Multiple Sclerosis – The Dark Humour of Invisible Illness

So no, I don’t have MS, but I was looking up articles on extreme fatigue and trying to see if it’s recommended to rest or just continue pushing oneself through it…I feel like pushing through during the week is killing me yet sleeping all day on weekends also makes it worse. And if I sleep all weekend or lie on the couch for more than a day then I feel guilty and end up not being able to mentally rest whilst I stress myself out. Never mind the body aches that come with sitting or lying down for extended periods of time. Worse than the lead weight feeling of moving around. It’s a lose-lose either way at this point.

I came across this article and I know MS is serious and it sucks but this was written with such dark humour that I actually giggled my way through it. I can really relate to the heaviness, the fatigue, the memory and brain fog and even sometimes the tingling or numbness. And I had a really good laugh at the end or it all:

“After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and
counseling is the answer.”

And my laughter was very much a “har har har, omg I totally TOTALLY feel this person” kind of laugh. Click here to read: “How Does MS Feel

Now I think any one with a chronic illness of some sort will totally identify with the above. I’ve really been battling at the moment because of a dip that started again nearly two weeks ago.When I get the chance to be on the couch/in bed for an entire day, feeling like I could sleep for a year, with aches and fuzzy brain and slow thought AND I still get up to help cook supper or make tea for myself and get asked if I’ll make coffee for everyone ‘whilst I’m at it.”…well I just smile and oblige or try pretend I don’t feel the judgement when I say that I can’t.

Here’s a little secret I wish ‘normal ‘ people would understand:
I HATE FEELING LIKE THIS!! I would not wish it on ANYONE. EVER. I don’t enjoy being couch bound. I don’t feel like this because I’m stressed or, the best judgement ever: Lazy. LAZY??! I have climbed out of bed every single day since this hit me. Every. Single. Day. I get up and I brush my hair and I make breakfast and then rest because I’m so out of breath and shaky. Then I try study a bit and read the same paragraphs over and over again hoping the words swimming around will eventually start making sense and stop flying out of my head as soon as I’ve read them. I then go to work in the afternoon. I feed, guide, educate, transport and talk to a pre-teen girl all with a smile on my face and try not to show her or my boss that I feel like death warmed up. Most times I’ll finish work and drive home only to then put together some kind of supper, most nights I cook for my mum too because she works until 7:15pm and I know the last thing she’ll want to do is cook. Plus if I plan on continuing with the anorexia recovery then I need to eat supper myself. Then I often sit and chat to my mum for a bit. After work on Wednesdays (like today) I also MC a pub quiz until around 10pm. And no I’m not dying, but I swear to god that sometimes I wish I were just so that I wouldn’t have to think about living with this unpredictable body for heaven knows how long.

So this is not how I feel all the time. The above is when I am really struggling. For the most part I can plod along and feel relatively good. But when this hits me, all I really want is some understanding. All I want it someone to say, ‘no, sit down, I’ll make that cup of tea.” All I want is for those around me to stop judging me and rolling their eyes and telling me “if you maybe go to bed a bit earlier.” or “maybe it’s depression” or “I’m sure if you exercise more you’ll get much better.”
HAH! I went to yoga on Monday morning thinking I’d try the theory and perhaps it would energise me. I made it through half the class. I was then so utterly shaky and exhausted that the rest of the day sucked. Horribly. So no…it didn’t help. And I felt so nauseous and dizzy by the end of the day that I just wanted to curl up into a little ball. But I still cooked supper.

I’m just so tired of how people think invisible illness is a big joke that we make up in our heads. If I had cancer I wouldn’t be told to suck it up and get on with it. If I had Motor Neuron Disease or some other totally horrendous visible illness I would not be told to take an anti depressant or ‘just learn to stop stressing’. Invisible disabilities fucking suck. I don’t know why the hell my soul chose this body and all it’s issues but there better be a damn fine reason for these lessons. The worst of it is my boyfriend and how little he gives a fuck when I hit a bad patch in health. It’s like I am making it all up and I don’t get so much as a sympathetic hug. I just get told I’m over reacting and I’m not dying. All I want is someone just show me a bit of kindness when I hit a dip like this. Am I asking too much? Am I seriously that selfish for wanting to be cared for as I would care for someone if they had flu or a bad day? Why is it so difficult for someone to offer me a cup of goddamn tea…

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