24 July 2015

A Day in the Life of M.E.

Today's post comes after, admittedly, a hard couple of weeks.

I have chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or M.E., and I'm not very good at dealing with it. I don't mean that I'm a bad patient and difficult to live with (well, my boyfriend might disagree!) but that I really struggle to accept the fact that I have this condition.

You see, before I was diagnosed (and perhaps even still now a little bit?) I used to scoff at people who said they had CFS. I used to think that they were just making a fuss, and were simply tired like the rest of us but looking for a medical label to put on it. I'm ashamed to say that in my head, I saw it as a made-up disease.

So when my GP told me in 2013 that I had CFS, my reaction was mainly one of horror. How on earth could I have a condition that I didn't even believe was real? The horror was swiftly followed by embarrassment - I couldn't tell my friends that I had M.E.! They felt the same way I did - they'd laugh, tell me to stop being so silly, we all knew that M.E. didn't exist.

I was referred to a specialist chronic fatigue centre, and visited them in the summer of 2013 with my parents. It was clear, my doctor said, that I had CFS - I was suffering with 10+ of the symptoms commonly attributed to it. I was told that I would need to take it easy - that no, I probably shouldn't think about starting tennis back up again in the autumn, and that I should lie in until 10am every morning if I wanted to. Did they not understand? Did they not understand that as a young woman in my twenties, I wanted to go and play tennis? And that with a full time job, I didn't really have the option to lie in bed all morning? I'd made a decision; I was going to carry on as normal. It was mind over matter.

Two years down the line, and I'm happy to admit that I was wrong about a few things. Firstly, CFS is not a made-up condition. I don't understand it; I don't understand what has caused it, and why some of us suffer from it and some of us don't. But I know for sure that it is not a case of just simple tiredness. Secondly, I was wrong to think that I could just ignore my diagnosis. Sure, I can go for months and months without any symptoms at all - people will ask me how I'm coping with it all, and I almost forget that I was ever diagnosed in the first place. But then, I have bad phases. "Flare-ups" is what my mum calls them. And I've been living with a horrible, ugly flare-up this last few weeks.

It's hard to describe what CFS is like when it's bad. You're tired, obviously - but it's a different kind of tired to how you feel if you've had a late night or a bout of insomnia. No matter how much sleep you get, it doesn't seem to touch it - my doctor described it as unrefreshing sleep, and I can't think of a better way of putting it. Your whole body aches as if you've run a marathon - I get aches in my shoulders and hips, a deep, almost dragging sensation which of course makes me want to lie on the sofa and not move. Your concentration is affected, your focus gone - and no amount of caffeine can fix it! You start to feel low in mood from what feels like never-ending fatigue (just think how you get grumpy if you're feeling tired!) and more than anything, you get fed up.

The thing that I can't stand is how lazy I feel. Over the past few days I have barely moved from the sofa because I haven't had the energy to do so. People that know me will know that I never stop doing stuff; I always have a to-do list the length of my arm, and I'm never sat still twiddling my thumbs. I love being busy - so to be confined to my living room, knowing that I have things to do but I can't do them, is unbearable. (It's not all bad - I have managed to get through a lot of my Gossip Girl and Desperate Housewives boxsets...)

Why am I telling you this? Why I am writing quite a gloomy post on what is usually my light-hearted, fun blog about baking and dresses? Because I hope that I can change some people's perceptions about CFS. This is a condition which has a lot of bad press; for those of you who don't know, there has been a huge amount of controversy surrounding the disease. This is mainly why I, and many others, have such negative opinions on it. So many doctors and health professionals are still to this day adamant that CFS does not exist. There are constantly arguments over whether the cause of the fatigue is physiological (many believe it to be the body's reaction to a viral illness) or psychological.

I don't want your sympathy - hell, half of the people I know aren't even aware I have CFS! No, all I want is for you to be a little bit more open-minded when it comes to this condition. Please don't be like I was - rolling my eyes at the mention of it, unsympathetic. Just note these three things:

1) CFS much more commonly affects hard-working professionals, such as doctors, lawyers and businessmen/women. My doctor told me that in all his years of working with people with CFS, he has never once met a lazy person. What I'm trying to say is please don't think I'm lazy!

2) There's a lot that's unknown about CFS - hence the two names for the condition, the arguments, the controversies. But that doesn't mean it doesn't exist. A lot was (and actually in some cases, still is) unknown about cancer and heart disease, and yet their existence was never questioned. Funding was provided for research into these conditions instead.

3) Next time you hear someone mocking CFS/ME, please just take a second to remember this post, and don't just nod and agree with them.

Right - time to get down off my soapbox. I need to go and do some housework as we have some lovely people coming to stay this weekend - oh, and I'm off out for dinner tonight. Yes, I probably shouldn't be doing that, and yes, I should probably give myself a few more days of quiet on the sofa.

But hey -  I did say at the beginning that I'm not very good at dealing with it!


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