Monday, 12 May 2014

M.E. Awareness Day 2014

Imagine being gripped by an inexplicable exhaustion: exhaustion so all encompassing that it feels like it is suffocating each and every cell in your body, completely draining you of all energy. You're too weak to lift your hands, or even move your head from side to side. Every muscle in your body is affected - your eye muscles fail and your vision is made even worse by the nystagmus (double vision). You can’t speak because the muscles in your face are too weak, and even if they weren’t your voice would be less than a whisper. Each breath is a struggle as your chest wall muscles are incredibly fatigued and nerve signals are disrupted: at its worst, it’s as if a thick belt is pulled tightly around your ribcage, and each breath hurts.

Imagine being in constant, agonising pain – pain so intense that your muscles feel like they are being torn from your body. The pressure at the back of your head is almost unbearable while the pain radiates from every limb. Your throat can feel raw and swollen, and you’re feverish – it’s like the ‘flu, but much worse than you’ve ever known before. Your body is so sensitive that the weight of the blanket on top of you feels like a lead weight crushing you, and your body aches from the pressure it exerts on the soft surface below. Even the minute pressure of your fingers lying against each other causes you unimaginable, burning pain. Imagine being too weak to scream, cry, or even explain what's hurting.

Imagine living your life in a darkened, silent room. The blinds and curtains block out all trace of light, while ear defenders protect you from noise - even the slightest cough could physically hurt as the sound booms through your body. Imagine being so ill that, while you crave the comfort of another person, having someone so much as hold your hand causes you pain and makes you feel even worse.

Imagine being paralysed – in your legs, perhaps, or down one side of your body, causing stroke-like symptoms. These symptoms can be constant, or can come and go. This often means waking up in the middle of the night, completely alone and terrified because you cannot feel parts of your body. Disturbance of sensation is another familiar occurrence, ranging from pins-and-needles, to tingling, numbness, burning, or neuropathic itching – as if tiny, red-hot needles are stabbing your skin.

Imagine feeling constantly dizzy, lightheaded, and faint. You’re not anxious and you’ve obviously not been exercising, but still your heart races as it booms in your chest, making your teeth chatter in time with the rapid beat. Even so much as being propped up slightly in bed is enough to cause you to pass out. When you’re eventually well enough to stand, you collapse regularly, and are often given no warning as your legs disappear from underneath you. 

Imagine enduring muscle spasms so intense they tear your muscles, sometimes developing into seizures/attacks in which the spasms spread to your face and eventually throat, intercostal muscles and diaphragm, restricting your breathing and making you gag, requiring an ambulance. Even more minor spasms and twitches cause awful discomfort, as every movement causes you additional pain and exhaustion – even if that movement is completely involuntary.

Imagine being unable to think, as your once articulate and intelligent mind now struggles to make sense of the world around you. Even the quietest voices sound booming and so unintelligible that it’s as if your own parents are speaking a foreign language. When you recover enough to have a conversation, you often forget the question you’ve asked before you’re given the answer. Basic mathematics, which you once accomplished with ease, is a mystery, and you have to resort to adding single-digit sums on your fingers. You struggle to find words, you can’t concentrate, and your short-term memory is completely non-existent.

Imagine feeling constantly nauseous – even as if you’ve been poisoned. You have no appetite - even if you could physically manage to eat, you wouldn’t want to. You may get so ill that you lose the ability to swallow, and have to be fed through a tube.

Imagine getting the ‘flu, or a virus, and never getting better. In fact, you get progressively worse, ending up housebound, or even bedbound. The illness remains for years, until you can no longer remember what ‘normal’ feels like, and every day is a struggle.

Imagine that you’re a prisoner in your own body, trapped for days, months, years on end.  Your family home becomes a prison, and the world outside takes on a mythical, dream-like quality. Your sentence is uncertain, as there’s no real prognosis. The only thing you’re certain of is that you will wake up tomorrow feeling awful. There is no cure, and no treatment. The most doctors can give you are management techniques, including medication such as strong painkillers for nerve pain. If you have a relapse – no matter how severe – there is no A&E you can turn to, or medical professional you can call, who could reverse or stabilise your symptoms. Sadly, despite the work of some brilliant small charities, there is no government funding into biomedical research, and severely ill patients and their families must raise the funds themselves. With this lack of funding, it is very hard to remain hopeful for the future.

