Haven't tweeted for a few days, a bit of a rollercoaster ride again with #longcovid and symptoms, up and down but hopeful that I'm heading in the right direction. Day 122 since onset of symptoms.
Here's a thread on what's been happening #covid19 1/n
On Day 119 (Wednesday), my GP called to check in on how I'm doing. Sad to report that compared to the brilliant interactions I've had with her so far during #longcovid, this was not a great interaction. Made me feel like I was being a nuisance with my questions 2/n
I will explain more in another thread, but this one brief interaction with my GP left me feeling like I don't want to speak to my GP again for some time. It's really interesting how just one negative interaction can change your perception of a service 3/n
I woke up on Day 120 (Thursday) feeling incredibly sad, apathetic & tired. This sudden change in mood has happened before, many times during this illness. I didn't really feel like interacting with the world, and I did the bare minimum at home with some time just in bed 4/n
Day 121 (Friday), I was back to my normal upbeat self, getting out to the park at sunrise & had a great cycle ride. I am feeling interested in #digitalhealth work again, so have ordered the new Samsung Galaxy Watch 3 (it claims to estimate and monitor blood oxygen levels) 5/n
Friday continued to be a fun day, I drove 120 miles round trip to test drive the new #Polestar2#electriccar - A very enjoyable experience and the car itself is a very well designed high quality car that just happens to be electric 6/n
Using the Google Assistant to control the car's functions was fun until the car seemed to lose the internet connection at 70mph and hence my verbal request to change the temperature of the climate control was timing out, and required me to look away and use the touch screen 7/n
A few bugs, but overall, a very compelling proposition in terms of the first car powered by Android. From a health perspective, I can imagine in the next 20 years, our cars would be a virtual health coach, monitoring and analysing our vital signs/mood/wellbeing as we drive 8/n
I also had my 2nd Manual Lymphatic Drainage (MLD) massage on Friday too to try and help with my persistent lower body symptoms. Once again, it provided immediate relief, and that relief from the symptoms is still there the next day 9/n
I did ask the therapist why the MLD only provides temporary relief and why after 2 days my lower body issues return (i.e. not being able to squat, pain when walking up/down stairs), and she said that with more sessions, she hopes the effects last longer 10/n
I have one more MLD session on Monday, not sure how feasible it would be to have many more sessions though. Each session if £70 for 1 hour. She told me to see how long the relief lasts after Monday's session and we can take it from there 11/n
Went to bed late due to the heatwave here in London, but one noticeable impact of the MLD was the improvement in my sleep last night, both in terms of overall duration and REM/deep sleep. Sleep during #longcovid tends to be light and under 2.5 hours 12/n
So my recovery progresses, and I hope I have fewer bad days like the one this week where I felt sad, apathetic and tired. I have some work with clients next week, but keeping it to a few hours a day maximum, to ease myself back into the world of work 13/n
I've also been booked by a client for a virtual keynote speech next month. My insights as a #longcovid patient and what that means for #digitalhealth & healthcare in general should make for some impactful storytelling. I'm glad I'm able to contribute again after being unwell 14/n
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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 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
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
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