Saturday, 14 May 2011

My Brave Face. My Truth : Behind the Mask

I'm one of the 25% of people with my illness who are severely affected. I am completely bedbound. I have to lie almost completely flat most of the time, as even sitting can cause me to become completely exhausted very, very quickly, and cause my blood pressure and heart rate to soar. I have to be completely propped up by pillows all down each side of my body, and even under my arms to hold them up, as I'm simply too weak to do it for myself, and it cases a lot of pain to not have that support. I'm in almost constant severe pain.

I only manage to get out of bed 2-3 times a day, to drag myself upstairs to the bathroom, nearly fainting along the way because my blood pressure is so whacked out. I often don't have the energy to brush my teeth and am left with the choice to either allow my carer to brush them, or go without. I only have a shower once a week, able to do so only by taking some pretty strong codeine and drinking caffeine & glucose drinks beforehand. Afterwards I have a crash - markedly increased symptoms - including pain and exhaustion for usually several days, leaving little energy for other things I may need or want to do.

I am exhausted all the time. Not tired. Not fatigued. No ... it's this illnesses own special brand of exhaustion, where my body literally cannot cope with even the simplest of tasks. It's a bone-crushingly awful fatigue that often makes me feel like an elephant is sitting on me, and I have a rope tied around me pulling me down into the earth. There are times when I can't lift a cup, or feed myself, and my carer has to do so for me.

I live in my bed, in a bedroom in my parents house, because I lost my own home as I couldn't keep up the mortgage payments after being on disability benefits for several years. I live in semi-darkness as I can't face strong light. My curtains are constantly closed, so I can't even watch the world go by.

photo by chispita_666 via PhotoRee

At times I've been so ill that my carer has had to help me bathe, help me sit on the toilet. Often I've spent hours, weeks, months paralysed either permanently or the majority of the time, with my carer having to do everything for me.

Often even talking is too exhausting - and even when I can speak, my neuro issues are such that it's sometimes hard for me to make myself properly understood, because I'll be thinking one word and say another, often completed unrelated word. I also forget words all the time. I know that I know the word but I simply can't 'find' it in my brain. I lose my train of thought constantly ... and my notes have notes, because it's the only way I know to TRY to keep myself organised.

I have cardiac and (unrelated) gynaecological problems complicating my situation further and causing further sickness and disability.

The days when people actually see me, such as when family pop around to spend a little time here, what they're seeing is the result of days of rest beforehand to prepare myself, plus a huge load of painkillers and caffeine tablets/drinks in order to be able to function well for just a few hours, to cope with the visit. And, which they also don't see, as soon as they've left, I crash and suffer quite severely over the following days, or even weeks, from those few hours which for you were nothing at all. This is one of the reasons why ME is seen as an 'invisible' illness.

My posts on this blog more often than not take me hours to write, over a longer period of time, a little at a time. They are exhausting to write, physically, emotionally, and neurologically. I use the spell checker because my neuro problems are such that I often misspell words I know perfectly well how to spell ... and my jerking, shaking hands cause me to make typos. I also edit the posts carefully, because of my neuro issues. It takes me time to phrase things rightly, so that people understand what I'm really trying to say ... and I often substitute words for other, wrong words without even realising I've done it - and of course a spell checker doesn't pick that up!

And none of this really even begins to cover what I go through each and every day of my life.

My life is exhausting, frustrating, painful, and pretty extreme - though despite it all, I still have some joy in my life. My illness is Myalgic Encephalomyelitis : ME, an illness which affects hundreds of thousands of people in the UK - yet is one of the worst researched diseases in medicine today. Sadly, being given a diagnosis of ME is not only to be given a sentence to live with these kinds of symptoms for the foreseeable future, but it also sentences many of us to a lifetime of being disbelieved and abused by the medical community, and even by our friends and family.

I'm hoping that this post, and the video I've added to it, by Chlay : My Brave Face (I've tried to show my brave face here today, too!), will help you understand more about what it's like to actually live with this illness. Please pass this post onto your friends. Post it on Facebook or Twitter; Share it by email with friends; re-post it on your own blog with a link back to this one; print it out and hang it up at work - do whatever you can do to get the truth out there on this, International ME Awareness Day, May 12th.

The following video is by Chlay, and she explains very concisely what this illness is like, and how it's sufferers are treated. Chaly has released a charity single, 'Silently', for the ME Association. You can buy the single on Itunes for 79p. Please support this effort - even the smallest donations help massively!

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. Hello. I love to read your blog and feel like we have a lot in common. I am in my early 30's, and have been sick w/CFS and many other issues including a cardiac and gynocological issue like you for over 15 years. I was wondering if there was an email address I can contact you at? Maybe we can help each other through this. If you are interested in writing you can email me at Hope things get better for you soon. Hang in there and I love your blog.

    Take care,

  2. Hi Suzanne,
    Thanks so much for your comment. I'm so sorry it's taken me such a crazy long time to reply ... I've been struggling to keep up with pretty much everything recently.

    It's really nice to meet you. I'm just sorry to hear you've been going through so much though! I don't have a 'safe' email attached to this blog yet, but you should be able to email me through my google profile, here :
    You can also catch me on Twitter @SweetInTheGale if you're on there. :) I'd love to get to know you!

    Susannah x

  3. p.s. The links to my facebook profiles are also on my google profile if you'd like to send a friend request there. :)

  4. Think of you and sending healing thoughts your way.

  5. hi Susannah,

    I found your post as I was trying to find information relating to my symptoms and read your story. I'm very sorry for you and believe I am suffering from a milder version of ME, although I'm still undiagnosed. It's relieving to know that I'm not alone. My problem is complicated by squeezed arteries in my legs, thus making walking very painful. I am a Canadian Naval engineer who was a high functionning 18-stone muscular athlete, I won multiple national football, wrestling, and boxing competitions in Canada and in Britain. I exercised several times a day and never thought this could happen to me. Now, I can't even walk a few hundred meters to work without suffering a wide array of debilitating symptoms including nausea, chills, freezing, profuse sweating, shivering, faintness, vertigo, confusion, headaches, widespread pain and a feeling of panic to name a sample. Doctors will not let me drive as I fall asleep while driving during a flare-up, which occurs every time I try to go out and do anything. The only thing I can do when I'm having symptoms is get to a place where I can lay down and sleep after about an hour of shivering and crying from the pain, and I need to be bundled up in multiple layers to keep warm. Flare-ups last a day or two and take 3-4 days to get back to normal, which only stay normal if I'm house-bound and take it very easy, I'm even starting to get irritated by bright lights. I have been unable to work for 5 months now and my condition has been progressively worsening. This is a terrible disability as most doctors think it's psychological or worse that I'm faking it. I don't know what benefit my post will give but it makes me feel better to communicate with someone else who has a similar problem and maybe you'll feel not-quite-so alone. My sympathies and I hope you feel better eventually.