Now imagine being dismissed, mocked, abused, and even vilified by those meant to protect and support you: the medical profession, the government - and, as it is for many sufferers, even your own family. You approach medical professionals in an incredibly vulnerable position and with hugely disabling symptoms, yet are told that your illness is your fault. The same symptoms that have destroyed life as you knew it, are deemed to be due to your bad or lazy attitude, or, even worse, you are told that you are not ill at all: you just have a belief that you are. Consultant after consultant dismisses you as ‘hysterical’, your seizures are dismissed as ‘panic attacks’, and you are told that this is ‘all in your mind’, or that you suffer from ‘anxiety’. Yes, there are a few brilliant doctors out there doing great work – for whom we are immensely grateful – as well as those doctors professional, sympathetic and decent enough to admit that they simply don’t know what is wrong with you, but the damage is done. You are made to feel as if you have done something terribly wrong, and that you have no right to experience the horrific symptoms you have no choice but to endure.

 You didn't ask to be so desperately ill. You certainly didn't want such controversy surrounding your incredibly complex illness: something entirely out of your control. You didn't choose this life.  All you want is to be better, and to live, not simply exist. You want answers, not uncertainty; support, not abuse. You ask for nothing more than to be treated as a person, with the same dignity that is offered to patients suffering from other chronic health conditions.

You’re imagining life with M.E.

M.E. is not just tiredness. While it is often (misleadingly) referred to as Chronic Fatigue Syndrome, it bears absolutely no resemblance to everyday ‘fatigue’. It is a serious, complex neurological (brain) illness with innumerable, debilitating symptoms, which affects almost all bodily systems. In the most severe cases, M.E. can be fatal (for more information see here, or read the stories of Sophia Mirza, and Emily Collingridge, who are amongst the many young sufferers who have died due to M.E. or complications thereof).

M.E. can be just as, if not more, disabling as other chronic health conditions, such as MS, or congestive heart failure. Hooper and Marshall, medical professionals who research ME, have written that: “Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” Moreover, Dr Nancy Klimas, who splits her clinical time between M.E patients and patients with AIDS, has stated: “I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.” 

Despite this, M.E. patients are constantly abused and mocked. Our suffering is belittled, ignored, and too often forgotten. If you want an example, please watch Ricky Gervais' comedy sketch, which can be found here (watch from 1.30), or read my post on 'Adding insult to injury'. Due to this total lack of understanding, children with M.E. not only have their childhood and teenage years cruelly snatched from them, but they risk being removed from their parents by social services and their mothers risk being wrongly diagnosed with M√ľnchausen by proxy (as the brilliant Dr Nigel Speight poignantly explains in this video and this talk).

Psychiatrists often (wrongly) take charge of cases, and some M.E. patients, such as Karina Hansen in Denmark, are forced to spend years in psychiatric hospitals. In 2003, Sophia Mirza was sectioned under the mental health act and placed in a locked room of a psychiatric hospital – despite the fact that she didn’t have a mental health condition: she had M.E (read more here). This led to such a deterioration in her health that, 2 years later, she died. She was so desperately unwell that, at her time of death, her mother could not even be in the same room as her. She died alone and in pain. Her postmortem report stated that her death was caused by M.E. The question is: how many more patients have to die before this illness is taken seriously?

Ignoring and dismissing this illness won't make it disappear. We may have lost our health, but we have certainly not lost our determination, resilience, and strength of character. We will fight to be heard, and to raise awareness, until the stigma that so unfairly surrounds this condition is a thing of the past, and proper biomedical research is carried out to produce a much-deserved treatment for M.E. sufferers. MS was once thought to be hysteria; autism was once believed to be the result of ‘refrigerator mothers’. To borrow The Bard’s phrase, the “truth will out” and, when it does, hopefully M.E. patients will be given the apology we deserve, and those who dismiss M.E. as ‘yuppie flu’ or ‘all in the mind’, will be silenced once and for all. But in order for this to become a reality, more awareness – and more research – is desperately needed.

Today is M.E. awareness day. Please, please, please spread this message: perhaps by sharing this post, by reposting a link to my blog, by watching and sharing the Voices from the Shadows clip (found by clicking here), or just by talking to family, friends, or colleagues about the true realities of this horrible illness. Do it for those suffering, for those who have suffered and passed away, and for those whose suffering could be prevented. M.E. isn't fussy as to who it will affect next; it could be you, a member of your family, or one of your friends.

Illness is illness, pain is pain, and suffering is suffering, whatever diagnostic label it comes under. M.E. sufferers are not 'lazy benefit scroungers', we're not 'workshy malingerers', and we're definitely not 'just tired'. We are very ill individuals who suffer from a very complex, physical illness. We desperately want treatment that will mean that we can hope for a future without pain, exhaustion, and inexplicably horrid illness.

Thank you so much for taking the time to read this. If you have a spare few minutes, I would urge you to watch the introduction to Voices from the Shadows: it's barely 5 minutes long, and explains so brilliantly, and poignantly, the true effects of this devastating illness. Alternatively, the trailer is just 3 minutes long, and is found by clicking here.

