Unexpected GOOD news ☀️ about health, post-degree studies:
Not sure what has gone ‘right’, but these last 6 days I haven’t noticed many ME/CFS symptoms at all. This comes right after 2-3 weeks of the worst symptoms for literally years, and a long-term decline over the duration of my degree studies (4 years). So this is totally and utterly unexpected.
For the last 6 days, I’ve been planning carefully as usual, pacing (with approx 1 million back up plans 😜), but yesterday was a recent record: did 3 social events, one after another! What the flip?! Normally I’d do one small social event every 3-7 days, but even been avoiding them completely lately due to the massive and lasting impact. There was lots of familiarity with the people, places and events yesterday though, so not tonnes of novelty and all very easy going physically, and all the plans went like clockwork. Also there wasn’t a pressure to ‘perform’, socially, which is key. But, still! Massive, massive difference. I have a big ‘social hangover’ now (autistic side of me never knows what social mistakes I make, terrifying) which prevented me from sleeping properly, but I don’t feel dysregulated (physically) from that like I would be normally, just a bit of ‘normal’ tiredness.
My hypotheses:
I usually get sick (ME/CFS) for 2 weeks after the end of every term. This time it was closer to 3 weeks and the worst sickness for a long time. Maybe that extra time resting helped rest more deeply. I cancelled lots of even low-key activities during that time, but perhaps this was key.
I had a 6-month gap in my degree studies last year but I did NOT experience this improvement then. So I’m thinking maybe I’ve been released from all that subtle residual stress now my degree is done, and I’m actually feeling good instead of constantly anxious I’ve forgotten some studies. The hormones involved in feeling good may actually be doing more than just making good feelings (hormones always have loads of different roles in our bodies, and rarely, if ever just one!)
This one is a long shot: I got a mild respiratory virus last week and only have a runny nose left of it as it’s already gone except for that. I’ve been feeling better since the virus hit and started to lift … it makes so no sense. But ME/CFS has lots of impacts on the immune system (it’s thought to be a post-viral syndrome after all), maybe this virus distracted my immune system, or kicked other systems into gear that are usually offline. Who knows. The timing is odd, though.
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Whatever is behind this, I just hope it continues. I’m balancing ‘carpe diem’ to make the most of this precious healthy time with my experience over the last 14-15 years of ME/CFS, that it’s best to keep back up plans to hand at all times. These days feel like a massive gift. 💝
[Edit to add: please don’t advise me that my good health period with ME/CFS may end. I am well aware. Maybe just celebrate someone’s good news? Thank you! 🙏 ]
@AnAutieAtUni@actuallyautistic@mecfs that's wonderful news! And for sure an absence of stress can make a huge difference. While I'm still pretty sick, I am so much better since I stopped working and exited that toxic environment.
You don't need me to tell you that this grace period may end, but I really hope it's a sign of the path to recovery!
@Rhube@AnAutieAtUni@actuallyautistic@mecfs I'm having a similar thing lately. Until very recently, I was only able to get out of bed for very short spans. Once I got into a living situation that was more stable and less stressful, my ability to walk around has been greatly increased. I'm still only able to do one thing a day, but I am able to do one thing a day now, which is amazing!
@Cetraria@Rhube@actuallyautistic@mecfs That’s so wonderful! And I totally hear you. Lifestyle - like living situation pressures - play such a big part in all this.