So that’s that then. Medical school all over. My job starts at the end of July (conveniently just as the children break up) so until then I am on “holiday.” Three weeks in and so far I have moaned about it to everyone I have seen. I am VERY bad at relaxing; a spa day would be my idea of purgatory. I like being busy, and having a massive to-do list which I can then also moan about to everyone I see. Don’t get me wrong, I have a mini “bucket lost” for this time off which includes experimenting with kitchen gadgets, reading the books on every major prize shortlist this year and crocheting a blanket but three weeks in I don’t seem to have made any progress with these projects because my body has reacted as it always does to “down-time” by shutting itself down.
If you have been following the blog you’ll know that I have been relapse free for almost a year now since I started on the copaxone. I have had a couple of wobbles in the last 12 months but am actually very well healthwise at the moment. Apart from the fatigue that hit me last week. MS doesn’t have many universal symptoms but fatigue is one that seems to affect everyone. The “science’ behind it seems to be that it requires more energy to send signals along unmyelinated nerves and therefore our brains get tired much quicker than normal (sadly it doesn’t seem to be that we burn off more calories as a result!) Read anything by anyone with MS and the battle with daily fatigue features repeatedly. It’s like wading through treacle, and sometimes like wading through treacle with legs that REALLY hurt. The only other time I have experienced fatigue like this is when I was in the first trimester of pregnancy when it is a struggle to put one foot in front of another and it can strike at any time while you are doing anything. But in my case it is much, much worse when I’m not working.
So last week, when I didn’t have work to provide structure to my day, my body decided that the lack of adrenaline was a cue to make me lie on the sofa and watch programmes about wedding dresses. For two days. I felt miserable about all the things I wanted to do and couldn’t and anxious that I would never get up again! Eventually the wave of fatigue passed and this week has been better but each day needs to have a to-do list else the sofa will drag me back.
Which makes me reflect on the treatment of MS fatigue generally. Until recently there were two drugs licenced for MS fatigue – amantadine and modafinil. The latter was the most effective but, unfortunately, also has the most significant side effects so the licence has been withdrawn. Conversations with my neurologist about this drug tend to go:
Me: please can I have modafanil, I think it will help me get through junior doctor hours?
Me: Oh go on.
And repeat until he finally tells me to get lost (in the politest, most charming way.) The specialist nurse who had witnessed this last time then referred me for a fatigue management course. I didn’t go. I know they can be helpful to many people but I know about sleep hygiene and the principles of energy conservation but this course would say nothing to me about how to manage a 48 hour working week with running a home and raising two children. Afternoon naps weren’t going to be an option. Part-time work is currently not an option. And, at the moment, NOT going to work makes the fatigue worse. There is something to be said for a reason to get out of bed in the morning and keep going all day. So work will be my drug. A busy ward round will be my occupational therapy. And the next four weeks need filling so that I don’t lie back down and start thinking I will never get back up.