have taken a kick in the stomach, but I won't stop. I will keep writing and our stories will be heard.</span></div>
Unknownnoreply@blogger.com4London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-45786749393504630642013-04-08T08:00:00.000+01:002014-04-30T08:38:48.537+01:00Life As An ME Sufferer<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY1QZYDabUeh4iHvqqbWeUqQsEFv4t72s7tNROf5AOg3jEtF3MJ6QyJGBa4QjT_22Kyp_xzRT53stkfG49vYRw1lZnAodbNkB7HtzdyYszr_GLAgUb4Hdrjd3cwul6Xzn07FpUfV9BtClT/s1600/Life+as+an+ME-CFS+Sufferer.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY1QZYDabUeh4iHvqqbWeUqQsEFv4t72s7tNROf5AOg3jEtF3MJ6QyJGBa4QjT_22Kyp_xzRT53stkfG49vYRw1lZnAodbNkB7HtzdyYszr_GLAgUb4Hdrjd3cwul6Xzn07FpUfV9BtClT/s1600/Life+as+an+ME-CFS+Sufferer.jpg" /></a></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">Yesterday* I wrote about an illness called Myalgic Encephalomyelitis (ME) which is an
organic neurological illness. The reason I know so much about ME and try to
raise awareness of it is because I have been a sufferer since 2001.</span></span></div>
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">
<br />
Imagine waking up one day, excited and happy; you're going away for the August
bank holiday weekend with friends. You sit down to a meal one evening, and over
a glass of wine, have a lovely chat with friends. That, right there, is the
last time you will ever feel healthy again. Can you imagine that? </span></span><br />
<a name='more'></a><br />
<span style="font-family: Georgia, 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">On 26th
August 2001 my life changed forever. The next few days I was ill with what I
assumed was food poisoning, even though I was the only one that was effected
out of all the diners. The next few months I did not seem able to shake the
extreme fatigue and pain. It felt like I had really bad flu all the time and my
muscles ached and my joints were swollen and inflamed. I had never been ill and
I did not believe in slowing down for illness. I had always believed in
soldiering on; mind over matter and all that. It was six months before I saw a
doctor and by then I could barely grasp anything, my arms were so weak. </span><br />
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">
<br />
I still continued to work until I was physically unable to and in 2003 I left
my job. I planned to take a few months out to rest; little did I realise that
it would be 7 years before I would be well enough to even consider working
again. In 2005, after 3 years of tests, I was finally diagnosed with ME. It was
good to finally have a name for the illness, but once I learned more about the
illness, it was quite disheartening. Still, I tried any alternative treatment
that I could, unable to accept that I was ill and I became more and more ill.<br />
<br />
I spent 7 years housebound and even bedbound at times. I lost all my friends,
my life, and even myself. But slowly, I found a way. I found a new me and I met
some great new friends. I got better and I met someone and I got a job again.
Of course, then I went and made the mistake of thinking I had ME, rather than
remembering that I still have ME and I pushed my health too far and became ill
again, but it is OK. I am working on my health and I am still working with
others to raise awareness of it. ME is ME but it is not me.</span></span><br />
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: small;">*: This post was originally published on Bubblews in April 2013.</span><br />
</span></span><br />
<div style="text-align: right;">
<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.flickr.com/photos/emigh/57913727/" style="line-height: 115%;" target="_blank"><span style="font-size: x-small;"><i>Image Credit</i></span></a></span></div>
Unknownnoreply@blogger.com0London, UK51.508515 -0.1254871999999522851.192402 -0.77093419999995227 51.824628000000004 0.51995980000004771tag:blogger.com,1999:blog-1124863971329958299.post-44261341623670388462013-04-06T19:38:00.000+01:002013-04-06T19:43:09.699+01:00Football Match and a BPD Emotional Drive-By: Just Another Week For This ME Sufferer<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJv8pUemTJZ6HeiclJ4Z2CPEVynHIN-VGRHUpDBsnZ1UY9mOUIx4k8hlNrPIa4RnhsLM5XG3_wXLbe1mLfN_Qzq_cE2knLml8-PZv22Plgbtr4DNb7N56VqCyTBgAb3KRAU_SKYsfPfOFM/s1600/Chelsea+v+Man+Utd.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="191" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJv8pUemTJZ6HeiclJ4Z2CPEVynHIN-VGRHUpDBsnZ1UY9mOUIx4k8hlNrPIa4RnhsLM5XG3_wXLbe1mLfN_Qzq_cE2knLml8-PZv22Plgbtr4DNb7N56VqCyTBgAb3KRAU_SKYsfPfOFM/s400/Chelsea+v+Man+Utd.jpg" width="400" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 115%;"><br /></span></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I've had a
zombified, slow-mo week but I didn't really mind as it was payment for a great
day out with my partner.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">On Bank Holiday
Monday my partner and I went to see Chelsea v Manchester United.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">He had managed to get the tickets from some
guy at work that was unable to make it and the stadium is close to where we
live.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">My partner is Italian, so he does
not support either team (he’s an Inter Milan fan) but he enjoys going to see
live matches.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">I wasn't really looking
forward to going as I’m not really a football fan but I was adamant that I
would go.</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">We hardly ever do anything as
a couple anymore, what with me always being ill and he really wanted us to go.</span></div>
<a name='more'></a><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 115%;">Well, I had
a surprisingly good day; and best of all, I got to do something normal with my
other half! It was just as well the day
got me on such a high because by that night, I was already crippled with pain
and walking has been a problem for me all week.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I've had
this numb sensation all week, because I've been so ill and fatigued, I've sort
of been in my own little bubble and I haven’t been stressed about
anything. I have to say that is one of
the only good things about feeling so ill; the numbness.<o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">Then today
the proverbial hit the fan! I was
feeling so crappy all morning that I was barely conscious until early
afternoon. It seemed silly to get so
happy about going to the match when I couldn't even stay awake or upright for a
conversation or lunch with my partner.
