Thursday, 15 May 2014

Guest Post - Leanne's explanation of M.E


I've thought about doing this a million times. I've thought about writing it all down, about explaining it to people properly. I’ve thought about how to get my point across. But I’ve always hesitated. In the past when I’ve tried explaining it to people face to face I’ve got flustered, tongue-tied, mixed up and confused. I’ve also had it thrown back in my face and been told that I was wrong. So now I’ve decided it’s about time I actually wrote it down, explained properly without the risk of it getting in my way. But who am I kidding, its still going to get in the way. It’s always going to get in the way, but I’m not about to give in.





I’m not doing this for your sympathy; I’m not doing it to draw attention to myself. I’m doing it in the hope that at least one person will read it and change their mind; that at least one person will realise how destroying this illness can be. 
I suffer from ME, a chronic and debilitating illness, which is so unbelievably misunderstood. I’ve had it since I was 14, it came without any warning and it has certainly made itself known. It can affect anyone from aged 5 to fifty five; it can be mild and it can be severe, and it has a lot of different symptoms. I’m lucky, I’m only mild to moderately affected but it is still so very unforgiving. This is my attempt at explaining.



From my years of living with ME the one thing that I’ve realised people don’t understand the most is that there are consequences for every little thing we do. Be it going out for a little walk or even getting out of bed, we will pay for it. Our bodies will hate us for daring to do something. Some people can’t even sit up without risking days of intense pain and exhaustion. When I make plans I have to make sure I fit in at least half a day to a full days rest in-between; if I don’t I will pay for it. Sometimes I still pay for it after my days rest. Sometimes the consequences won’t make themselves known until a few days later, sometimes not until a week later. In order to do one thing I have to be prepared that I won’t be able to do something else. The consequences can be anything, from a headache to muscle ache, to being completely shattered and much worse.


Shattered? You’ve all felt it right? Sure, but an ME sufferers shattered is completely different to a healthy person’s shattered. We wake up shattered; our sleep does not refresh us like it does a healthy person. Think of how you feel after a hard day at school/work and the travelling you’ve done to get there and back, that’s how we feel when we’ve just woken up on a morning, if not a hell of a lot worse. Little things can exhaust us. On my bad days eating is exhausting. If you know me, you know how much I love eating! Imagine how it feels to be too tired to eat properly. Some people have to be tube fed because it is so exhausting.

If this is looking a little disjointed then I apologise; another symptom I suffer from is referred to as brain fog. Basically I struggle to find words, I have a poor memory, I can’t concentrate for long, and I get confused easily. If I’m speaking to you and I start mumbling it’s not deliberate; if I suddenly stop talking then chances are I’ve completely forgotten what I was saying. I struggle talking to people on the phone for longer than a few minutes because I have nothing to focus on. If you give me something to read I will probably have to read it a few times before it sinks in. I can see things but my brain won’t register that I’ve seen it; I can walk past you in the street but won’t realise its actually you until a few minutes later. I’m not being rude; my brain just won’t work as quickly as it should. When I’ve written essays and exams I have often repeated myself over and over because I’ve forgotten what I’ve written minutes after writing it. On my bad days I can’t even speak coherently, my sentences come out jumbled and I don’t make sense. 
This is the reason why I struggle explaining what ME is to people and how it affects me. When pressured to give an answer all these symptoms get worse, so I end up shrugging it off and avoiding the question.

A common (and very irritating) thing that you can say to an ME sufferer is “but you don’t look sick”. I’ve lost count of the number of times people have said this to me. Luckily I don’t need a wheelchair, I can walk without crutches or a stick, and so I must be healthy right? I find it extremely frustrating that people assume I am well because I don’t need help to walk and get around or because I don’t have problems that you can see straight away. I get mucky looks from little old ladies because I sometimes don’t give up my seat for them. I’ve heard people talk about me because I’ve commented that I’ve not been able to do something. Looks can be deceiving. Chances are that when you’ve seen me and spent time with me I’ve been having a good (for me) day. I don’t want people to see me when I’m having a bad day. Most of the time I wear make up because without it you can tell I’m ill. On days that I’ve gone out and forgotten to put concealer or blusher on I’ve had comments on how ill I look and people wanting to know what’s wrong with me. Once you get to know me you can see the slight changes depending on how I’m feeling; you’ll notice that I’m a bit paler than usual, a bit more quiet than normal, that I walk a bit slower, that I’m not as enthusiastic. But most people don’t see this, so most people don’t understand.

If you ask me how I am feeling 99% of the time I will answer “I’m fine”. This is because past experience has taught me that most people don’t really care about the answer. Most people ask because it’s polite. And most people don’t want to listen when you reel of a list of symptoms as long as your arm. You can literally see them switch off after you’ve mentioned the second symptom. So if I say I’m fine, I’m not, I’d just rather save the energy that an explanation takes.


Some other symptoms I suffer from include:
• Muscle pains

• Dizziness - on a bad day I will go dizzy and lose my balance whenever I stand up

• Fluctuating blood sugar levels - if I don’t eat every few hours I get weak and shaky, and sometimes I can black out

• Fluctuating body temperature - if I’m not dressed for the weather this is why; my temperature can be all over the place. This is the reason I’m usually wearing layers, so I can easily take things off or put more on. Generally the worse I feel the colder I am

• Sleep disturbance - my sleeping pattern isn’t really a pattern, sometimes I sleep sometimes I don’t. When I do sleep it never really refreshes me like normal sleep should. On average it takes me hours to even get to sleep, then I can wake up every hour or so.

Like I said I’m lucky. I know of people who are housebound, who are bedbound, who can’t even sit up for a few minutes. People who can’t tolerate daylight, whose bodies struggle to digest food. People who are paralysed, that can’t talk or see or hear. People whose bodies just shut down on them, people that have died. ME is grossly misunderstood; we do not choose to live this life. We do not inflict this on ourselves; this is not what we want. We have ambitions, we have dreams and we have places we want to be. ME is real and it is destroying lives. It is not a psychological illness, its symptoms are very much real and so are its consequences.

The more people that know, the better the chances are for every sufferer to be treated the way they deserve to be treated. If you have read this and learnt something then please pass it on. Spread the awareness, after all you are supposed to learn something new everyday right? If that’s made sense and you want to know more, feel free to ask. Or here are some good websites and videos:

AYME - a charity to support young people with ME.

A video about Severe ME






If you have any questions about this post, please do ask them


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2 comments:

  1. This is a brilliant description of ME Leanne! It's very eloquently written too... You showed that brain fog who's boss!
    Faye | freckles-and-all.com

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    1. I'm glad you think it's a well written post Faye - Leanne did indeed show Brain Fog who's boss! xx

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