It’s a strange word. Relapse. I don’t really connect with it to be honest, it has never felt hugely meaningful to me. I have a chronic, unremitting illness so I’m always sick. Relapse implies that there are times when you are not relapsed … when you are well??? I’m never well, or anywhere approaching it. There are times when I can manage to do a certain amount whilst feeling dreadfully ill, and there are times when I can do really very little, whilst feeling dreadfully ill. What is relapse and remission for me? I’ve never really been able to quite get a handle on it.
I am learning though. Maybe it’s because this has happened relatively suddenly. My pattern has generally been one of steady decline, which with hindsight was probably a relapse, and almost imperceptibly slow improvement, which with hindsight was probably ‘remission’ (I don’t know a better word). I also have a bad habit of not noticing how unwell I am. I used to think it was because I was an optimistic, positive person; now I think it’s predominantly self-protective denial. I will think things like, ‘why am I so exhausted today’ even though I’m exhausted every day and I know why … I have ME. Part of me has just never accepted it, I think and I’m pretty uncomfortable with anything that describes or quantifies my experience.
I have been in a steady decline for a while now, but I hadn’t been thinking in terms of a relapse … because I never do! I was just finding life harder, feeling sicker and hoping it didn’t last too long. But then I got this virus that everyone had. Healthy people off work with it for weeks and taking twice as long to get over it, my husband and mum – who NEVER get sick – were both in bed with it (that’s when I started to panic!)
So I knew it was going to be bad and I knew it was going to be a while but I still just kept thinking in terms of getting over a bad patch. I’d be sick with the virus and then I’d need to recover from that. A normal cold that produces a snotty nose and a day or two of grumpiness in my family, usually takes me about 3 weeks to get over, but I generally hope to get back to where I was before I had the cold. I don’t consider that a relapse, I just consider it, what happens when you have ME and you catch a cold. I know that if I get a lot of colds, or if something else happens on top there is a risk I could relapse. I also know that my health takes a nosedive every winter, but again I don’t think of it as a relapse, it’s just what happens to me. Maybe it’s because my ME has never been very stable or predictable that I find it hard to quantify these things. I don’t really have a usual or normal, I’m always just how I am today.
Anyway, this relapse – because I am calling it a relapse – has been a little more clear-cut than usual. I no longer have symptoms of the virus we all had, I have an occasional cough but my husbands is worse, and yet I am suddenly able to do far less than I could before this virus hit me. I was starting to struggle to keep up with my weekly routine, so maybe that primed me to relapse, who knows, but things that were normal activities then, are impossible now. Before, being out of bed for most of the day was normal and I would go to bed for a rest during the day, and have bed days at the weekend. Now I am in bed unless I have to get up for a particular reason, and then only for short periods. I recently went with my children to a science fair they were taking part in. I planned it to arrive late, leave early and do as little as possible – I just wanted to be there. It was a huge over-estimation of what I could manage. I was terribly ill by the time I got home and in bed for days. Just a couple of months ago I was doing something similar 3 times a week, as well as being out of bed for most of the rest of the day and doing other bits and pieces.
Also, there is no discernible improvement. My recovery from colds is always on a go-slow, but this is at a standstill. It’s all I can do to just try and hold my ground and not slip further down. At the moment if I do everything ‘right’ I’m hoping for holding my ground, but the slightest misjudgement is losing me ground that I then can’t get back. That’s scary because it’s just not possible to always get it right, life is unpredictable and I’m not in control of it. I do my best but sometimes things just happen, and I have no wiggle room right now.
So, yeah. I have relapsed … I’m relapsing??? Not sure which. I suppose only time will tell. Will I hold my ground? Is that even possible? I really don’t know. I still hope that at some point I’ll stop slipping and be able to figure out where I’ve landed this time, and that when I do I’ll be able to gradually edge my way back up. Will I ever get back what to where I was? I’m losing hope that that is possible. It’s starting to feel like maybe this is how things will progress. But that insidious hope still does creep in; I do still hope for better times to come – for this to be a blip or a bad patch and that a good patch is coming. And I think I need to hope that, even if it’s not very likely, I think I just need to for now.