Still, we spent some time together in the afternoon and I was just
coming out of the slump when I received a text from my sister who suffers from
BPD (Borderline Personality Disorder). I
won’t go into the illness too much here, but suffice to say that she has some
extremely bad episodes where she can lash out at people or feel hurt and upset
because of some slight she feels you have inflicted. Things had been going really well between us
recently and I was feeling happier about our relationship. But today she messaged me because she feels I
am trying to cut her out of my life, that I back off from her and that I've
been making passive aggressive comments.
It was shocking and upsetting.
The things is, I know it is not her fault and that it is her illness,
but she is unable to see that it is my illness that makes me the way I am
too. I have been so ill the last few
months that I am very detached and I don’t even get stressed out over anything
anymore because I just can’t do it. But
this comes across as me being fake or insincere. I know there’s nothing that can be done and I’m
not angry, but unknowingly, she picked the worst day for her emotional drive
by. <o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I can feel
the stress of the day clawing at me from the inside. My stomach feels tight and my body feels
tense. I tried some breathing exercises
to release it and that helped a little.
My partner keeps asking me what is wrong as he has sensed the shift in
my mood, but I don’t really want to spend our whole evening discussing my
sister. I feel better after just writing
it out here and perhaps now I can relax a little get into bed and maybe even
concentrate enough to watch a movie.<o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;">I hope so
anyway.</span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; line-height: 115%;">At least I don't regret the football match now.</span></div>
Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-31467556294733393472013-03-25T12:32:00.001+00:002013-03-25T12:33:37.101+00:00That Awful Sunday Feeling<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhafnY33eflKcOPh1__ZMb1W6Szacr-Lx27jtNHeT-hSKkJcsItoRVBQ4EG4hxEYA8U-IBKZrkiuVe5KmidJjBIBk_AaOayAd28Gq2We1X9j7Cf-GQWAHnMQ7WC_1BLSOn8biW7h-9KDJBZ/s1600/sunday+selfp+(i+hate+sunday+as+usual).jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhafnY33eflKcOPh1__ZMb1W6Szacr-Lx27jtNHeT-hSKkJcsItoRVBQ4EG4hxEYA8U-IBKZrkiuVe5KmidJjBIBk_AaOayAd28Gq2We1X9j7Cf-GQWAHnMQ7WC_1BLSOn8biW7h-9KDJBZ/s320/sunday+selfp+(i+hate+sunday+as+usual).jpg" width="226" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhafnY33eflKcOPh1__ZMb1W6Szacr-Lx27jtNHeT-hSKkJcsItoRVBQ4EG4hxEYA8U-IBKZrkiuVe5KmidJjBIBk_AaOayAd28Gq2We1X9j7Cf-GQWAHnMQ7WC_1BLSOn8biW7h-9KDJBZ/s1600/sunday+selfp+(i+hate+sunday+as+usual).jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a><span style="font-family: Georgia, 'Times New Roman', serif;"></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">Ever since I was
old enough to form an opinion I've hated Sundays. I guess that is normal when
Sundays signify the end of the weekend and the start of the school/work week
the next day, but not so normal when you don't work and everyday involves around
the same routine. What are even worse
are bank holiday weekends - as I get that awful Sunday feeling twice.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">Right up until I
became ill with ME I think I just had that normal sense of "Oh, the
weekend's over - bloody school/work again tomorrow." Now, there is nothing
normal about the depth of sadness I feel every Sunday. It was less so during the autumn and winter months
but as we creep towards longer days, it is definitely getting worse. <o:p></o:p></span></div>
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<a name='more'></a><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Today is Monday
and the week has started. Even though I
do not have a job I need to go to, I do have my work to do and my routine to
keep to. I woke up feeling fine and have
been getting on with what needs to be done and as the week progresses towards the
weekend, I’ll feel more and more hopeful and happy, until I crash again on
Sunday. I never get the Monday blues,
but Sunday, that is a different story.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">Why are Sundays so
awful? What is it that makes them so
devastating? I’m not just talking about
feeling glum or sad, but I feel such devastating disappointment and misery; the
week before seems like a waste of time and energy and I wonder why I even
bothered, and the week ahead seems devoid of any hope or promise. Is it normal to have a depression that lasts
just one day a week? The worst part is
that I didn’t even see the pattern until my partner commented on it. Poor guy, he must dread Sundays too now all
because of me. Since he mentioned it to
me a few weeks ago I have been trying to understand what happens with me on
Sundays. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">I think that for
most of the time I can just keep trying and pushing forward with this illness,
but for whatever reason, on Sundays I let all the misery in before starting up
the fight again on Monday. I can’t
decide if I am insane or a genius.