Please spread the word and help the world to see M.E this May 12th.

#May12thBlogBomb


Photo used here thanks to @katyfletcherx

14 comments:

  1. This is such an amazing, well written post Katharine! Well done you, it must have taken some hard work to get it written out and to be done so well, kudos to you! I'm slowly but surely making my way through everyone's posts today, there are so many!

    Happy awareness day spoonie sis!

    Hayley-Eszti | www.hayleyeszti.blogspot.com

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    1. Thanks so much, Hayley! It was a bit of a mammoth post - I had to use all my pacing skills and do it over a month, haha. Yes there are so many amazing posts but I'm so behind on them. Just going over to see yours now, I'm sure it'll be brilliant :)

      Happy awareness day to you, too! I love how much spoonie love and support there is going around at the moment, it's great. I hope this week is a good one for you :)

      Sending love and big hugs,
      Katharine
      xxx

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  2. " M.E. sufferers are not 'lazy benefit scroungers', we're not 'workshy malingerers', and we're definitely not 'just tired'."

    I'd beat up anyone who dared say such insulting things to my face... Except in one more of the Catch 22 situations which crop up with ME, with ME, I have neither the strength or energy.

    Thank you for spending valuable energy putting the blog together and publishing it.

    Chris, another 12th of May Blog Bomber.
    (I'm going to be paying for this, tomorrow.)

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    1. Hi Chris,

      Yes the Catch 22 is rather ironic, isn't it! Thankfully no-one has said such awful things to me directly (although some consultants have come close!) but unfortunately I have seen similar in the likes of the Daily Mail. It's hard to rise above it sometimes - I just grit my teeth and wish that M.E. could be transmitted through computer screens...

      I'm glad you liked my post. I've just hopped over and had a look at yours, and it's great. I hope that payback isn't too brutal for you - I wish that we could be excused from it seeing as it was in the name of ME Awareness, but sadly it doesn't work like that!

      Katharine

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  3. Wow you described it down to a T! Great write up, well done to you! :)

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  4. Hey Katharine,

    Wow, what an incredibly moving and powerful entry – it certainly taught me a lot about ME that I had no idea of. I think it is despicable how some people treat ME sufferers – why on earth would you be making it all up?!

    I wondered, is there a specific ME charity that you support that I could donate to? Of course, donating to any of them would help, but I was just interested.

    Thank you again for this inspiring entry!
    x

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    1. Hi Anna,

      Thank you so, so much for such a kind comment. I'm so glad that my blog has taught you a bit about M.E. and that M.E. Awareness Day has lived up to its name!

      That's ever so kind of you - if you'd like to donate you could check out my friend's JustGiving page (https://www.justgiving.com/Anna-Jones13). She's also called Anna and has been raising money for the ME Association this week, despite being really quite poorly. I like the ME Association as they support and give advice to people with ME as well as funding biomedical research (exactly what we need!), but ME Research UK and Invest in M.E. are amazing, too.

      Thank you again for commenting. It's comments like this that make me so happy and make everything seem worthwhile. If only everyone could be as understanding as you! :)

      Katharine
      x

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  5. Katharine, this post is just amazing. It is so well written, incredibly moving and really does get across so much that I would always like to get across about M.E. I came back especially to read it again.

    Faye
    freckles-and-all.blogspot.co.ul

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    1. Thanks so much, Faye! I'm glad that you liked the post :) It took a while to phrase things properly - this illness is so hard to describe and I always struggle to find the right words.
      I've loved reading your posts recently and have mentioned your Q&A about life with ME/CFS on my recent review of Awareness Month post.
      Love,
      Katharine
      xxx

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  6. Well said. It is such a tough illness....

    Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
    Over 100 posts resulted, and links to the others can be found here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

    Perhaps we’ll try this all again next year!

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    1. Thanks, Sally! And thank you so much for the idea - it's been brilliant and I've mentioned it in my post reviewing Awareness Month. I'd definitely be keen to do it all again next year! x

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  7. This is such an incredible post, you're an amazing writer :) I'm trying to catch up with everyone's posts from Awareness Week and this has been one of the best I've read so far. You've perfectly captured what it's like to live with ME and I hope it helps outsiders to understand.

    Lots of love!
    Meg | meg-says.com

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    1. Aw, thank you so much, Meg :) I've loved reading all the Awareness Week posts - I had to put off reading them until after my exams but they're more than worth the wait. Yours was definitely one of my favourites, and I've mentioned it in my recent post looking back on awareness month :)
      Love,
      Katharine
      xxx

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