Day 165 of #longcovid and it's another day of feeling a tiny bit better than the previous day. Still feel quite a long way from "normal" in terms of what I feel I'm able to do but grateful for not feeling worse than yesterday ππ½1/n
My natural wake up time is between 4-5am, so despite crappy sleep (according to my data), I actually feel ok-ish, still takes me several hours before I fall asleep at night 2/n
Good to see I was able to keep my HR below 104bpm yesterday (an experiment to see if that approach avoids future relapses) 3/n
I limited my activities at home to cooking, cleaning, light housework, plus I had a 5 min walk outdoors yesterday. Still, more active than I expected (when I glance at my data) 4/n
So this has all been the data from my Withings Scanwatch (left arm) and it's interesting to compare against the data from my Apple watch (right arm) - I don't know if floors climbed is defined the same as flights climbed but the numbers are close-ish 5/n
I am still living with persistent lower body symptoms, and I am starting to wonder if it's a semi-permanent symptom. I can walk ok, but I cannot lift myself up from a squat and getting on/off toilet, chair etc requires effort as it's not easy 6/n
It's fascinating to see the body and brain improve at different rates. I have more energy in my brain today (in terms of feeling bored and restless) but my body doesn't have the corresponding energy to act upon that restless mental energy 7/n
There is a free webinar from the Royal Society of Medicine on Thursday this week, "Long COVID: Understanding the shadow of the virus" rsm.ac.uk/events/rsm-stu⦠8/n
It's just over an hour till sunrise. I'm going to see if I can do another 5 minute walk then. Rather than constantly compare myself to what I could do before I got sick (which would not be good for mental health), I just compare myself to the day before, and keep life simple /end
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Day 406 of living with #LongCovid and 7 days since 2nd dose of Pfizer covid vaccine
Have had about 3 weeks of mostly feeling normal, with virtually all of the symptoms that used to interfere with cognitive and physical functioning staying awayπ
A short thread 1/n
Since the tinnitus that appeared after the 1st dose of the pfizer covid vaccine was only in one ear, I had seen an ENT specialist & got a CPA (cerebellopontine angle) MRI of my brain, just to rule out any serious cause of the tinnitus - thankfully, nothing sinister was found 2/n
I had chosen to see an ENT specialist privately and pay out of pocket (rather than the NHS) for quicker care and testing when the dizziness and tinnitus started. The MRI was Β£815 and with other tests and doctor fees, it was just over Β£1,400 in total 3/n
I think part of the reason why so many people (including some clinicians) think #LongCovid is either being exaggerated or not a real illness, is because the βwordsβ used to describe the symptoms donβt actually reflect the experience of the illness β Allow me to explain 1/n
Many are hearing reported symptoms like βfatigueβ or βheadacheβ or βbrain fogβ and thinking, well everyone feels a bit tired during lockdown or everyone gets headaches/has problems concentrating from time to time, so how can this be an illness? 2/n
I mean the pandemic has been tough for everyone, right? So maybe the "reported generic sounding symptoms" of Long Covid are merely pandemic related distress that everyone is suffering from? I can see why some might think that medscape.com/viewarticle/94β¦ 3/n
Day 367 of living with #LongCovid & 44 days since 1st dose of covid vaccine
Despite <3 hours sleep, energy was high today (but still not as high as how I felt just before the 1st dose)
Fasted for 15.5 hours overnight - was very manageable 1/n
Had my pure tone audiogram & tympanometry this morning. Now waiting for ENT to review. No dizziness today but ENT said it would come and go. Tinnitus persists though, although it doesn't stress me out 2/n
I also decided to pay for private blood tests today. I want to get an idea of my levels now that I've started intermittent fasting, and will repeat the blood tests in 3 months time to see what difference the regime makes to my body 3/n
Day 221 of #LongCovid and I haven't been able to post updates on here for a few days as my relapse was really debilitating
Here's a thread on relapses, resilience, and dreams #covid19 1/n
On Thursday, I was incapacitated the entire day, body and brain in total and complete shutdown. Was unable to leave the bed. Brain was unable to do anything. This has happened before 2/n
The symptoms kick in around 30 mins after waking up and start to ease after 10pm at night, but essentially during the day, they are there and are constant 3/n
I really find some of the reactions from strangers, aquaintances and even good friends to be quite incredible, when I tell them that I've had #LongCovid for over 6 months - here's a thread with what people have said to me #covid19 1/n
None of these people who commented on my Long Covid experience have any medical or scientific training 2/n
Are you sure you don't have any underlying health conditions? (I don't but they seem to think that only people with underlying health conditions are at risk) 3/n
#LongCovid can impair your ability to conduct the seemingly simplest of tasks such as "thinking" about what to make for lunch/dinner etc. - Let me explain on this short thread 1/n
My various types of brain-aches this week were so bad, that when hungry and faced with "thinking" about what to eat at home, just "thinking" about what type of bread to use with a sandwich or ingredients for a salad, my brain would say "STOP thinking, you're hurting me!" 2/n
So to minimise the exertion of "thinking" at meal-times, I would either just order something from a restaurant using a food delivery app, reach for something quick and easy, like a ready made quiche or ask a family member to make something for me 3/n