Anyway, what I’m going to plan to do every Sunday from now on is
something to distract myself; plan something pleasant for each Sunday to try
and make myself like Sundays. I don’t
know if it will work, but I sure as heck am going to try!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Georgia, Times New Roman, serif;">I’m almost
scared to ask, but does anyone have any ideas on this awful Sunday feeling or
by any chance, does anyone else feel the same?</span><o:p></o:p></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: x-small;"><i><a href="http://www.flickr.com/photos/tommy_pariah/2664672951/" target="_blank">Image Credit and Terms of Use</a></i></span></div>
Unknownnoreply@blogger.com2London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-42492602161832663472013-03-23T13:33:00.002+00:002013-03-23T13:33:26.145+00:00National Puppy Day 2013<span style="font-family: Georgia, Times New Roman, serif;">This is just a very quick post about a day that is very close to my heart - National Puppy Day! On 23rd March 2013, it will be the 8th anniversary of this day which not only encourages us to appreciate puppies and the joy and magic they bring to our lives, but also tries to educate and raise awareness about adopting puppies and stopping the evil and horrific practices of Puppy Farming.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I found out about National Puppy Day last year and try to do what I can to educate others as my dogs have meant the world to me and were the only things that kept me going through this illness. No animal deserves to be used and abused by humans just for profit. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Please, please, please can you read the posts I have written about National Puppy Day and Puppy Mills and forward them to as many people as possible.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Thank you so much!</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<br />
<div style="text-align: center;">
<span style="font-family: Georgia, 'Times New Roman', serif; font-size: x-large;">Read <i><a href="http://www.bubblews.com/news/339234-national-puppy-day-to-stop-puppy-farms" target="_blank">National Puppy Day to Stop Puppy Farms</a></i> and </span></div>
<span style="font-family: Georgia, Times New Roman, serif; font-size: x-large;"><div style="text-align: center;">
<i><a href="http://www.squidoo.com/national-puppy-day-23rd-march" target="_blank">National Puppy Day Against Puppy Mills</a></i></div>
</span><br />
<div style="text-align: center;">
<br /></div>
Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-52634536788538133292013-03-21T11:04:00.000+00:002013-04-06T19:53:11.817+01:00Being Positive Can Be Dangerous For Your Health<span style="font-family: Georgia, Times New Roman, serif;">Yesterday I posted an article on Bubblews called <a href="http://www.bubblews.com/news/331645-5-reasons-being-positive-is-wrong" target="_blank">5 Reasons Being Positive Is Wrong</a><span style="font-size: small;">, but it got so long that I had to leave so much out especially the part about how being positive can be dangerous for your health.</span> For anyone that has read my previous posts, you’ll know that in August 2001 I became extremely ill after what I thought was just a case of food poisoning; constant flu symptoms, aching muscles, cognitive problems, joint pain and so much more. You know how it goes. I had been trained to consider giving into illness as a weakness, as something that is negative. As I explain in <a href="http://www.bubblews.com/news/331645-5-reasons-being-positive-is-wrong" target="_blank">5 Reasons Being Positive Is Wrong</a>, trying to be positive just made me more and more ill, but it was only when I was real and honest that I not only felt emotionally better, but my physical symptoms also improved.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Why is it that as a society we are hell bent on forcing ill people to endure with a smile? I won’t repeat the reasons I give in my Bubblews article, but I just want to say that this ‘being positive’ malarkey is totally ridiculous and puts more stress on an ill person rather than helping. If you’re ill and you’re honestly happy and positive about it, then more power to you! Embrace your truth and live like that. But for the rest of us, it may take tears, chocolate or duvet diving to help us to get through the worst of our symptoms. </span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><br />
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<a href="http://www.amazon.com/gp/product/145166561X/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=145166561X&linkCode=as2&tag=aqinsquid-20"><img src="http://ecx.images-amazon.com/images/I/51kdu6fCVTL.jpg" style="height: 300px;" /><img src="https://images-na.ssl-images-amazon.com/images/G/01/associates/remote-buy-box/buy1._V192207739_.gif" style="margin: 5px;" /></a><img src="http://www.assoc-amazon.com/e/ir?t=aqinsquid-20&l=as2&o=1&a=145166561X" /></div>
<div style="float: left; margin-bottom: 10px; margin-right: 20px; width: 200px;">
<a href="http://www.amazon.co.uk/gp/product/0007456077/ref=as_li_ss_tl?ie=UTF8&camp=1634&creative=19450&creativeASIN=0007456077&linkCode=as2&tag=aqinsquid-21"><img src="http://ecx.images-amazon.com/images/I/51%2BdPSLJyML.jpg" style="height: 300px;" /><img src="https://images-na.ssl-images-amazon.com/images/G/02/associates/buttons/buy1._V192240163_.gif" style="margin: 5px;" /></a><img src="http://www.assoc-amazon.co.uk/e/ir?t=aqinsquid-21&l=as2&o=2&a=0007456077" /></div>
<span style="font-family: Georgia, 'Times New Roman', serif;">I remember when I read <i>The Journey</i> by Brandon Bays and she talks about a week when everything went wrong for her, and she just allowed the emotions to sweep over her. She cried and she was depressed; she didn't try to block them, she just allowed them to flow. She felt awful for a few days, but then it was gone. She had gone through whatever she needed to. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
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<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">In fact, the whole book is about how suppressing emotions can affect us at a cellular level. There are instances of people going within themselves to look at a tumour or illness and realisations of how negative emotions and experiences from years ago were being held within at a cellular level. Brandon Bays </span><span style="font-family: Georgia, 'Times New Roman', serif;">has helped many ill people with her work and I am one of these people. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Even if we look at it from a totally logical point of view, when we feel one thing, say a negative emotion like fear or doubt or anger, but pretend that we are positive, hopeful and happy, a disturbance occurs in our body as these two opposing notions go up against each other. That can't be good for us, can it? Isn't it much better to admit how we feel, look at why we feel that way and try to see what we can do about that?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Yes we must try to maintain hope and work towards getting better, but pretending to feel something we don't is not the way forward and will just make us more ill in the long run. Acknowledging how bad our health is the best way to device a treatment plan. Doctors do not focus on healthy bodies, they focus on the disease, the tumour, the illness and that is how they treat and beat them so you can be the healthier.