Day 103 of life with lingering #covid19 symptoms, and here's a short thread to illustrate just how bonkers this illness is in terms of being completely unpredictable and random with no rhyme or reason #longcovid 1/n
So the weekend was pretty bad in terms of fatigue of body and brain, and general mood, spent a lot of the weekend in bed, and sleep/naps during day or night were non restorative. Rest doesn't provide any solace from symptoms 2/n
Fast forward to this morning, and despite only 2 hours of sleep, it feels restorative, and at 2.30am, my body is screaming with energy and wants to go for a 5 mile walk (I won't do that, but if I do walk later today, I'll probably limit about 10% of that) 3/n
Mentally I feel very different, not exactly normal, but with no brain fog/fatigue and it's so nice to be able to think relatively clearly. I'm not going to sit down and write my memoirs, but just enjoying the moment 4/n
I've heard people talk about "relapsing-remitting" in terms of how #longcovid can feel. It really is most bizarre this morning. In terms of how I feel, it's like, have the past 103 days just been a bad dream? 5/n
My mood has shifted from apathy over the weekend to "anything is possible" this morning 😃 Anyway, I have medical appointments this week, so I'm going to focus on "pacing" my activities so that I'm able to make the appointments 6/n
No matter how short lived this "remission" of symptoms is, I'm going to enjoy each moment in terms of feeling a bit like my normal self - Have fun, be kind to yourself and don't forget to create moments of joy every day for yourself and others 🙏🏽/end

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More from @ManeeshJuneja

May 21, 2021
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 away😃

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 £815 and with other tests and doctor fees, it was just over £1,400 in total 3/n
Read 8 tweets
Apr 14, 2021
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 “words” used to describe the symptoms don’t actually reflect the experience of the illness – Allow me to explain 1/n
Many are hearing reported symptoms like “fatigue” or “headache” or “brain fog” 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/94… 3/n
Read 10 tweets
Apr 12, 2021
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
Read 8 tweets
Nov 15, 2020
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
Read 14 tweets
Oct 17, 2020
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
Read 16 tweets
Sep 27, 2020
#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
Read 5 tweets

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