I had a fairly ‘good’ (and by ‘good’ I mean good by my ME standards) few days at the end of September/beginning of October. I should probably describe them as ‘better’ days, rather than ‘good’. ‘Better’ however doesn’t mean, “Woo hoo I’m better!”. It means better than normal, but still with symptoms and daily reminders that I have a chronic illness. ME isn’t so kind as to give me a symptom free day, that would be far too much to ask.
However, since my good/better days I have gone downhill, feeling steadily worse as the days go on. Of course I can’t help but think of all sorts of reasons as to why this would happen. Did I overdo it while I was feeling ‘better’? Possibly. That would be the classic boom and bust cycle* that ME folks are often guilty of getting into. Or, and this is my biggest fear, is this my new normal? I never feel well, but for the last two weeks/week and a half I have felt utterly dreadful. I have felt this bad on previous occasions (since ME), so it’s not exactly unusual, but it doesn’t usually last this long, not with these particular symptoms. The thought that this could be my ME worsening, permanently, is the most terrifying thing I can imagine happening to me. For me, that would be a fate worse than death, honestly.
Anyway, like I said, I have been feeling increasingly worse in recent days. As always when I have a flare of my symptoms, I put up with it and I hope I’ll feel better soon (with the help of my prescription pain killers, hot water bottle, noise cancelling headphones and blankets). Luckily though, I had a GP appointment today (I see my GP roughly once a month so she can check up on me). I would never make a GP appointment simply for an increase in my ME symptoms, if I were to do that I’d be making multiple GP appointments every day (that’s how frequently my symptoms fluctuate). I told her I was feeling extra unwell and thought I had a temperature. Given I haven’t had a bug, infection, cold, flu or temperature etc since before I had ME she thought it was significant, so she looked at my throat and checked my temperature. And as you’ll have gathered by the title of this post, I have tonsillitis. I can’t tell you how relieved I am. I have an actual reason for why I feel so unwell at the moment. I will in all likelihood feel ‘better’ after a week of antibiotics. I’ll still have ME of course, but this infection is (hopefully) an anomaly, and not a sign of my ME worsening, time will tell.
It’s interesting though. I have possibly had tonsillitis for the last couple of weeks, certainly for the last week, and it didn’t occur to me to go to the doctor. Because despite feeling worse at the moment, it’s still completely normal for me to feel like this, it’s nothing new or out of the ordinary. I wonder if this can help non-sufferers understand what it feels like to have ME? Well, if you’ve had tonsillitis, apparently it feels like that, with the addition of other ME specific symptoms. Now imagine feeling like this every day, perhaps for the rest of your life…
I can’t help but wonder if it’s a good sign that I have my first infection since I’ve had ME. Not enough is known about ME in the medical community so my GP couldn’t really comment on this. But it seems significant to me. I may be clutching at straws here, but could it be, that my immune system is starting to work properly? ME comes in all shapes and sizes, with different symptoms and levels of severity. But it does seem that in ME patients, either we are extra susceptible to catching infections and viruses and catch everything that’s going around. Or, we never catch anything. I’m the latter. I’ve heard it said by some in the ME community that if you are in the ‘never gets bugs’ subset of ME patients, that the day you do catch something, it’s a good sign. Now this could be total nonsense, but it’s something positive to hold onto, for now at least.
*Cycles of fluctuating activity levels and symptoms, which are a common feature of ME. Boom and bust cycles can happen when a person with ME is overactive when they are feeling better, which may lead to an increase in symptoms and a decrease in function.
PS. I have started working on part two of From healthy to not healthy. I’m finding it very difficult to write and it’s taking longer than I anticipated. But I will post it, eventually.