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">There is another book that really looks at how we deal with illness and it is called <i>The Human Side of Cancer: Living with Hope, Coping with Uncertainty </i>and is by Jimmie C. Holland, M.D. and Sheldon Lewis. There is a Chapter in this book called <i>The Tyranny of Positive Thinking</i> which looks at the negative affect the pressure of thinking positively can have on patients. You can read that chapter for free online by following the link below.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">It is perfectly normal to experience a whole range of emotions when we deal with illness. No-one can dictate how we should be reacting to a situation and even worse, as the examples show in </span><i style="font-family: Georgia, 'Times New Roman', serif;">The Human Side of Cancer</i><span style="font-family: Georgia, 'Times New Roman', serif;"> patients were making themselves more stressed out and worried by obsessing over whether they were being positive enough. Who needs that extra worry on top of cancer?</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><a href="http://www.humansideofcancer.com/chapter.2.pdf" target="_blank">Read <i><b>Chapter 2: The Tyranny of Positive Thinking</b></i> from <i><b>The Human Side of Cancer</b> </i>online now for free!</a></span>Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-57462986248587293262013-03-18T17:05:00.000+00:002013-03-18T17:06:33.764+00:00Fevre Dream and Sleepless Nights with a Touch of Reverse SAD<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">It's been a couple of weeks since I last posted and what a couple of weeks it has been! I wish that was because the fortnight had been so wonderfully busy, but actually the opposite is true. My recent exertions really took their toll on me; since I posted <a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/02/my-german-shepherd-carer.html" target="_blank">My German Shepherd Carer</a> the day before I went to visit my family, I had to make another trip because one of my sisters had an announcement to make to the whole family (I'm going to be an aunt!). Both trips were great, but the effects have been too much to bear. I've been so exhausted and in pain; the slightest activity is having a profound affect on my health and taking a ridiculous amount of time to recover from. More than anything, this has left me feeling so down; can't I do anything fun without having to pay for it and when the hell did my health get so bad again?</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">As if all that wasn't enough, I've barely been sleeping. I think that is to do with the fact that the days are getting longer and spring is almost here. It may sound strange, but I have reverse SAD (you can read more about in </span><span style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.squidoo.com/melting-to-death-in-the-sun" target="_blank">Melting to Death in the Sun: Life as a Reverse SAD Sufferer</a></span><span style="font-family: Georgia, 'Times New Roman', serif;">) so my favourite half of the year has just ended. In an attempt to stop myself from totally sinking into depression, I decided to try and lose myself in fiction. I don't get the chance to read for fun these days; </span><span style="font-family: Georgia, 'Times New Roman', serif;">when I do have some free time and energy to read, </span><span style="font-family: Georgia, 'Times New Roman', serif;">I tend to read mostly non-fiction books that are guides or manuals.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">So far I've managed to complete one book <a href="http://www.squidoo.com/fevre-dream-george-r-r-martin" target="_blank"><i>Fevre Dream</i> by George R. R. Martin</a>. I love vampire stories, but do not like historical fiction, however I enjoyed this book so much that it inspired me to write a book review, and that helped me to get back into writing again. You can read the <a href="http://www.squidoo.com/fevre-dream-george-r-r-martin" target="_blank">full book review on Squidoo</a> but after I had written it, it got me wondering, what do other ME sufferers do to prevent spiraling into the ever threatening darkness that accompanies this illness? I was lucky this time, I was able to read, but there were periods in my past where I couldn't read because the resulting headaches and eye pain was too much even for an avid reader like me. Then I would listen to audio books or watch DVDs of my most beloved shows or movies. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">If you're an ME/CFS sufferer, is there something that you do to keep the worst of your illness pulling you down? Are there people that help you? Are there books and movies that bring comfort and distraction or is there something else that you do? I'd really appreciate the extra ideas as I have a feeling I may need to branch out into a few other areas if my health continues the way it is.</span>Unknownnoreply@blogger.com0London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-65307079890355658772013-03-04T12:00:00.001+00:002013-03-07T19:22:29.062+00:00ME/CFS is NOT Demonic Possession<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, serif; font-size: 12pt; line-height: 115%;">It seems completely unnecessary to have to say "ME/CFS is NOT Demonic Possession" but apparently it still needs to be said regularly. I haven't posted for over a week because as much as I loved visiting my family last week, it really took it out of me. I managed to get some basic work done this week, but I've been barely functioning and then along came the monthly monster and that did not help at all. But what has spurred me to write today is an e-mail I received from someone. The message is extremely ignorant, bigoted and the sheer arrogance of the man to actually send it to me is astounding, but still I am thankful as it has fired me up, after being a numb blob for most of the week.</span><br />
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I regularly <a href="http://www.squidoo.com/lensmasters/aquarian_insight">write articles</a> (or lenses as they are called) on Squidoo and I write about a variety of topics including recipes, horror movies, book reviews, product reviews, tarot and divination and of course living with a chronic illness. Every now and then I get someone sending me a message telling me why I have ME/CFS or a chronic illness. These are not from people who are doctors, fellow sufferers or even any kind of therapists. These are people that have seen I have a chronic illness and then they proceed to tell me how one of the other interests I have is causing my illness.</span><br />
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Here are some examples. I wrote an article for Halloween called <b><a href="http://www.squidoo.com/ghost-movies-based-on-true-events">Ghostly Horror Movies Based On True Events</a></b> which was just a collection of horror movies where the makers have based their movies on actual events. It does not claim that the movies are real or even says that the ‘true events’ have any real validity. Yet, somehow this article has lead people to send me messages telling me about how my illness is caused by evil spirits that I have attracted by watching and writing about horror movies. I really wouldn’t care if these people just left comments on my articles, as controversy is actually good for discussion and I encourage people to tell me what they think. These people though, seek out a way to contact me privately and send me e-mails telling me their wacko theories.<o:p></o:p></span></div>
