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
The dizziness that started after the 1st dose of the pfizer covid vaccine has completely gone now for several weeks now, so that's a huge relief 4/n
I had my 2nd dose of the pfizer covid vaccine 7 days ago, and fortunately, there hasn't been the horrible resurgence of Long Covid symptoms that the 1st dose prompted for weeks on end, but the 2nd dose suddenly made my tinnitus louder, which is annoying 5/n
An acceptance based approach has helped me to live with the tinnitus and not get stressed about it - it's there all the time, but I just get on with my regular activities 6/n
The best part of the past few weeks is the complete absence of post exertional malaise, so I can go about my daily activities including walking without any issues 7/n
I'm still being cautious and avoiding vigorous exercise until I know my Long Covid is completely gone. It's great that all my debiliating symptoms remain absent, and fingers crossed, they never come back! 🙏🏽

/end

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More from @ManeeshJuneja

14 Apr
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
12 Apr
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
15 Nov 20
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
17 Oct 20
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
27 Sep 20
#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
27 Sep 20
Day 172 of #longcovid and after many days of awful brain-ache and fatigue, this morning feels very different (in terms of mental clarity and complete absence of fatigue) – so here’s a thread about resilience during my near 6 month journey so far 1/n
I’m an optimist by nature with a positive outlook on life by default, but this unpredictable rollercoaster of an illness has been very challenging, especially given it’s a new virus and everyone is unsure of how to deal with it, even the doctors that I have consulted 2/n
I felt so alone at symptom onset, I thought I was the only patient living with these odd symptoms, until I found a few Twitter friends also on their #LongCovid journey & then I discovered online patient groups, which proved so useful early on, to find others to relate to 3/n
Read 24 tweets

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