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 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

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

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

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

#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

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

https://twitter.com/ManeeshJuneja/status/1309766345068875777

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

Just got my latest super advanced health wearable, the #FitbitSENSE - it's unique in having an Electro Dermal Activity (EDA) sensor - I noticed the packaging mentions "stress management", "stress less" and "stress tracking" and "heart health" and an ECG app #DigitalHealth 1/n Oh ECG capability on another smartwatch. Oh wait, I just read the small print on the side of the box. Let me see if it's going to be available in the UK 2/n

Looks like the #NHS #TestAndTrace #contactTracing app is finally here. Why did it take them so long?

It's of less utility to me right now given my #longcovid has me effectively housebound due to symptoms, but interesting to see the process of setting it up 1/n Now I realise why I saw QR codes displayed at entrances to cafes etc over the summer 2/n

Day 167 of #longcovid - I seem to have had an array of brain-aches since symptoms began. Sometimes, it's a feeling of pressure on the brain, other times it's like a stabbing pain, and this morning it was just a regular pounding headache from the moment I woke up 1/n There is nothing that works for these brain-aches, and my neurologist advised against taking pain killers as they can make these particular post viral brain-aches worse. I couldn't do anything this morning due to how uncomfortable my brain felt 2/n

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 🙏🏽1/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

Day 162 of #longcovid has had more twist and turns than a spy thriller. I will illustrate on this thread why it's important for you to avoid catching #covid19 1/n Sleep has been seriously disturbed the past few nights, after the "exertion" of some work on Day 160. Today, I woke up at 3am, and felt so hungry, I had to eat quite a bit. This has happened before, in terms of changes to appetite 2/n

Day 161 of #longcovid and after last night's "exertion", happy to report I feel tired rather than fatigued, i.e. no post exertional malaise (PEM) that has appeared the day after exertion - but I've found that PEM can kick in even 3 days after exertion

https://twitter.com/ManeeshJuneja/status/1305974872414343170?s=20

1/n Given I was speaking constantly last night, and I have not had to do that for 6 months, my throat is a little bit sore this morning. I am sipping hot water made with honey and lemon today 2/n

Evening on Day 160 of #longcovid and this week has been a turning point. Yes, I've had my debilitating moments but I've actually managed to do some work (my choice) for the first time in many months! 1/n Yesterday evening, I participated in a webinar for a client. I managed ok, I was half expecting neurological symptoms to worsen and maybe to get confused and say the wrong words, but that didn't happen 😃 2/n

When I first got my Samsung Galaxy Fold last year, I didn't realise how much I would enjoy using a folding phone every day. I've just upgraded to the newest version, the #ZFold2 (in Mystic Bronze colour) which addresses the flaws on the original version #tech It is Samsung's top phone (i.e. expensive, with a delicate screen and requires handling with lots of care), so won't suit everyone, but at least they throw in 24 hour dedicated hotline should I need help at any time with the phone

What a crazy evening on Day 159 of #longcovid - my persistent lower body symptoms for months have suddenly exacerbated to the point where tonight I struggled to lift myself off the toilet using my legs even if I also pushed on the radiator & sink with my arms for support It's almost like everything in my lower body has switched off even more than usual tonight. I can walk around without issue, it's just that particular lower body movement that is really worse tonight, all of a sudden.

Many of us are distracted by phones, tech, too many notifications etc, so what's the solution?

Is it really more tech? Such as these new smart glasses that use #computervision?

indiegogo.com/projects/the-f… #Mindfulness #DigitalHealth At least they are able to offer a higher standard of privacy

Day 158 of #longcovid and the rollercoaster ride continues (although I'm not dispirited, merely learning to live within the temporary limitations on what I can or can't do every day) - here's a short thread 1/n I do feel I am slowly emerging out of my current relapse (over 4 weeks now) but it's really slow progress. I've kinda gotten used to being in this "halfway house" state of not feeling normal but not feeling completely debilitated 2/n

Day 157 of #longcovid begins with me screaming in agony. Woke up at midnight with pain in my right shoulder, it feels like being stabbed with a fork & then the fork is twisted around. I wasn't even lying on my right shoulder. The pain seemed to go away after 30 minutes but... 1/n I thought I could try and get back to sleep, but 10 minutes later, the pain resumed. It's still there 2 hours later, but thankfully finally seems to be subsiding. The pain seems to come and go during day or night of its own accord, just like my other symptoms 2/n

Day 156 of #longcovid begins with an early start (woke up at 2am) - here's a thread on why I feel multidisciplinary post covid clinics are needed to help patients on the long and unpredictable road to making a full recovery 1/n Yesterday's horrible sensation of pressure in my head eventually disappeared, only for a new pain to arrive, it felt like somebody was stabbing my right forearm with a fork all through the evening

https://twitter.com/ManeeshJuneja/status/1304021332900941824?s=20

2/n

Day 155 of #longcovid, and still emerging from this current relapse, but rather than feeling debilitated due to fatigue or relatively normal, I seem to be stuck in a "halfway house", especially in my head where my brain can sort of function but it "feels" tight. Very strange. What I've found when emerging from relapses during these 5 months is that as your energy levels rise, you are tempted to do more "stuff" whether it's leisure or work, because you have the energy to feel "bored" but a little too much exertion can make you feel much worse