I’ve got an ‘illness’ of some description, not sure what it is because the only symptom I have which is different from my normal symptoms (although they’re all now worse) is a headache. I usually feel sick, dizzy, tired, achey and worn out most of the time anyway, so it makes spotting ‘normal’ illness a bit tricky. Taking steroids every day weakens my immune system, so I’m already more prone to catching things when they go round, but, as I’ve written before, it takes me a long time to get over ‘normal’ illness than ‘normal’ people do. This is because the body would usually make a lot of cortisol to counteract the illness, which mine doesn’t. I can double my steroid dose but it kind of just puts my body into a weird standby mode rather than helping me fight it.

I guess it’s a bit like a computer. They have a bit of a strop by crashing or trying to open and close windows when they shouldn’t be and going into overdrive so the fan comes on to try and keep up with what you’re trying to do with it. And you’re sitting there looking at it thinking ‘Jesus, I only asked you to open up Firefox and google something, hardly calls for a meltdown like this’. That’s exactly what happened this week. Earlier last week I was operating really slowly, then on Friday morning I woke up and cried for an hour and had a big meltdown. For no reason at all. Then I slept all Friday and had another meltdown on Friday night. Then I crashed, so I double dosed.

While you’re looking at the computer thinking about how stupid it’s being, the antivirus scanner pops up and you think ‘oh right, that’s why, there’s stuff going on in the background’. Now, you can choose to pause it, but you know it’ll have to do it at some point, or you can wait it out, walk away and let it go into standby to do its thing. I can’t pause my illness, so I have to wait it out and go into standby. 

Sleeping in standby is weird. It’s not a restful sleep, I feel terrible and disorientated when I wake up. It’s different from needing a nap- it feels like I’ll die if I don’t sleep. It’s also one where I need people to wake me up every few hours to make sure I’m still alive (not joking), because if I need to take more medications, I might not actually be able to realise to wake myself up and do it, and could just deteriorate in my sleep. 

So in standby, my body is still running the antivirus. It’s not using as much energy, but it’s still using energy. It isn’t recovering or charging because I’m not giving it anymore power than before, because I’m not giving myself additional steroids while I sleep (hence the waking me up every now and then to check). When you’re sick, your body continues to make cortisol while you sleep, mine doesn’t. If I plugged myself into the mains and had a constant stream of cortisol, I’d maybe wake up feeling ‘topped up’ to the point of function I had before, in the same way a laptop does once it’s been charged. But I don’t have that option, so I go into standby and hope that I don’t run out of battery while my body does the antivirus checks. This is why we’re told to double dose, but it’s not an exact science.

So the last week or so I’ve slept between 15-18 hours out of 24 each day. The rest of the time I’ve mostly been lying down because sitting up is a bit like trying to play music in the background as well as running an antivirus. It’s a pretty miserable existence. And after tecovering from illness, i have the joys of tapering to my normal dose to contend with! Normal service should resume in about 3 weeks…*touch wood*


5 thoughts on “Standby 

  1. Katarina Zulak says:

    I hope you recover from your virus soon! Last winter I got a cold and it caused a fatigue relapse like I have never experienced. I have fibro and chronic fatigue. I can relate to the standby feeling of waiting for it to pass while doing nothing. I was able to listen to audiobooks and podcasts or do short sessions of calligraphy now and then, which kept me semi-sane. I’m grateful for those distractions, although I understand even those may be too much for severe fatigue. Sending spoons!

    Liked by 1 person

  2. mo says:

    I like the way you compare this illness to the computer. Makes so much sense. I hate it when I am so tired and can’t even get up the strength to reach my bottlr of HC that is on the nightstand 12 inches away!.

    Hope you bounce back soon


    Liked by 1 person

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