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<span style="font-family: "Georgia","serif"; font-size: 12.0pt; line-height: 115%;">Another example is the message I was sent today, which unfortunately is not the only message of its kind that I have received. It stated that CFS is “correlated with demonic activity” and this person then sent me links to an article about how reading tarot cards leaves you open to demonic possession and some youtube videos. I have to say that the guy that e-mailed me today was very sincere in his e-mail and even said it was sent with the best of intention.<o:p></o:p></span></div>
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<span style="font-family: "Georgia","serif"; font-size: 12.0pt; line-height: 115%;">Often, these people have not read or looked at my articles, but have just seen the titles and assume things about me. Just because I write about a topic, it does not mean that I advocate or believe in the subject. Even if I totally ignore the validity of what they believe, why do they feel the need to warn me? <o:p></o:p></span></div>
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<span style="font-family: "Georgia","serif"; font-size: 12.0pt; line-height: 115%;">I find it extremely insulting that anyone would contact someone and state that their illness is the result of some superstitious and unfounded idea. I also find that people do it to me more because I have ME/CFS; I’m sure if I had any other ‘real’ (for them) illness, they’d be less likely to do it. <o:p></o:p></span></div>
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<span style="font-family: "Georgia","serif"; font-size: 12.0pt; line-height: 115%;">Unbelievably, as I have been typing this post, I received another message from someone on an article titled <b><a href="http://www.squidoo.com/how-to-explain-your-chronic-illness-to-friends-and-family" target="_blank">How to Explain Your Chronic Illness to Friends and Family</a> </b>which states that there is no such thing as chronic illness and the person who wrote it claims to have had a “close call” with the symptoms and issues I write about. Not surprisingly this person is the owner of an empath website, so I’m sure he or she believes I am just an empath that is not controlling it properly.<o:p></o:p></span></div>
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<span style="font-family: "Georgia","serif"; font-size: 12.0pt; line-height: 115%;">This second kind of comment is actually more worrying than the first because its author does not believe there is any kind of illness at all, and to write about it or acknowledge it is seen as negative, and to give in to illness. I don’t agree with that at all and it is very similar to the awful ‘ill-thinking’ rubbish people who believe ME/CFS is psychosomatic come out with. </span><span style="font-family: Georgia, serif; font-size: 12pt; line-height: 115%;">The former types of comments remind me of those times when people suffering from schizophrenia would be accused of demonic possession. People stopped believing that, but it seems ME/CFS sufferers are still fair game when it comes to these types of ideas. The fact is that ME/CFS sufferers come from all walks of life and are of all ages. We have different beliefs, different lifestyles and some of us only have this awful illness in common. So even if tarot has opened me up to demonic possession, how do they explain the ME/CFS sufferer who has been ill since childhood and has never had the chance to do anything to allow demons in?</span></div>
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<span style="font-family: "Georgia","serif"; font-size: 12.0pt; line-height: 115%;">It is ridiculous and their reasoning falls apart with very little probing, but the arrogance of these people to contact ill people with their drivel is shocking. It is insulting and an awful thing to say to someone, no matter how good people believe their intentions to be. Do you think I'm over-reacting or do these people have a point?</span><br />
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<span style="font-family: "Georgia","serif"; font-size: x-small; line-height: 115%;"><a href="http://www.squidoo.com/how-to-date-when-you-have-a-chronic-illness" target="_blank">Image Credit</a></span></div>
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Unknownnoreply@blogger.com10London, UK51.511213899999987 -0.1198243999999704151.195106399999986 -0.7652713999999704 51.827321399999988 0.52562260000002958tag:blogger.com,1999:blog-1124863971329958299.post-44183961682294623272013-02-21T13:56:00.000+00:002013-03-04T13:23:32.311+00:00My German Shepherd Carer<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">When I moved out of my parents house in 2010, it was a time to celebrate, because I was finally well enough to move on and live in my own place with my boyfriend, but it was also an extremely sad day because I had to leave behind my companion, my carer and often my reason for getting out of bed for the past 5 years, the family German Shepherd dog called Masti.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I would go and visit him (and the rest of the family) quite often as they only live a few towns west from where I am in London. But as I became more and more ill, travelling on trains became more difficult. As I write this, it has been almost 3 months since I visited and I miss my family and especially Masti so much.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Masti at a few months old when his ears had straightened out</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Jack was so gentle and always ready to join in</td></tr>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Before Masti, we had a German Shepherd called Jack. My sisters and I grew up with him, and he was the best companion four little girls could ever want. When he died in 1999, it was the single most painful thing I had ever experienced in my life. We talked about getting another dog several times, after that, but we were all grown up, not all living at home and with me becoming ill and everyone busy with work, we always decided it was not a good idea. Still, we missed Jack; even now, when he has been gone longer than he was in my life, I think of him every single day. Once you have known the love and companionship of a dog, especially a German Shepherd, it is awful to live without one in your life.</span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">In 2005, I was away for 4 months getting treatment. While I was away, my family bought a little German Shepherd puppy that another family no longer wanted. When I heard this I was not happy as I could not imagine the added stress of a dog in the house when I got back and also, I still missed Jack too much and I did feel the way my family was raving about the new dog was a betrayal of our beloved Jack.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Masti just before his 2nd birthday</td></tr>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Things only got worse when I met Masti. He was so naughty! In fact my sister had named him Masti which means</span><b style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 14px; line-height: 19.59375px;"> </b><span style="background-color: white; line-height: 19.59375px;"><span style="font-family: Georgia, Times New Roman, serif;">'fun' or 'mischief' in Hindi to suit his personality. The fact that the whole family had spoiled him rotten did not help either. Jack had been an obedient and well-trained dog - Masti was anything but. Those first few weeks with Masti made me miss Jack so much more.