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.