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
I don't believe you had the virus because you never tested positive and you never tested positive for antibodies! 4/n
Trump recovered quickly so I don't believe that Long Covid is real 5/n
Your body is just reacting to the fact that you used to travel a lot for work, and you stressed your body out, it's not the virus 6/n
I don't know anyone in my network who got the virus so I am struggling to believe that your Long Covid experience is real 7/n
You've clearly got a faulty immune system, that's why you're unwell for so long 8/n
I reckon you should just do some vigorous exercise and you'll be fine in a week. Your real issue is you've been resting in bed too much 9/n
I reckon you've got a selenium deficiency. Eat 6 brazil nuts every day for a week and you'll be back to normal 10/n
I think you're making Long Covid up. The virus isn't as bad as they make out and it's just a government ploy to exert more control over our lives 11/n
You must have defective genes 12/n
I think you're just being lazy and your symptoms are because you have a weak mind. There is nothing physically wrong with you 13/n
When people responded this way, I used to share articles about Long Covid or point out that there are online patient groups with tens of thousands of people around the world, all going through the same journey, and still they didn't believe that Long Covid was real 14/n
If you also have been living with Long Covid, and told people about your experience, what's the craziest response you've ever had? /end
I forgot to add, that the person who has been most sympathetic and supportive during my Long Covid journey has been my GP.

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More from @ManeeshJuneja

27 Sep
#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
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
25 Sep
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 ImageImageImage
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 Image
Oh, according to Fitbit's website, the ECG app will become available in the UK and a bunch of other countries from next month, October 2020
fitbit.com/global/us/tech… 3/n ImageImage
Read 13 tweets
24 Sep
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 Image
Now I realise why I saw QR codes displayed at entrances to cafes etc over the summer 2/n Image
"We use automated-decision making to help determine which other users need to be anonymously alerted" - I wonder how accurate these automated decisions will be? 3/n Image
Read 10 tweets
22 Sep
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
Over a period of 7 hours, I lay down and closed my eyes, then walked around the house feeling like a zombie, then had a short nap, and eventually the brain-ache seemed to subside enough for me to participate in a scheduled webinar this afternoon 3/n
Read 13 tweets
20 Sep
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 Image
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 ImageImage
Read 9 tweets

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