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 19.59375px;">Of course my family did not help - they would all head to work and leave me alone at home with an untrained, unruly puppy and with the puppy messes. I wasn't always well enough to get up and get myself to the bathroom, let alone to train the dog or to clean up his messes. One of my sisters stated quite clearly that whoever was at home was responsible for clearing up his bathroom mishaps. That was her passive aggressive way of telling me how lazy I was and that I should be doing more for the dog, and of totally ignoring my illness. </span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3j_y3mLltibHyP7UajPi5dNMr4y-Tl4kFHwljH8u_Bd7w_ae70a_CVnfNvg1QukE5SbUDjiEZ4mpuXEojDzdFweVeXmjech9C3VCYNlcQllbL7ezaxEjTshISQH70Sr7NebwiQt35kuw/s1600/German+Shepherd+Dog+-+First+Snowfall+2007.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3j_y3mLltibHyP7UajPi5dNMr4y-Tl4kFHwljH8u_Bd7w_ae70a_CVnfNvg1QukE5SbUDjiEZ4mpuXEojDzdFweVeXmjech9C3VCYNlcQllbL7ezaxEjTshISQH70Sr7NebwiQt35kuw/s1600/German+Shepherd+Dog+-+First+Snowfall+2007.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Masti's first snow fall!</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif;">This was the end of 2005 and the beginning of 2006 and if you've read </span><a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/02/interview-with-maria-mann-me-hero-who.html" style="font-family: Georgia, 'Times New Roman', serif;" target="_blank">Interview with Maria Mann - An ME Hero Who Saved My Life</a> <span style="font-family: Georgia, Times New Roman, serif;">you'll know that was not the best time for me. But slowly things begin to change and Masti actually helped. Teaching Masti to find a routine, also helped me to find one. I may have been ill, but I was a strong pack leader and thanks to Masti's natural intelligence and obedience and with lots of tips from the show <i>The Dog Whisperer</i>, very soon he followed all my commands and my lonely days were gone.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I had a funny, furry, gorgeous friend who listened when I talked, was happy to do all the work and activity when we played (all I had to do was either throw or hide his toys and he's go get them and give them to me), he learned better than any human when I was too ill and needed snuggles and quiet and also when I was down and needed to laugh. On those rare occasions I was feeling better, he always knew and would stand before me wagging his tail, inviting me out to sit with him in the garden.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVBldxFZy_fNAsyrhmnDcnmVQqRQ16hIliCUxNHWiFGvYyOgxEo5TrZ6jHmeLOgeXbzVApBtEJ9IEvlYZYfAPDa31Cs-bDoLGwGaqvCucrAr7phlPRq9hVsgFRlp2cYJzi9Qzcycw0rvSj/s1600/Masti+in+his+Tent+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVBldxFZy_fNAsyrhmnDcnmVQqRQ16hIliCUxNHWiFGvYyOgxEo5TrZ6jHmeLOgeXbzVApBtEJ9IEvlYZYfAPDa31Cs-bDoLGwGaqvCucrAr7phlPRq9hVsgFRlp2cYJzi9Qzcycw0rvSj/s320/Masti+in+his+Tent+2.jpg" width="320" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;">He helped me pace myself and to find a routine, and so he helped me manage my health and my symptoms. I love him and miss him loads. I would love to get my very own German Shepherd, but even if my tenancy agreement allowed it, the fact is that German Shepherds require a lot of exercise. At my parents house, there were other able-bodied people to take care of his physical needs, but here there would not be. It would be selfish and wrong of me to own a German Shepherd now. Still I dream of the day I can have my own dog. I have had many people suggest that I do not need to get a big dog like a GSD, but can get a more low-maintenance dog. But this heart belongs to German Shepherds and that is what I really want.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1csKGmwsR6Usi9K-dhQ_PNENS-z6v_l2eZ0txxq7G2gpMDSYc1xecyW2tDqcZRA12qyvDCRKs4Xdajb33OfeFrwnv3Y7u-wxRmRneP357tP5Eo7dtDxHqspVbx1XrvUuVLHC4PsS-XjSR/s1600/Puggle+Monty+10+large.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1csKGmwsR6Usi9K-dhQ_PNENS-z6v_l2eZ0txxq7G2gpMDSYc1xecyW2tDqcZRA12qyvDCRKs4Xdajb33OfeFrwnv3Y7u-wxRmRneP357tP5Eo7dtDxHqspVbx1XrvUuVLHC4PsS-XjSR/s1600/Puggle+Monty+10+large.jpg" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">My sister has a Puggle which she got as a puppy over a year ago. His name is Monty and his parents are a Pug and a Beagle. I looked after him a couple of times for a few hours or so, but as cute as he is and I loved having him, he reminded me how much energy a puppy requires.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The good news is that I will be visiting my Masti tomorrow. So even if I can't have my very own furry friend right now, I still have access to furry pawed cuddles.</span><br />
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<span style="font-size: large;"><b><span style="font-family: Georgia, Times New Roman, serif;">You can read more about Jack and Masti and </span></b></span><br />
<span style="font-size: large;"><b><span style="font-family: Georgia, Times New Roman, serif;">see lots more pics on my Squidoo lens</span></b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><b> <a href="http://www.squidoo.com/german-shepherd-puppies-and-dogs" target="_blank">German Shepherd Puppies and Dogs</a></b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><b>There are lots more pics of Monty, not to mention a whole load of information about National Puppy Day on my Squidoo lens </b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><b><a href="http://www.squidoo.com/national-puppy-day-23rd-march" target="_blank">National Puppy Day Against Puppy Mills</a></b></span></div>
Unknownnoreply@blogger.com0London, UK51.5170986 -0.1460838000000421751.200991099999996 -0.79153080000004217 51.8332061 0.49936319999995782tag:blogger.com,1999:blog-1124863971329958299.post-19786729084063681232013-02-20T15:10:00.000+00:002013-03-04T13:23:53.457+00:00The Issue of Weight and ME/CFS<span style="font-family: Georgia, Times New Roman, serif;">I'm having an awful day after sleeping very little. I woke up several times because I developed a headache during the night. (How the hell does one do that while asleep?!!!) I woke up with such a painful thigh and hip that it took me a while to get up and moving this morning. So I'm feeling down and not really able to think much and get any writing done. But it seems my mental paralysis does not cover obsessing about my weight today.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I've never been a skinny girl and before I became ill, I didn't even know how much I weighed. I was very comfortable in my body; </span><span style="font-family: Georgia, 'Times New Roman', serif;">I used to workout when I wanted to and eat what I wanted to. I was healthy and happy and I had never been on a diet in my life.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> Then I became ill and I piled on the pounds and that was when my weight became an issue. If I loved to eat and put on weight because of that I wouldn't have cared; if my weight had changed because of any single thing that I had done, I wouldn't have cared. But if anything I was eating less and in the first six months of being ill I had stomach bugs and flu symptoms almost continuously. My ballooning body was just another example of how my body was becoming alien to me.