…but don’t worry, not with you*

As I mentioned in a previous post about my MS, it’s a really variable disease. It affects everyone differently and it’s very difficult to tell how it’s going to progress.

It’s also variable on a day-to-day basis, at least that’s what I’m finding.

Infections and stress bring symptoms to the fore, but right now I’m finding that they seem to wax and wane for no discernible reason.

I’ve just gone from feeling much better last week, symptoms much less pronounced and mostly gone, to this week when they seem to be peaking and keeping me awake.

And it’s weeks like this one that leave me feeling let down by my body. It’s irrational I know, but I feel like I can’t trust my body. I’ve no idea whether this is just part of the normal ebb and flow of my symptoms, or the start of a relapse. This brings with it inevitable feelings of anxiety and fear about losing some movement or worse. And of course anxiety contributes to the sleeplessness, which makes the symptoms worse… I’m so glad I started meditating a year ago, it’s really helping.

My current symptoms probably aren’t anything to worry about. But I just don’t know and as a result feel like I can’t trust my body.

Which leads to feelings of anger about what this disease is taking away from me. I can’t give any certainty to plans and worry that I’ll just be so tired that I can’t meet my work commitments. Everyone is being brilliantly accommodating, but I’m having to make compromises I didn’t have to before.

There are times when I do manage to be quite relaxed about it, much less anxious and worried than I was pre-diagnosis. But there are other times when I find it all too much and start to feel angry.

I’m prompted to write this in part after scanning the #MultipleSclerosis hashtag on twitter yesterday. This was full of stories from blogs and support organisations of people smashing life with MS (no idea where that stream has got to today, hopefully it’s moved on).

There is definitely a time and place for stories of positivity, but it does need to be tempered otherwise it risks leaving people who are on a downer feeling worse. Given that I didn’t spot any tempering words yesterday I thought I’d write some today for anyone who might like to know that there are others in a similar boat, one that is basically seaworthy, but is currently taking on water and listing a little.

* a couple of people checked in with my after my post about the kind of support I want, that they were giving me what I need. I thought I should just be really clear that no-one is implicated in these feelings!