Yesterday when I was writing my last blog post I was so tired and achy I didn’t barely know what to do with myself. Dinner yesterday was easy, just to shove something in the oven for 20 mins, still I was so far gone in fatigue land I had to wait for Steve to come so the food could go in the oven. It was like my sofa was keeping me prisoner. When I get tired like this, it get’s very hard to talk to me, I have huge concentration difficulties and problems finding words.
In fact this is pretty much the only thing about my MS I have problems accepting, that it affects my cognition. I was always very good at school, got my head down over a book and just stayed there until it was finished. I would bring books along to anywhere and sit and read. I also was very good at concentrating in school and seemed to remember everything that had been said. One of my best friends used to call me his ambulating memory, and he would call me up to ask what he was meant to be doing rather then write anything down.
I first started noticing something was wrong, when I couldn’t really read on a train anymore, even if I loved the book, I just couldn’t concentrate or sometimes even understand. When I got my diagnose I read some info about MS and found out cognition was a common problem. So my first actual contact I had with the MS Trust I ordered the Cognition factsheet from them, and suddenly a lot started to make sense. But I still didn’t accept it, even though I more and more started to loose words and have more concentration problems. With the words I used to blame it on speaking two languages and when you are tired you might not find the right one in the right language. But most often when I loose a word I can’t find it in Swedish either. This is when I get very frustrated, I normally talk about 100 miles an hour in both languages and when the brain isn’t keeping up, I get angry. So when I start feeling like this I need to calm down a bit and hope that the person who I am with will help me, without interrupting as that makes it even worse.
I still don’t know if I really have accepted it yet, I once read this book , called the “Man who mistook his wife for a hat” (which makes for a great read by the way) and that made my cognition problems seem like a fart in space. But still it can cause problems, I had to ask to be moved to a quieter part of the office where I work so I could focus better, I used to sit close to telephones ringing all day. Some days I still feel like I could do with building my own little cubicle or wear a pair of blinkers. And it was hard to ask to be moved as I never wanted any special treatment and I felt like I was a nuisance. But I guess it was one step in the right direction of admitting that something isn’t 100% right.
Anyway, back to last night, so while Steve put the dinner in the oven, I went and had a relaxing bath, trying my best to get rid of all my aches and pain the natural way instead of taking paracetamol (which I by 2 am gave up on, as my head was still hurting like crazy so I had to have some painkillers). When I got up, Steve told me to come into the lounge to watch something he had paused on TV (my best friend the V-plus box!) and then he played this advert. This pretty much is exactly like what he sometimes does to me when I lose words. He finds it amusing…I don’t. Grrrr. But the advert made me laugh a lot. And they say laughter is the best medicine!
If you meet someone with MS that do have these type of problems….don’t do this to them, as you might end up getting punched!
Take care
xoxo
Hellie
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