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">As I didn't know my weight before I became ill, I'm guessing I put on five or six stones, most of that in the first few years. It was actually more insulting to be so fat because ill people are usually frail and lose weight, so it seemed like just another reason for people to not believe I was ill. It seemed so unfair; if I was going to be ill, I could have at least had the added perk of losing weight!</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">But I didn't constantly worry about my weight; when you have ME/CFS there are plenty of things to think and feel. It's just on days like to day, the weight seems like an added insult.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">When I began to feel better four years ago, the weight dropped off just as quickly. I lost 50lbs without exercising or dieting, or even increasing my activity. When I started being able to leave the house and did increase my activity levels, I lost weight even faster. I lost six and a half stones in one year. Of course much of that has been creeping back now that I'm ill again.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">It is horrible and most of the time I try not to think of it as there's not much I can do. But it does hurt. It seems and shallow and stupid, but my weight bothers me. My body feels alien, like it's not my own. Plus I met my partner when I was going through a healthy phase; now he's stuck with an ill fat woman. He never says anything and is so sweet, and normally I am grateful for that, but on days like today I wonder how much more he will take. It doesn't help when my own father stated clearly that I was ill because I was fat, not fat because I was ill.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">As with most ME/CFS worries, I can only hope that tomorrow is a better day.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Unknownnoreply@blogger.com0London, UK51.5170986 -0.1460838000000421751.200991099999996 -0.79153080000004217 51.8332061 0.49936319999995782tag:blogger.com,1999:blog-1124863971329958299.post-64782403457152376172013-02-19T19:00:00.000+00:002013-03-04T13:31:29.292+00:00How ME/CFS Makes Us More Positive and Not Negative<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinGY5bRDutCG2ya1hzXcYcWZ9YJ8n4GPMBr0Xn19T0q-K3Vn0wjpOoBXWBCP6Su_tP_4HDI_wuf0z9-q0alriixrbQAYIiFflTSs9Eu_bFIkWJRkO8T-47zB7EpzSuMqtICHCjxRJdVk6p/s1600/Happy-Girl-on-the-beach-4805.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinGY5bRDutCG2ya1hzXcYcWZ9YJ8n4GPMBr0Xn19T0q-K3Vn0wjpOoBXWBCP6Su_tP_4HDI_wuf0z9-q0alriixrbQAYIiFflTSs9Eu_bFIkWJRkO8T-47zB7EpzSuMqtICHCjxRJdVk6p/s320/Happy-Girl-on-the-beach-4805.jpg" width="276" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;">As hard as it is living with a chronic illness, the truth is that ME/CFS makes us more positive and not negative. I've just finished writing a post on my main website about </span><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.aquarianinsight.com/how-to-stay-up-in-a-world-that-is-spiralling-down/" target="_blank"><b><i>How to Stay Up in a World that is Spiralling Down</i></b></a>. In it I outline my tips and advice on how to stay positive even when the world around us is increasingly negative. The fact is that everything I outline in that post has been learned from having ME. </span><br />
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<span style="background-color: white; font-family: Georgia, 'Times New Roman', serif;">As ME/CFS sufferers, we have more than our fair share of hardship and stress. Our lives are tough and yet we live. No matter how limited our lives may seem, we endure them and in most instances we do so with a smile. We live lives of pain and fatigue, we lose friends and social lives, some of us live severely restricted lives stuck in our homes or even beds, we lose financial security as our ability to work is affected and while all this and so much more is happening to us, we often receive little or no support from the medical world and even from friends and family. But the fact is that stress exacerbates our symptoms and just makes us so much more ill. Yet, we do it.</span><br />
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<span style="background-color: white; font-family: Georgia, 'Times New Roman', serif;">Some of the best friends I have are ME/CFS sufferers. They make me laugh, and lift me up no matter how bad things get. Even when ME/CFS sufferers have faced years of neglect and even abuse, they still hope and try every day, never giving up and fighting in any way they can.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">There is this ridiculous notion that being positive means slapping on a fake smile and pretending you feel great when you feel anything but. The truth is that any hopeful action, any act to continue is a sign of immense strength and positivity, whether it is done with a smile or with tears. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So every ME/CFS sufferer out there who can still smile and be kind, who gets out of bed, or even attempts to sit up or open his or her eyes, who fights for this illness to be recognised, who lends an ear to a friend, who writes about their experiences in a blog, or posts a photo expressing their life, who is trying to raise a family, or raising funds for charity, every ME/CFS sufferer who dares to hope that tomorrow will be better than today, know that you are an example to the rest of the world!</span><br />
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<a href="http://www.flickr.com/photos/free-stock/6882422150/" target="_blank"><span style="font-family: Georgia, Times New Roman, serif; font-size: x-small;">Image Credit</span></a></div>
Unknownnoreply@blogger.com0London, UK51.5170986 -0.1460838000000421751.200991099999996 -0.79153080000004217 51.8332061 0.49936319999995782tag:blogger.com,1999:blog-1124863971329958299.post-84252975264132090852013-02-18T18:45:00.000+00:002013-03-04T13:26:16.944+00:00Interview with Maria Mann - An ME Hero Who Saved My Life<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">Recently I had the chance to <a href="http://www.squidoo.com/interview-with-maria-mann-author-of-verity-reds-diary" target="_blank">interview Maria Mann</a>, author of the books <i><a href="http://the-me-cfs-ghost.blogspot.co.uk/2012/12/mecfs-book-review-verity-reds-diary.html" target="_blank">Verity Red's Diary: A Story of Surviving ME</a> </i>and<i> <a href="http://the-me-cfs-ghost.blogspot.co.uk/2012/12/mecfs-book-review-love-and-best-witches.html" target="_blank">Love & Best Witches</a></i>. It was really important for me to interview Maria Mann and to publish her answers because <i>Verity Red's Diary</i> literally saved my life.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Back at the beginning of 2006 I was a complete wreck. I had been ill for over 4 years and I had tried so many treatments to get better, but I was the most ill I had ever been. I was lost, depressed, alone and just ready to give up. Then I read <i>Verity Red's Diary </i>and it restored my hope. I was so ill and felt like the victim of everyone's ignorance, the doctors included. Some days I felt I was insane; how could I feel so ill and yet be receiving no help or understanding? Everything felt wrong. Then I read my experiences expressed so beautifully by Maria Mann and her Verity Red became the friend I so desperately needed. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">At that time in my life I thought I needed my old life back, or my health back, or even all my old friends back. But looking back now, I realise that even if by some miracle I had gotten one or all three of them back, it wouldn't have helped the trauma I was going through. What I needed more than anything was someone who understood my experiences. By reading Verity Red's Diary I realised for the first time that there were other people out there like me and it changed my life. It helped me to find other sufferers and I made some of the best friends I have ever had. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I know there are people out there who feel like I did back then. This is why I am so grateful for Maria Mann allowing me to interview her, because Verity Red has the power to help others, just like she helped me. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Read the Full Article: </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.squidoo.com/interview-with-maria-mann-author-of-verity-reds-diary" target="_blank">Interview with Maria Mann Author of 'Verity Red's Diary'</a></span></div>
