Saturday, 9 November 2013

I Just Don't Care And That Is So Great!

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.
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. 
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.

Tuesday, 8 October 2013

Have You Been Cruel to An Ill Person?

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.  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.

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. 

Wednesday, 4 September 2013

BBC Inside Out Programme on Sikh Girls Being Groomed by Muslim Men

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.

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.

Saturday, 31 August 2013

The Bubblews Warning Label: Problems With Payments

Back in April I wrote a post titled Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog 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.

Wednesday, 14 August 2013

Are Juries More Likely to Find People Guilty Just Because They Are On Trial?

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.  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.  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.  So, I’m going to write about what I've been doing during that time.  I usually pick a DVD box set and watch some of my favourite TV series.  But after a while, even that wasn't quite hitting the spot, especially as my sleeping pattern has been totally out of whack.  I've recently found a new pass time and that is watching episodes of Dateline NBC on youtube. 

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.

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.

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.

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?

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.

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.

Christopher C Tapp New Trial Petition | GoPetition

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?

Monday, 3 June 2013

Ill But Still Trying for ME Awareness

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.  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.  

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.

Saturday, 27 April 2013

My Handsfree Samsung Tablet Lifesaver

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!

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.

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 tablet case.

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. 

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.

Tuesday, 23 April 2013

Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog

EDITED 31 August 2013: Please note I have written an update to my experience with Bubblews.  Please read: The Bubblews Warning Label: Problems With Payments

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 Bubblews.  I've been writing online for a few years now and my main writing has been on Squidoo 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.

Someone recommended Bubblews 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.

Here are the rules and Bubblews says that they have the right to remove (and not pay out) any account that partakes in the conduct listed below:

Thursday, 11 April 2013

An Ill Person's Reality is Seen as Negativity by the Positivity Police

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 [EDIT: 30th April 2014 I no longer write for Bubblews so all posts have no been moved to this blog].  I started off with an introductory piece on the illness called 'Myalgic Encephalomyelitis' 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 Life as an ME Sufferer 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.

But yesterday I wrote Have You Been Cruel to an Ill Person? 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, from the horror movies that I like to watch, to local places and attractions 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.

Monday, 8 April 2013

Life As An ME Sufferer

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.

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? 

Saturday, 6 April 2013

Football Match and a BPD Emotional Drive-By: Just Another Week For This ME Sufferer

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.  On Bank Holiday Monday my partner and I went to see Chelsea v Manchester United.  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.  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.  I wasn't really looking forward to going as I’m not really a football fan but I was adamant that I would go.  We hardly ever do anything as a couple anymore, what with me always being ill and he really wanted us to go.

Monday, 25 March 2013

That Awful Sunday Feeling

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.

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. 

Saturday, 23 March 2013

National Puppy Day 2013

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.

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.  

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.

Thank you so much!

Thursday, 21 March 2013

Being Positive Can Be Dangerous For Your Health

Yesterday I posted an article on Bubblews called 5 Reasons Being Positive Is Wrong, 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.  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 5 Reasons Being Positive Is Wrong, 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.

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.  

Monday, 18 March 2013

Fevre Dream and Sleepless Nights with a Touch of Reverse SAD

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 My German Shepherd Carer 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?

Monday, 4 March 2013

ME/CFS is NOT Demonic Possession

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.

I regularly write articles (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.

Thursday, 21 February 2013

My German Shepherd Carer

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.

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.

Wednesday, 20 February 2013

The Issue of Weight and ME/CFS

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.

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; 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.  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.

Tuesday, 19 February 2013

How ME/CFS Makes Us More Positive and Not Negative

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 How to Stay Up in a World that is Spiralling Down.  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.  

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.

Monday, 18 February 2013

Interview with Maria Mann - An ME Hero Who Saved My Life

Recently I had the chance to interview Maria Mann, author of the books Verity Red's Diary: A Story of Surviving ME and Love & Best Witches.  It was really important for me to interview Maria Mann and to publish her answers because Verity Red's Diary literally saved my life.

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 Verity Red's Diary 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.  

Sunday, 17 February 2013

Google AdSense FAIL!

Yesterday I was browsing through my blog, making sure all was fine when I saw an advert displayed at the bottom of my last post which was a total Google AdSense FAIL!  Here's the ad:

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?

Friday, 15 February 2013

Dreaming of Scorching Hot Climes

Anyone who knows me or who has read my article Melting to Death in the Sun: Life as a Reverse SAD Sufferer 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.

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.  

Tuesday, 12 February 2013

A Duvet is a Girl's Best Friend...When She Has ME/CFS

Marilyn may have proclaimed that Diamond's Are a Girl's Best Friend but on a day like today it is a duvet that is my best friend.  These past few days I have been trying to think of all the things that I am grateful for in my life and number one on that list right now is my big, warm fluffy duvet.  

