This wretched relapse

The irony is, in February I sobbed on the living room floor about how getting covid could likely trigger a relapse.

Covid didn’t come for me but the relapse came anyway.

I’m experiencing a feeling of low level of guilt for sharing about this relapse.

For years I have harped on about how I’ve very slowly, very gradually, very gently made progress health wise.

There have been no magic pills or miracle treatments. No diet plans (although I am now gluten free) or detoxes. Instead, it was a natural improvement that I can attribute to luck, not fighting against what my body was screaming at me, and accepting this ‘new way of life’.

I know because they’ve told me, that my progress gave hope to others.

And while I was never anywhere near to working or living independently, I was so much better than I was between 2010-2014.

At best I could drive for 20 whole minutes once a week. I could have visitors for two whole hours a week. I could walk around a small supermarket. I could make my own lunch most days. I could usually wash my own hair. I could get dressed most days.

And then I had to share the news that things aren’t like that anymore. I cannot shower, not just because of the exertion but because of the stimulus of the noise and feel of the water. I cannot look after Delores, one of my sweet guinea pigs who has needed medication twice a day for two years. There is a lot I cannot do, and even before this relapse there was so little I was able to do because, well, I have M.E.

What is a relapse? A relapse, to me and the definition given by my CFS/ME clinic, is a return to the very worst and most severe time; starting right back at the beginning and taking months or years to ‘build’ my baseline back up again. With ten years of experience I’m not quite back at the start though.

I’ve lost a lot of self confidence. The rug has been pulled out from under me again so I’m not so sure of myself anymore.

There is not always a reason for a decline like this. But incase it offers any comfort to anyone, I believe this relapse is largely a result of an attempted burglary we had here back in July. There’s no need to go into more detail really. But it was a rather stressful and anxiety-inducing experience in which I tried to…run. We all know my body is no longer equipped for such things. I couldn’t run, of course, but I tried. And so I wonder if my body was maxed out somehow and then here we are.

I haven’t been at this level of severity, continuously, since before 2014. That’s not to say the last six years have been easy peasy or a walk in the park. But right now I am almost as ill as I was in The Beginning.

I am of course in a far favourable place than I was back in September 2010. I have ten years under my belt and a support system helping me emotionally, mentally and physically.

And while I am confident in the knowledge that this was not my fault, I still feel guilty that I had to tell you how things are; that they’re worse again. That I’ve relapsed. So many people are gutted for me. So many people don’t know what to say – this doesn’t follow the ideal that healing and progress is linear and things will always continue to get better.

A very small part of me feels I’ve let people down somehow; crushed their hopes for me and for themselves. But then I have a stern word with myself and remind myself that I am not, in fact, the centre of everyone else’s world!

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I’ve had one relapse before and I wrote about it here.