Home » Life with MS » It’s not always the MS

It’s not always the MS

It is 121 days until my finals exams and it safe to say that background panic levels are rising within me and some of my friends. It was helpful this week then, that at our weekly practice session I could show them my dodgy eyes for their educational benefit! I currently have something called nystagmus. In user-friendly language this means “wobbly eyes:” if I try to follow a pen my eyeball flits around. I don’t have it all the time, can’t always tell when I do have it, but having it is a sign that all is not 100% with my health.

It has been a stressful week. My husband has been away, the cat has been ill and forgetting a key event in the school calendar meant a sad little boy and lots of irrational breast-beating from yours truly. I have also started a new placement with a slightly intimidating supervisor who already patently thinks I am worthy of contempt. She asked me a simple question and, on the spot, my mind went blank. She curled her lip. I wanted to stamp my foot at shout “it’s not fair, I literally have patches of nothing where I used to have brain, how can I be expected to remember words like diabetes!*”  And then I started getting all “MS-y” again – deadness in my right arm, tingling in my right hand, dizzyness and swirly headaches (technical term.) This followed by days of nausea and lack of sleep and I was all set to sink into a gloom about the injections not working. Every other relapse was separated by six months, mine’s a month overdue but here it comes…

Or not it seems. In previous posts I have mentioned avoiding the MS fora but I had a bit of a look (mainly to see if I could blame the injections for my symptoms) and read repeated warnings about putting everything in life down to MS. There is a completely irrational part of me that believes that now I have MS that I won’t get anything else – I am immune to cancer or heart disease or anything else nasty. I also forget that in the autumn loads of people get colds. My husband has had a cold since the marathon. He tells me how difficult it is to feel achy and tired all the time (I gave him one of my looks).  Both of my children are croaky, and my university friends are one by one taking to their beds …. Hang on! Maybe I’ve just got a cold – sore throat, a bit feverish, a bit headachy, want to sit in my pyjamas all day – tick, tick, tick, tick (the last one is a tick but also normal for me.) And so the learning curve of living with a long-term condition goes on – if you have MS viruses give you MS symptoms, bacterial infections give you MS symptoms, stress gives you MS symptoms (my eccentric neurologist once advised me to avoid “stress, getting cross or ever getting tired … so give up the medicine and the children”), not getting enough sleep gives you MS symptoms (saw the same neurologist last week who resisted all efforts to get modafinil from him but did prescribe “three cans of red-bull a day”) even pre-menstrual hormone changes give you MS symptoms. And it’s OK. Well, I mean its a pain in the arse, but knowing that’s why I sometimes feel a bit off means a bit of me can stop being so scared of relapses … and I can focus all my fear on counting down the next 121 days…




*(For the reassurance of all future patients I can remember things but sometimes I can’t think quite as quickly as I used to.) Your children will be safe in my hands. I still remember how to make a puppet out of a surgical glove… 🙂


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