Monday, 28 April 2014

It's not all about the money (but it helps!)

I'll admit I've been putting off writing this post. I've had a couple of months to write it but yet here I am with less than 2 weeks to go until M.E Awareness Day on May 12th and I can avoid it no longer. The reason for me dragging my heels is simple - normally I share my posts on Twitter to be read mainly by strangers, other M.E sufferers and the occasional real-life friend. This is different though. I plan to share this post with pretty much everyone I know, on Facebook, email and anywhere else I can think of. Even though it's no secret I'm ill with M.E, it's kind of scary!

M.E is much more than tiredness.
I experience all of these symptoms day to day.
On May 12th, I and some of my fellow M.E sufferers will be dressing as Princesses for the day and becoming Sleeping Beauties to raise cash for a biomedical trial that could potentially help us in our recovery from what is a truly devastating illness. Although we'd love you to sponsor us, that's not the only reason we're dressing up and in my opinion it's not the most important reason either. What matters most to me is raising awareness of M.E to make sure people know what it is, what its symptoms are, how it affects a person and most importantly, how best to deal with it. 

Everyone I speak to seems to know someone who has M.E yet no-one seems to really understand what this means. There are thousands of sufferers in this country alone, and many, like myself, have been made significantly worse by following incorrect advice from a medical profession that seems to be in a continued state of denial. With the right advice and support early on, by listening to your body and resting when necessary, it is possible to make a full recovery or at least get closer to previous energy levels. If, like me, you push through the pain and try to keep going then things will get worse. I want to make sure this doesn't happen to anyone else which is why sharing my story is so important.

So where to begin? I suppose I could start by telling you about the amazing people I have befriended on Twitter. They smile through the pain, laugh at the ridiculous of what we have to put up with and generally keep each other going with love, understanding and humour. God knows, we need it. Because of M.E, Many have lost their jobs and their independence. Some have had relationships fail. Some have even lost their homes and encountered abuse from their families because they simply won't believe this illness exists.

I could tell you about the inspirational Jessica Taylor who has been bedridden for the past 8 years. Her courage and determination despite her physical limitations is amazing and as well as living with the most severe M.E, she still manages somehow to run her Share A Star charity too. I could even tell you about Karina Hansen from Denmark, although I'm not sure you'd believe it possible in this day and age that a young woman could be forcibly taken from her family and held in a medical institution against her will. She is not allowed to see her parents and so far the family has been given no valid explanation as to why they cannot visit. All this just because the psychiatrists involved refuse to believe that M.E. is a real illness. Karina has been held there for over a year now. 

I could even write about how sufferers feel abandoned by the medical profession, coping with constant pain and isolation with little or no support, some of them like Fiona Smith and Jonathan Hales simply giving up hope and resorting to taking their own lives.

I could try and explain about all the confusion over whether to call this illness M.E, Chronic Fatigue, Post Viral Fatigue or how many still believe it is 'all in the mind', that we are simply lazy or depressed. After a while you learn to ignore the people who tell you all you need is exercise and a bit more fresh air. You become impervious to suggestions you're just not trying hard enough, or that you simply don't want to get well. I know I speak for all my fellow sufferers when I say that getting well is all we dream of. If it were merely a case of thinking happy thoughts and going for a run then there would not be so many of us still suffering. The World Health Organisation classes M.E as a neurological illness and yet all the funding in this country goes on psychological treatment such as CBT. This is why we are raising money to fund our own research - it's the only hope we have of finding a cure.

I could tell you all these things but I'm not sure you would be able to relate to any of it. When something doesn't directly affect you or someone you know it is easy to shrug it off, to believe it will never happen to you. I used to think like that but as I have discovered, at any moment it can all be taken away from you, your life changing beyond all recognition. So I know the best way to try and make you understand is tell you about me. 

I first became ill in August 2011 and by September I was too ill to work. I have been housebound (bar doctors' appointments) for well over six months. This seems to horrify healthy people, but I don't actually mind these days as I know leaving the house takes up too much of my limited energy and it can take me several days of complete bed rest to recover. My days are pretty much the same - I am able to get out of bed for around an hour at a time and then I will need around another hour lying in a quiet, dark place to recover. Currently I am up to a total of 7 hours a day out of bed and this is great because it wasn't so long ago I could only manage 3 or 4. 

If I don't rest regularly or for long enough then I will experience a worsening of my physical symptoms. Any stimulus, be it physical, mental, emotional or sensory will also impact negatively on my body. First, my vision blurs and my head starts to hurt. Then comes the real pain - my neck, shoulders, ribs, liver, arms and legs. I get hot flushes, heart palpitations and my hands and feet swell up. Next I begin to lose my cognitive skills. Co-ordination, balance, memory, speech, the ability to process information are all affected. At my worst I am unable to process and answer the simplest of questions. The final outcome, rather ironically, is fatigue. I rarely get tired these days. As you can imagine, all those other delightful symptoms have me crawling back under my duvet long before I get to the point of tiredness. 

