Sometimes it’s hard to tell if I really am improving, in terms of my symptoms and how they affect me. On a day to day basis I struggle, always, with pain, migraines and fatigue, so it can be hard to remind myself that I am still on that journey, and technically it is going in the right direction.
When I first got sick there were days I barely moved off the sofa. Times my husband had to feed me as my arms were too weak. I couldn’t drive as it was too exhausting and I was scared of having a ‘shut down’ where my body literally stops working and I can’t move or talk for a while. But slowly, slowly, these episodes got fewer and far between. I started to be able to do just a little bit more and incorporate more activity into my daily life.
With a chronic illness like ME/CFS, though, recovery isn’t linear and feeling good one particular day doesn’t mean you are ‘cured’, which I learned the hard way (several times over actually) when I got a bit overexcited at feeling better than I had in a while and tried to do All The Things at once. Inevitably this led to a ‘crash’ where my pain and fatigue became severe and stopped me in my tracks again. It can be hard when this happens not to panic, not to think I am back where I started and I have to begin the recovery journey all over again. It can also be hard to believe that it will end, that at some point in a few days, or weeks, I will be over the worst of it and be able to function again.
Lately though, the crashes have become further apart and I am recovering much quicker. Days rather than weeks. I do think I am getting better at not pushing myself to the point of no return but even when my activity levels ramp up I’m finding my body is coping much better.
Last week, for example, we had a week’s break to Norfolk. I approach holidays nowadays with low expectations, happy just to spend time in a new place and if I manage a bit of exploration that’s a bonus. During the week, however, I managed more than I had in years. I walked down the biggest beach I’ve ever seen, explored several coastal towns and enjoyed a few drinks at a pub which stocked 150 gins. Am I cured? No. I still had pain, fatigue and migraines still needed to plan in my rest breaks but the amount I was able to do was such an improvement over six months ago. The week before, however, I had to take time off work and call in favours from friends to help with the kids as my fatigue was so bad. So yeah, it’s not linear. But definitely heading in the right direction.