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In the interview she talks about her own struggles with ME and also her inspirations for writing her books. I think she is also an inspiration, after all, if she can have the same illness as me and write books and retain a sense of humour after everything she has been through, then so can I. She is an example to us all.</div>
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<span style="font-size: large;">Read my reviews of Maria Mann's books:</span></div>
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<span style="font-size: large;"><a href="http://the-me-cfs-ghost.blogspot.co.uk/2012/12/mecfs-book-review-verity-reds-diary.html" target="_blank">Verity Red's Diary: A Story of Surviving ME</a></span></div>
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<span style="font-size: large;"><a href="http://the-me-cfs-ghost.blogspot.co.uk/2012/12/mecfs-book-review-love-and-best-witches.html" target="_blank">Love & Best Witches</a></span></div>
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Unknownnoreply@blogger.com0London, UK51.5170986 -0.1460838000000421751.200991099999996 -0.79153080000004217 51.8332061 0.49936319999995782tag:blogger.com,1999:blog-1124863971329958299.post-47853820715447349032013-02-17T08:47:00.000+00:002013-03-04T13:26:40.975+00:00Google AdSense FAIL!<span style="font-family: Georgia, Times New Roman, serif;">Yesterday I was browsing through my blog, making sure all was fine when I saw an advert displayed at the bottom of <a href="http://the-me-cfs-ghost.blogspot.co.uk/2013/02/dreaming-of-scorching-hot-climes.html" target="_blank">my last post</a> which was a total Google AdSense FAIL! Here's the ad:</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Yep, there's a honking great advert for a Funeral Planner. I know we complain that no-one takes ME/CFS seriously but that's taking it a little too far, don't you think?</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">It got me wondering, if I was a Funeral Director, would I advertise? I mean nobody likes to think of their death, so why would I want to remind people that they're going to die? But then again, it is a business like any other. But even if we admit that an ME/CFS Blog may not be the right place for a Funeral Planner advertisement, where would be the right place?</span>Unknownnoreply@blogger.com0London, UK51.5170986 -0.1460838000000421751.200991099999996 -0.79153080000004217 51.8332061 0.49936319999995782tag:blogger.com,1999:blog-1124863971329958299.post-12605090682843213472013-02-15T19:00:00.000+00:002013-03-04T13:27:09.302+00:00Dreaming of Scorching Hot Climes<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">Anyone who knows me or who has read my article </span><span style="font-family: Georgia, 'Times New Roman', serif;"><b><a href="http://www.squidoo.com/melting-to-death-in-the-sun" target="_blank">Melting to Death in the Sun: Life as a Reverse SAD Sufferer</a> </b>will be very surprised to hear that I am dreaming of scorching hot climes. I do not like summer, or hot weather at all. In fact, right from when I was a child I used to say I wanted to travel around the world living in perpetual autumn and winter. Then what is it that has me dreaming of scorching hot climes? My health of course.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">Like most people with ME/CFS different seasons and weather conditions affect my health and symptoms in different ways. Since I became ill in August 2001, there have been three times that I have been almost entirely freed of the shackles of ME/CFS symptoms, and even then one of those times I still experienced them, but the symptoms were reduced in their severity and I was able to manage them. The other two times were when I visited Portugal and Egypt. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I visited Portugal at the beginning of summer back in 2003. London was already hot and humid by the time I left. I had swollen joints and aching muscles and I was barely functioning. Some friends had arranged a trip to Portugal and they had invited me. We'd booked everything several months earlier, before the heat had struck. My friend later confessed that she was really worried I would not be able to make the trip or if I did that I would not be able to do anything while we were out there. But I made it and we headed down to the Algarve, in the south of Portugal. It was already blistering hot by the time we got there, but the hot, dry climate had a magical effect on me. In the one week we spent there I found myself feeling like I had not done in almost two years; the swelling was gone, my joints were pain free and flexible as were my muscles. I felt so good and at that time I had not been diagnosed with ME/CFS so I was convinced that all I needed was a break and that the old me was back to stay.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I arrived back in London happy and optimistic, convinced the nightmare was over. A couple of hours later, I was more ill than when I had left.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">The same thing happened when I visited Egypt; the transformation to my body was miraculous. It's not just that the muscle and joint pain disappears, or that the swelling disappears, it's other stranger things like food allergies just did not exist! I know because the five star hotel we were staying in had an impressive array of fresh breakfast rolls each morning and I just could not resist and I was fine, absolutely fine! I found myself eating so much and I lost over half a stone in one week! I even managed to go swimming. More than any of these, it was the mental clarity that really rocked me. When you have ME/CFS, you get something called a foggy brain, and us sufferers just get used to living with cotton wool for brains. I didn't even realise this until the clarity returned.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I did think about moving to a hotter country permanently. My parents were looking into buying a second home in Portugal, but for whatever reason, it never transpired. Then I had that brief period where my symptoms got better, and then I started my slippery slide down again and here I am dreaming of scorching hot climes again.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I love London and I love winter here, but I find myself trying to remember what it felt like to feel well in my body again, and it's becoming almost impossible to do so. I need to feel well in my body again...even if it's just for a week or so. </span><br />
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</span>Unknownnoreply@blogger.com2London, UK51.5170986 -0.1460838000000421751.200991099999996 -0.79153080000004217 51.8332061 0.49936319999995782