Life After Steroids / “Aren’t you better yet?”


relapse lazy


I have just ended a course of three days of extremely high dose steroids. The first 24 hours had me feeling both drunk and hungover in equal measure. The room was spinning, my heart was pounding, my head was throbbing, and not a drop of wine had passed my lips to justify this feeling. The next phase was a couple of days of feeling actually pretty fantastic. Better than I have in months. Full of energy ( still talking ninety to the dozen well into the late evening), ravenous, wide awake and – mercifully – pain-free.

Then the short term high dose treatment ended and I am now in the “been run over by a bus” phase of relapse recovery. My muscles ache, my mouth is dry and has a nasty metallic taste, and my head is fuzzy. I seem to remember that this is entirely normal (although my last relapse was treated with IV steroids, not oral tablets, so I guess there will be subtle differences). But that doesn’t mean I was ready for it.

When I swallowed the last tablet, there was a significant part of me that was saying, “That’s that then, all done. Treatment over, you have got through this”. It has taken a bit of research and some tough talking to myself to make sure that I remember that these few days are the starting blocks of recovery; the journey is just beginning.

I won’t wake up the next day feeling “back to normal”. It is not like a course of antibiotics for an infection, or a paracetamol for a headache. Diagnose, treat, recover, get up and carry on. A relapse recovery can take weeks, sometimes months.

The steroids have knocked my immune system out of kilter (by necessity, as that is what was eating away at my brain and spinal chord) but that could leave me feeling weak, fatigued and prone to infection for some time. The damage going on inside my central nervous system will hopefully have been reduced and slowed, but not prevented or reversed. The next few weeks will need me to rest and balance my energy carefully, listening to my body and going a bit easy on myself at times.

All easier said than done.

The mindset in out culture is that we get ill, we dose up, we get fixed, we continue as before. I suspect that the biggest battle I face over the next few days and weeks will be getting past those assumptions, both my own and those of other people. The physical stuff is hard, but the psychological is even harder sometimes.


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