I wake up in the morning feeling safe and warm, nestled in the feathery goodness of my duvet.  I leave it to use the bathroom and get a hot drink, and am then welcomed back into the coziness, which promises to help me get through the day.  The temptation to sink down and allow the duvet goodness to envelope me is always there, but for the day it must only partially support and comfort me as I sit up and try to do some work and get some writing done.  It is better than any desk I could sit at and more conducive to work than any office could be.

Monday, 11 February 2013

I Heart London

I love living in London and I live right in the heart of this fabulous city.  However, my health has not allowed me to get out and about much recently so I had really been looking forward to getting out and seeing even a part of it with visitors to the city.  I haven't posted in a while and yep, it's because I've been extremely ill.  I got so worked up and anxious about meeting my friend and his girlfriend while he was in London that I actually made myself very ill; I wasn't able to meet up with him at all. I barely even got to speak to him on the phone.

On Saturday morning, after weeks and weeks I actually managed to venture out.  My partner and I will hopefully be moving home later this year and instead of leaving everything to the last minute which I physically am unable to do anyway, we decided to venture out each Saturday morning before the weekend rush and explore a different part of London to have has many options as possible when we start flat-hunting.

Sunday, 3 February 2013

Robert Miller Hunger Strike for FDA Approval of Ampligen

I was looking through some of tweets and I came across Bob Miller's Hunger Strike, which he is doing to draw attention to the plight of ME/CFS sufferers in the USA and hoping that the FDA will approve Ampligen which has said to have helped ME/CFS sufferers.

I've been extremely ill the last couple of days and am having a hard time sitting up and typing, but I wanted to post this with Robert Miller's youtube video.  I'm sorry I can't write more at this time, but there is more information here.  I'd be interested to know how others feel about Ampligen, the chaos between the company that makes it and the FDA and also what Robert Miller is doing.

Here is the information from youtube along with his video:

Friday, 1 February 2013

Strange Allergies that Change From One Day to the Next

My current relapse is re-introducing me to many of the weird and (not-so) wonderful symptoms that were once a constant part of my life and the most recent to reappear are strange allergies that change from one day to the next.  I can't believe I forgot this one.  When I say allergy, I guess I mean intolerance; when certain foods or even scents cause a physiological response.  For me, certain foods irritate my lips, tongue, mouth and throat; causing swelling, itching and rawness.  There are some scents and chemicals that also cause similar reactions; usually an irritation of the throat, nose and ears.  I don't know how common a symptom this is with other ME/CFS sufferers, but it is particularly annoying and really sounds like one of those things that I'm just making up.

Thursday, 31 January 2013

When You Have A Chronic Illness Do You Ignore a New Symptom or Consult Your Doctor?

Image Credit
When you have a chronic illness one of the major decisions you have to make is whether you ignore a new symptom or consult your doctor.  This may not sound so huge, but actually it is.  It is physically and psychologically exhausting to always be aware of every ache and pain in ones body.  Yes, we're ill, but we have to also try to live as normal and full lives as possible and that is not going to be possible if we're always looking at the physical state of our bodies.

Wednesday, 30 January 2013

NHS Choices Rejects Honest Patient Review of GPs

NHS Choices claims to be the "online 'front door' to the NHS" and to give you "information you need to make choices about your health" but nothing could be further from the truth especially in the case of apparent patient reviews of GPs.

The NHS website allows you to find a GP in your area and has information about what services the surgery offers and you can read reviews left by patients.  

You are asked to rate the GP practice in the following different areas with 1-5 stars:
  • How likely are you to recommend this GP surgery to friends and family if they needed similar care or treatment?
  • Are you able to get an appointment when you want one?
  • Do the staff treat you with dignity and respect?
  • Does the surgery involve you in decisions about your care and treatment?
  • This GP practice provides accurate and up to date information on services and opening hours

Monday, 28 January 2013

A New Day, A New Doctor

I've been with my current doctor's surgery my whole life and since the normal spate of childhood illnesses and up until I became ill with ME/CFS in my mid-twenties, I really had little or no need for any medical attention.  However, even in the last ten years I have noticed a severe decline in the service provided by my surgery.

When I first started to get involved in ME/CFS groups, I heard so many horror stories about the way ME/CFS'ers were treated by their GPs.  I heard how one girl was told by her GP that she was hungover for three years, despite repeatedly telling her GP that she could not drink alcohol as it made her even more ill.  Others were accused of having a cold/flu, of imagining it, or even told off for wasting the doctor's time.  I was just so grateful that my doctor listened to me and sent me for test after test to investigate my symptoms, that I never doubted the medical care that I received.  My GP was always open to letting me try different medication.

Sunday, 27 January 2013

The Importance of Routine

It's very early on a Sunday morning and I lie in bed tapping out this post on my BB, thinking about wasted time and hoping I don't wake Daniele who is still asleep. I spend all week looking forward to the weekend when I get to spend quality time with him. We used to go out exploring but recently because of my health we can sometimes manage a short walk but not much more. Daniele suggested a short walk up to Knightsbridge yesterday as he needed to get some coffee pods for his Nespresso machine but I was not up to it. In fact I spent the whole day in bed, sleeping on and off. Saturday's are so precious that I can't help feeling the crushing disappointment of having wasted a whole one.

