So it's Day 100 of my lingering #covid19 symptoms, and this is a thread to explain just how brutal the "relapse" of symptoms was this week, in the hope that it helps those who've never gone through this to get an insight into how terrifying this journey can be #longcovid 1/n
When I talk about relapses in the context of my journey, it's when a wave of extreme fatigue (body and brain) kicks in, and for a day or a few days, I've had no energy and just been in bed, sleeping a lot. However, this week was a whole new level 2/n
I had 10 good days since the last relapse, my activity (mental and physical) had been slowly increasing, and I was even able to jog for a few minutes the day before the relapse. I was building up my exercise super slowly even though I felt I could do more 3/n
So the next day (Day 98) I had felt good enough to do a short stroll at sunrise. A few hours later, the relapse began, when a wave of extreme fatigue (body and brain) hit me and I crawled into bed and closed my eyes - I didn't envisage what would come next 4/n
The worst part of this relapse was at lunchtime. I had lost my appetite but family members wanted me to eat something to ensure my body had fuel. It was really challenging to even get out of bed, but really slowly, I managed to hobble downstairs to the kitchen 5/n
It wasn't just hobbling, but literally, every movement of my body took a long time, the "thinking" involved in putting one leg before the other seemed to be seriously delayed. It really got bad in the kitchen though 6/n
I wanted to open the door to the fridge but I couldn't seem to "think" how to actually do it. What the hell has happened to my brain? I asked for help from family to open the door and the best I could do was point to food items I wanted to eat, it was hard to say their name 7/n
I had sat down on a chair to eat my lunch, but afterwards, I was unable to lift myself up from the chair. It's like everything in my lower body had been switched off, way beyond the simple fatigue of prior relapses. A family member helped, but I couldn't even stand up 8/n
All I was able to do was to fall out of the chair with help and to crawl on the floor (really slowly) on my hands and knees all the way through the kitchen, up the stairs and into the bathroom. Things have never been this bad since symptoms began 9/n
This week has seen moments where I've reached new heights in terms of activity as well as new lows in terms of debilitating relapse. The relapse feels like a bad dream. I was surprised to find my relapse easing after about 12 hours, normally they would last 24 hours at least 10/n
The next day after this brutal relapse, I was back to my normal "unwell" #longcovid self. Sure, my persistent issue of not being able to lift myself off the toilet using legs alone was still there, but I was able to stand up, walk, and I was able to "think" much more quickly 11/n
Bizarrely enough, the morning after this brutal relapse, I felt strong enough to walk several miles (but didn't) and whilst my normal "unwell" self is nowhere near my "normal" pre covid-19 self, it still allows me to do a lot 12/n
I have no idea what exactly triggered this brutal relapse. Was it the 4 minutes of jogging the day before? Was it the mental exertion required to document my journey in long Twitter threads earlier in the week? Or was it something else? Nobody knows 13/n
It's the neurological aspects of this relapse that really concern me. My career as a knowledge worker revolves around my ability to think and to think quickly. I'm hoping that this virus, whether I'm relapsing or on a normal "unwell" day is not damaging my brain in any way 14/n
The memory of this and prior relapses lingers. Will the mental exertion of concentrating on watching an entire movie on Netflix trigger a relapse? How long should I walk today to avoid triggering a future relapse? Or will these relapses happen even if I just rest? 15/n
What a rollercoaster ride of an illness. It's 2 days since the relapse, I've slept for a few hours (par for the course these 100 days) but I've woken up with a surplus of energy. My body wants to go for a run and to lift weights! I'm going to do neither, it's just weird 16/n
Let's see what my brain and legs MRIs show this week with respect to my neurological symptoms these past 100 days (what I've described in the relapse is just some of the neurological symptoms I've had)
Do whatever you can to avoid getting this virus! /end
Do whatever you can to avoid getting this virus! /end
I must add some context, that in my 100 days, I have been careful, I have been pacing within my available daily energy levels, and the 4 minutes of jogging was purely for the 24 hour ECG test. I've actually made remarkable progress overall in the last month in MY own journey.
The neurological issues and the fatigue have been part of my daily life since symptoms began 100 days ago, even when I've been "resting" in bed for days on end with no "exercise" triggers
