Wednesday, 11 May 2016

'So you're ill... every day?!'

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'So you're ill...every day?!' she says with a confused look across her face. 'Yes, every day' I reply.

I don't know if the words 'every day' feel like they're big enough when describing how long I've been unwell for. I could say I have been poorly 24/7 for the past 9 years, which is a pretty big chunk of my life, but let's be honest - we don't want to depress the poor woman who's only trying to understand.

Today, on the 12th May, is ME Awareness Day. A condition which is largely misunderstood, but is also now becoming increasingly common. Back in the early days of my diagnosis it was rarely heard of, but even though the condition is now more recognised,  the stigma attached is still very apparent.

'So, what is ME?'. My reply, 'I get tired a lot + I have a lot of pain'. I don't know why I give such a short + vague answer. I obviously don't want to lecture poor soul to death but I also don't particularly like talking about the impact it has on me. Anyways, it's hard to put into words.

I don't think I can even begin to list the symptoms of it never mind the treatment I require. For example; this week. I've seen a physio, a psychologist, a gastroenterologist, an acupuncturist, an occupational therapist, a gp and a social worker. I've had x-rays, tubes, needles and had fainting, multiple dislocations, seizures + meltdowns. Despite being ill for so long I get new symptoms + complications every week, and although I have number of other chronic + life limiting conditions, the majority play hand in hand with my ME. I'm a medical mess, but to think most of these things have all stemmed from one illness is astonishing.

What you see definitely isn't what you get with this illness. It's invisible. Which makes the understanding of it ten times harder. Most people will just see me on my occasional appearance at the pub on a Friday night. The amount of planning I need to do just to go out for an hour is insane. It literally takes me a weeks notice to work out how I'll manage to get out on a Friday night. I know if I go out on Friday I can't do anything else that day and the day after it - literally. Everything needs to be planned to the finest detail, from working out if I can walk from the car to taking my tablets at a certain time so my pain meds kick in whilst I'm out. I'd go into detail expanding this, but it'd be a rather long blog post so I'll stop there.

As with everyone, social media tends to only portray life's 'best bits'. The only glimpse you get that I'm ill is the occasional wheelchair picture. I don't want to be too negative + show you at my worse, because it is quite frightening. I watched a video not so long ago taken when I was screaming in agony from a seizure and it's not something I'd want anyone to see let alone experience. I want to help people gain a better understanding about my conditions, but not terrify them in the process. I usually post (a lot) of photos of me with my make-up on, smiling + outside. But it can be a false picture and maybe it's up to me to be a bit more realistic with things I share. I've learnt though, I don't have to explain it to everyone. It doesn't matter if some people think I'm that 'well' all the time, the ones who care, ask.

So, to my final question, 'Are you going to get better?'. This is the most common question, and in all honesty, I don't know. I'm aware I'm a complex case + I've been ill for quite a long time with very slow progress. I've been told no and I've been told maybe. And that's all I can really say. I think the most important thing is focusing on now + how you can support your loved one going through ME. It could be a long + bumpy road, but even a small gesture like a text to check how they are can brighten up someones day. One of the toughest things to understand is that ME fluctuates so much, so what can work one day might not work another. But, talk to us, we can tell you more about how to help + explaining more complex, but necessary things like pacing and the spoon theory.

I do still struggle a lot, but I'm so thankful for where I am today, even though I know I have a long road a head of me. I've been very severely affected to the point where I was paralysed and couldn't even feed myself, but I've also been well enough to travel to London to see my friends for a weekend. I currently still have a very high care need, with both agency staff/hospital + my family looking after me and supporting even doing the tiniest tasks like helping me get ready and cooking.  I know now I relapse about twice a year and I just make the most of what I can do at the moment. ME has taught me a lot, from who my friends are to learning to love new things. It's all a journey for myself and all other ME sufferers, so I hope you can join us in supporting us both now and to find a cure.


Kate x

www.ayme.org.uk
www.smileforme.org.uk
http://www.itv.com/news/tyne-tees/update/2013-05-08/teenager-with-m-e-says-shes-accused-of-exaggerating-her-illness/


3 comments :

  1. Hi kate, im sorry you have to suffer so, I have ms and completely understand your wish to be visible only when you are at your best and how that confuses people as they assume that means you are better. The inability to plan anything ahead of a few hours takes its toll on friendships too; usually when you really need them most. Your blog is informative whithout being self absorbed. You should be proud of your work and be in no doubt people like me thank you so much for putting such difficult things into words that help us explain to friends and family how we feel. I hope there is normality on its way to you soon. Your friend jen xx

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    1. Aw Jenny, thank you ever so much! Your kind words have really touched me - definitely made writing this worthwhile. Hope you're having an 'ok' day, sending all my love xx

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  2. Hi kate, im sorry you have to suffer so, I have ms and completely understand your wish to be visible only when you are at your best and how that confuses people as they assume that means you are better. The inability to plan anything ahead of a few hours takes its toll on friendships too; usually when you really need them most. Your blog is informative whithout being self absorbed. You should be proud of your work and be in no doubt people like me thank you so much for putting such difficult things into words that help us explain to friends and family how we feel. I hope there is normality on its way to you soon. Your friend jen xx

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