Ear defenders and sunglasses are standard
fashion accessories these days!
For me however the worst of it is my increased sensitivity to sound, light and smell. I get this in varying degrees all the time and it means that for most of the time I am able to do nothing but lie in a quiet room with my eyes covered. I cannot do the things I love to help pass the time as they hurt my head too much and then come all those other nasty side effects. I can manage an hour or so of TV spread throughout the day. I can listen to one or two songs per day now although my beloved rock music is still out of bounds. Reading books is out - I can't process the information. I still manage my MOJO magazines although now it takes me a month to get through instead of a day. I can stand up for around 10 minutes and I spend a lot of time on Twitter. The small screen of my phone is easier to cope with and I can process tweets quite easily because they are short and to the point.  I find phone calls difficult and having visitors even more so - too much hustle and bustle for my poorly brain. I am slowly beginning to get back to my craft hobbies even though making the smallest of items can take weeks or even months. It sounds awful, but actually, life is pretty good for me right now because only a few months ago I could pretty much only get out of bed for meals and to go to the bathroom. I am improving, if only at a snail's pace. 

If I hadn't been told to 'push myself', that 'it's the exercise that will cure you' then I know I would not have had such a dramatic decline. When I first became ill I was able to leave the house for up to 4 hours a day. With the right advice from the start, perhaps I would even be completely well by now and even back at work. Still, there's no point dwelling on 'what ifs' as they won't help me get better. I just want to make sure that my story can hopefully help others and that by reading this, you'll be a little better prepared should this happen to you or someone close to you. It goes without saying that I hope none of you ever find yourself in this position. 

I have a long way to go before I get well but I have no doubt I will get there eventually. Believe it or not,  I am one of the lucky ones. I have the love and support of my family and friends, an amazing husband who has kept me smiling in even the darkest of times, and most importantly I have hope. I know what I need to do to get well and now I'm pacing myself and resting regularly I am seeing results. It would be lovely to improve more rapidly. With funding and research it is possible a cure may be found, or at the very least something to ease those nasty symptoms as normal painkillers just don't cut it. Which is where you come in....... You don't have to sponsor me but it would be fantastic if you could spare even a pound. One thing my illness has taught me is that it matters not how small the effort - what matters is to be heading in the right direction. Even a thousand mile journey starts with a single step. I know I'll get there some day - perhaps you'd like to help. 

You can sponsor me to become a princess for M.E Awareness Day here: www.justgiving.com/mookpixie

You can also sponsor my fellow princesses on our team page: www.justgiving.com/teams/MEprincesses

You can now buy Team Princess merchandise through The Big Sleep for M.E's website or purchase a Runnin' On Empty Tee like mine from Mama Chill. A portion of the price goes to Invest in M.E so you can do good whilst you look good!

Available in various colours and prices.
Caps, mugs and bags also available.
Me in unfamiliar upright position.

8 comments:

  1. Brilliant blog.
    Describes the nightmare that is ME extremely well, which most would agree is the near total lack of understanding on the part of doctors and the enormous damage that can be done to patients doing activity that was recommended by them.
    The sooner more research is done into the illness the better for hundreds of thousands of suffers.
    All the best of on May 12th and always.

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  2. Great blog, Charlotte! I truely believe your effort will make a difference. A lot of MEsufferers have different symptoms, but we all have the same story about how we were and are treated by doctors, therapists and even friends and family. We all pushed as hard as we could to regain our health but until it backfired, none of us know what was wrong with our poor body. We all came to a point where we started to listen to our bodies and say 'enough is enough'. But by then the road back up is a long long way. That's when the real fight begins. The support on twitter and fb is so powerful, thank you for doing what so many of us can't! XXX

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  3. Great blog and brilliantly explained. Only thing missing is how much effort I'm sure it took for you to write this and how much pay back you suffered as a result. Nice work Princess x

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  4. I think you've just about said it all. WE ARE ALL BEHIND YOU and will stay so until you are better - or at least better able to cope with your condition. We don't tweet but follow you on FB and the lovely phone calls you find the energy to make to us. Loads of love to you and your wonderful husband. M & D <3

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  5. You are a brave person to write this. I write about my own experiences with ME but I know it isn't always easy, especially when I plan to share with friends and family on FB etc. But we need more people like you who are not only raising money for biomedical research, but that are willing to share their own experiences and stories. Thank you for this.

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  6. Thanks for the comments guys - means a lot xxx

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  7. Annette (former colleague)2 May 2014 at 22:43

    Hi Charlotte,
    I am in awe of your couragousness in writing this blog and sharing your experiences. It is going to help so many people who are suffering with M.E. and give them hope. When I had post viral fatigue I felt so alone and reading this would have shown me that I was not alone and that would have made such a difference to my state of mind. You're outlook is so positive, it's inspiring! Much love xx

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  8. Great job Charlotte. Thanks so for doing this! And to your fellow princesses. I will share your blog.

    Despite having been disabled by ME for almost 15 years, close to housebound & bedbound, just able to get groceries and supplies the whole time time, it really surprises me how little the public knows. ME has been in WHO since 1969. Good biomedical research looking at the neurological, immune, cardiac, endocrine, autonomic nervous system.... (ie all body systems) symptoms have been going on since then. But no one seems to know that 25% are housebound to bedbound. 75% are too disable to work. We die early from it - one study said an average of 24 ys early. And while if ME is diagnosed and treated appropriately at the beginning the prognosis is much better, recovery is 0 - 6%.

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