Thursday, 24 January 2013

Refuse To Be Ill?

Today I'm so ill and beyond exhausted - I don't just need someone to make me something to eat, but they also need to chew and swallow it for me too.  I posted something similar to that as my status message on Facebook (first mistake, I know) and my friend who will be visiting London next week responded with "Try to shape up for next Wednesday sweetie!!"  I know he means well and I get the sentiment, but it's just too much today and this comment and his subsequent comments have really upset me.

There's a quote by Edward G. Bulwer-Lytton:

Wednesday, 23 January 2013

ME/CFS and Deeper Shades of Birthday Blues

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For as long as I can remember I've never really cared for my birthday, and that sentiment has only become worse since I became ill.  That dreaded annual event rolled around again two days ago and I felt so down for weeks prior to it.  I’m 37 years old and I’m ill again and I just felt so tired, old and useless.  I rarely feel that way, but something about my birthday brings out the most dispirited side of me.

I was 25 when ME/CFS hit; I had love, laughter, friendship, a career in a brilliant company and plans, lots and lots of plans.  All of that went away for 10 years, so I was in my mid-thirties by the time I next resurfaced.  I managed to catch up a little but then I drowned again and now it seems the closer I get to 40, the more I feel the loss of that time.

Tuesday, 22 January 2013

A Positive ME/CFS Sufferer or a Negative One

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I’ve been asking myself a lot recently if I’m a positive ME/CFS sufferer or a negative one.  What do I mean by this?  The whole purpose of writing this blog and my other articles is that I’ve wanted to be able to provide a relatable account for other sufferers.  When I first became ill, talking to and reading about other sufferers is what helped me the most.  I’ve always felt it was my duty to put my story out there.  Before I come across as too much of a martyr, it has also helped me immensely to write about my experiences.  Actually, at first it was really painful to write about ME/CFS, but now it is easier and helps, especially when things aren’t so good.  Recently they haven’t been so good and that is what brings me back to wondering if I’m a positive ME/CFS sufferer or negative one.

Tuesday, 8 January 2013

Repeating Mistakes: Not Giving ME/CFS Its Dues

Just before Christmas I wrote A New Lesson in Loneliness For a ME/CFS Sufferer where I talked about not giving the illness its dues and how I would try to be more aware.  Not even a fortnight after that, I was making the same mistakes again.  A friend contacted me recently and told me that he will be visiting London with his girlfriend at the end of the month for a long weekend.  I was so excited and we were happily making plans for all the things we would do while they were here.  I vowed to keep my schedule free and make myself available while they were over.

The next day I went out for a walk and I have had a sore hip since then and yesterday nerve pain flared up in my thigh.  It was a painful reminder that once again I had totally forgotten that I have ME/CFS.  I don't understand how I keep doing this these days.  I lived years only being aware of my illness and symptoms; they ruled everything I did.  Now, it is almost like I forget I am ill; it stares me in the face all day every day and still I don't notice it.

Thursday, 3 January 2013

Can You Quit Smoking With Electronic Cigarettes? A Real Review From A Real Smoker

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I’m writing this after trying to find some real information about electronic cigarettes online.  What I mostly found were articles with regurgitated product information that did not tell me anything new, or I found myself having to trawl through forums for even the most basic info.  All I wanted was a real account from a smoker who had tried Electronic cigarettes; so here I’m going to recount my experiences.  I am not affiliated with any ecig company and am not making any money for my comments, good or bad.

I’ve been smoking for more years than I’d like to admit, but I quit for about 3yrs when I was very ill with ME; I was literally too ill to smoke.  Stupidly, I started up again, smoking around 5-10 a day, and then managed to quit again.  However, in 2009 I started smoking again after 1 year of quitting and I was smoking up to 15 cigarettes a day; when that became too expensive for me, I switched to rolling tobacco.  I tried giving up several times but I just couldn’t.  In January 2010 I saw the ‘Quit Smoking’ service in Boots and signed up for that.  They gave me patches and inhalators, and I quit for 4 months before starting up again.

Wednesday, 2 January 2013

Starting the New Year Crawling Out From Under a Relapse

It's day two of the New Year and I am only just crawling out from under my latest relapse.  I thought I was on an even keel health wise, having recovered from the flu that swept through me back in October, but how wrong I was.  I invited my sister over for dinner on 27th December, but it was all too much for me; far, far too much.  So I've been sleeping almost non-stop since then and in a lot of pain with joints and back.

But I'm feeling less dead today, so have been thinking about what I want from 2013.  While I don't make resolutions specifically for the New Year, I am always setting myself new goals and I am a constant dreamer.  My main goal for the coming weeks is to get some kind of routine down; I seem to be in a boom and bust cycle at the moment.  I need to establish a base level of what I can do and then try to gradually incorporate more activity from there.  This was my goal for 2012, but I more or less spent the year on the roller coaster of ME/CFS with little or no control.