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… 🙂


Let’s get physical?

running   Last weekend Mr C, my sister and a number of friends ran the local half marathon. He completed it in a respectable time and has been laid up with the “flu” since. For me and the children it was a great event – meeting up with other families, dodging flying lucozade bottles, waving our banner, and even beating the three runners right at the back as we made our way around the course towards a pub lunch. As I watched I felt a familiar stirring of “oh, that looks like a challenge, maybe I could do that…” but, I am happy to say, I have firmly suppressed such a ridiculous idea.

Facebook tells me that Stuart Nixon, a man who struggles to walk 10metres at a time due to his MS, is undertaking a challenge to walk 60km in nine days.  This is incredible stuff, and reinforces that I COULD do a half marathon if I put my mind to it. But the sad truth is that I was physically lazy before my diagnosis and the MS has not helped me find my inner Green Goddess. My list of excuses for not doing exercise is almost endless but most of them are pretty convincing (to me at least). I didn’t exercise when I was teaching because I was at work all the time and I didn’t like going to the gym; I didn’t exercise when my children were tiny because I was either at work or looking after tiny children or eating biscuits or going out with friends eager to relieve the shell-shock of having had children (and I didn’t like going to the gym); I didn’t exercise when I started medical school because I spent most of my free evenings staring at anatomy textbooks in terror and comforting myself with chocolate (and could no longer afford to go to a gym). Don’t get me wrong, I did bits of exercise – occasional pilates, “Salsacise”, yoga and even Zumba. I rode my bike and even went for the occasional swim but if I could find an excuse not to do it I would grab hold of that excuse with both hands.

And thus has been my reaction to my diagnosis. To me dizziness, muscle aches, fatigue and periodic lack of usable limbs have meant that, whilst refusing to believe I was “ill”, I had mentally let go of the guilt about not doing regular exercise. This letting go was reinforced by reading that I can’t do any exercise that raises my core body temperature or else risk a relapse so that rules out the fun stuff (ie the dancing) and so I was resigned to sitting with my feet up of an evening drinking Dr Pepper.

But there are two flies in my ointment of guilt-free sloth.

1) I am superficial and vain and I don’t want to get fat. As I approach another big birthday I calculate I have put on a stone in the last decade. Given this was a decade in which I stopped smoking and had two children I don’t think that is too shabby. But I don’t want to get any heavier and I REALLY love food. I recently tried the only drug licenced for MS fatigue, Amantadine, which didn’t really help the fatigue but did remove my appetite. This was a pleasant side-effect whilst it lasted but it was temporary and now the tablets join all the others in the drawer. I could give the 5:2 diet a go but every other feeble attempt at watching what I eat in the past had led to me looking so feeble by 11am that nurses keep offering to check my blood sugar.

2) While I wasn’t looking almost every single one of my friends has started running. Even the ones who resolutely declared they never would. It’s like an epidemic has struck those nearing or just past forty. Frankly it’s a little unnerving and I find myself seeking out those who don’t own running shoes, only to find they are going on collective bike rides or fitting in the odd spinning class here and there. I’ve gone from the middle of a peer group too busy to exercise and alleviating work and home pressure with crisps, to an outsider bemused that they all suddenly own some lycra!

So, it is probably time to find the jogging bottoms with the elasticated waist and get myself back to a pilates class (no cardiovascular exertion and at least it is not as dull as yoga – who in their right mind wants to go to a church hall to lie on a dusty floor to relax – I’ve got candy to crush!) I suppose I could take the university up on their offer of free classes if I wasn’t refusing to engage with them as the email offer was addressed to “dear disabled student.” Struclty’s back on but I don’t think leading a small child up and down a tiny living room in “hold” or “impressing” them with my Charleston is going to do much for the expanding waistline so I better go and check out the local leisure centre listings … but there will be NO running.