Better than yesterday, worse than tomorrow

There is no cure for our condition. There isn’t even any decisive treatment or medication. Recovery stats and rates are far from encouraging. We have to accept that it is likely we will suffer from M.E for the rest of our lives. This could be it for most of us. We could be this poorly forever. I mentioned this to friends the other day and I got an ear-full from some about how it was an awful way to look at life and I was being negative. I don’t agree with them there. I was merely stating the facts of life with chronic illness. I wasn’t wallowing or feeling sorry for myself, just stating that I have to get my head around the fact that we may never make a full recovery.

At the same time we can’t give up hope. People have got better and returned to a normal, or near-normal life. We must keep going because it is our only option and our only chance of survival.

We have to admit defeat but remain hopeful at the same time. That is a very hard thing to achieve.

A non-sufferer friend asked me what the point of me getting out of bed was when I have nothing to do and nothing to get up for. I don’t see it like that. I have so much to get up for. I get out of bed everyday because, to me, everyday I get up is a day closer to normality and normalcy. When you are as poorly as we are, to be physically well enough to get out of bed is a huge achievement and something that should not be taken for granted. Like I’ve said before, our perspective is different now. If I don’t get up (on the days when I’m well enough to) I am not retraining my brain properly. Getting better is my job. In the same way that you get up to go to work, I get up to work on my recovery. Having a routine is part of my recovery. Staying in bed, when I am well enough to get up, is not a part of that routine. I don’t spend my days working in the conventional sense. I meet my baseline targets. This is the hardest and most challenging job I’ve ever had. It requires determination, strength and patience that I did not know I had.

I have made a handful of friends through online M.E support groups. I joke that my friends live in my laptop. The wonders of modern technology! I haven’t yet met any of them in real life but I count some of them as my closest friends. To have their friendship and support…well it means so much to me. To be in touch with people who are in the same boat as me has been…I can’t think of words good enough to describe it! My M.E journey would be much, much bleaker without them. We’re all in this together. Whatever lies ahead for each of us, we are never truly alone.

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