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#DigitalHealth Futurist. Day 161 lingering #covid19 symptoms. Health Data, Human Focus, Global Perspective. Tweets my own. #longcovid
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30 Aug
It's now 144 days that I've had lingering symptoms of #covid19 - here's an update on my symptoms. I've also found some useful resources for the #longcovid community [thread] 1/n
It's now over 2 weeks since my current relapse began, and the fatigue continues to impact my ability to do "basic tasks." Even the physical task of hoovering at home has been beyond my ability this weekend. I finally have some mental energy to write this thread 2/n
I read in an online patient group today how another #longcovid patient had reported their relapse of symptoms lasting 7 weeks. It serves as a reminder this is not a straightforward illness where one gets sick and then recovers in a linear manner 3/n
Read 13 tweets
24 Jul
Day 107 of life with post #covid19 symptoms and here's a thread with details about what took place when I visited my neurologist and cardiologist yesterday and in particular their advice for managing my ongoing recovery #longcovid 1/n
Another night of short sleep, but I don't feel that bad, no brain fog etc this morning and despite my ongoing issues with lower body, I was ok to walk and grab a coffee from a local store this morning 2/n
To set the scene, I specifically chose private specialists who were relatively experienced, also do their own research, had experience with seeing people with post viral symptoms and felt comfortable taking on my case 3/n
Read 26 tweets
20 Jul
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
Read 7 tweets
17 Jul
So it's Day 100 of my lingering #covid19 symptoms, and this is a thread to explain just how brutal the "relapse" of symptoms was this week, in the hope that it helps those who've never gone through this to get an insight into how terrifying this journey can be #longcovid 1/n
When I talk about relapses in the context of my journey, it's when a wave of extreme fatigue (body and brain) kicks in, and for a day or a few days, I've had no energy and just been in bed, sleeping a lot. However, this week was a whole new level 2/n
I had 10 good days since the last relapse, my activity (mental and physical) had been slowly increasing, and I was even able to jog for a few minutes the day before the relapse. I was building up my exercise super slowly even though I felt I could do more 3/n
Read 19 tweets
24 Jun
We hear stories about how the NHS is bad with digital technology, but here's a story of how the NHS can be quite remarkable, from a patient's perspective in terms of accessing data that previously would not be available directly to patients #digitalhealth 1/n
So as part of my lingering #covid19 journey, my GP ordered blood tests yesterday to look for signs of muscle damage. The blood test was done around 2pm at the hospital yesterday 2/n
My GP had told me the results would take a few days to arrive, so a call to discuss the results was scheduled for next Monday evening to give them enough time to arrive 3/n
Read 10 tweets
4 May
Day 26 of #selfisolation due to suspected #covid19 coming to an end – the symptoms linger on and I’ll share some resources that may help you if you’re in a similar situation 1/n
In case you weren’t aware, I’ve been diagnosed over the phone by my GP, but have not been tested yet here in the UK 2/n
I tried testing my abilities yesterday. Walked up and down the stairs at home, quicker than normal, 3 times. My legs were burning in pain, my heart rate was noticeably elevated and I started to feel very dizzy, so just sat down 3/n
Read 13 tweets
17 Mar 19
Thanks to @turo I'm renting a #TeslaModel3 during my visit to Silicon Valley - certainly a different experience than traditional #carrental agencies #future #zeroemission #electriccars
Gone to Tesla's HQ in Fremont, California to try the supercharging there. It's supposed to be much faster than before.
I had hoped the Model 3 would charge at the new rate but it didn't happen
Read 51 tweets
27 Feb 19
Online access to my GP records - what an exciting concept. Let's see how it works. #NHS #digitalhealth
So according to the NHS info, all I have to do is pop down to my GP surgery and get them to generate a username and password for me. I did that, and it was a quick process to get the info. nhs.uk/using-the-nhs/…
So this is the menu after I logged in. Some options are unavailable for some reason (greyed out) - looks like I can't view my full patient record
Read 82 tweets
11 Feb 19
Now reading the the #TopolReview report - Preparing the healthcare workforce to deliver the digital future. It's an illuminating read topol.hee.nhs.uk #DigitalHealth
It's clear that a lot of effort has gone into the #TopolReview - it paints a glorious vision of what healthcare would look like over the next 20 years (for both staff and patients) - enabled by technology such as #genomics, #AI and #robotics
For me the #Topolreview has too narrow a focus. It's been commissioned by healthcare, yet we know that with an aging population, many people with long term conditions have to rely upon #socialcare as well. We need joined up thinking, imho.
Read 34 tweets
6 Feb 19
It appears that the makers of Replika #AI have been making changes so that the chatbot can spot when a user is talking about #selfharm or #suicide - it's not 100% successful in this test but much better than in my earlier testing
Apparently, this #AI friend thinks that my consumption of 2,000 bottles of beer today is healthy 🍺
Taking sleep medicine with alcohol?
Read 16 tweets