You wouldn’t necessarily know I was sick.
I can go out for dinner, walk short distances, hold conversations without yawning too much.
But – things aren’t right.
MadFather and MindReader tell me to stop measuring my health by having not been to work for months. And they’re right, in a way. What has happened is that I have had many, many more bad days than I did last year, but that those bad days are almost as good as my good days. To me, there is a significant difference because I feel shit, but on a bad day I still go out to dinner and do the hoovering. That was unprecedented a year ago.
I am not sure what happened to me last summer but it seems getting over whatever that was almost presents more of an obstacle than the glandular fever itself. It’s changed a lot of things. While the illness is milder, it seems to be much more up and down and about doing things but feeling ill, not doing nothing. It also seems to mean when I get a virus I will get better and then relapse and do this several times before actually getting better. I worry I will develop new symptoms from every virus and end up bedridden again.
I know too much about M.E though, because some people have bad periods, get better, relapse, and so on, and after a few times they stop recovering from the relapses. I can’t help but think what if that has happened to me now? I have been relapsing and remitting since the end of March. That is the longest it’s ever gone on. What if it actually doesn’t end?
I know this sounds dramatic, but I feel like I am tied to a train track, waiting for a slow oncoming train. I know what might be coming. I know my health is in many ways getting worse and not better. And yet I can’t do anything to stop it. I never knew how people lived with chronic illnesses or the worry that a cancer could return and yet I seem to be doing it.
Recovery presents itself in the absence of symptoms and this is why it is so easy to get downhearted and misjudge this illness. Sometimes I will recall symptoms from a long time ago – like my feet stinging in the mornings when I stepped out of bed, or crushing headaches, or the fainting, the nausea, the nosebleeds – and realise that I no longer have those. Most promising of all is that I can have 9 hours’ sleep now and not always be shattered. Considering, this time last year, needing 10 hours’ sleep was all that was wrong with me (and caused me no end of frustrations), this is progress. But it’s progression within regression and it leaves me very confused.
I am definitely better than I was a month ago. But I have felt ‘better’ three or four times during the past few months and each time it’s gone wrong again.
I feel better for having written about it, anyway.