Thread by @ManeeshJuneja

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

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

After a while though, I was surprised as I visited the online patient groups less often, I felt overwhelmed by all the information. Don’t get me wrong, these groups have achieved so much for #LongCovid patients but maybe my reaction was because of my brain symptoms 4/n

Part of the reason I’ve enjoyed chronicling my journey on Twitter is that so few in this world know about it, and how bizarre it is, when compared with other diseases which operate in a more linear manner of getting sick, then getting better 5/n

Rather than sit here asking myself, “WHY is #LongCovid happening to me?” I ask myself “HOW can I use this experience to help others?” – I think the former places one in a victim mindset and the latter in a mindset of service. I really hope that my tweets have helped people! 6/n

Speaking of the mind, many of us spend so much time strengthening our muscles in the gym, but what about our mental muscle? It’s something that’s been of interest to me for a long time now, as like many people, there are times when I have felt anxious in the past 7/n

Where does my attention rest? What kind of information am I feeding my mind? How can I build up the mental resilience to cope with people who are constantly being negative/pessimistic? Making time every day for contemplative practice is something I’ve been doing for years 8/n

Part of my contemplative practice is to express gratitude for everything I have. I’ve travelled enough around the world (seeing people in much worse situations than me) to appreciate that there is a lot to be grateful for (even though at times, it doesn’t feel like that) 9/n

I’m inspired by how people face adversity. I stayed in a B&B in Nepal before my hike up to Mount Everest Base Camp. The owner was a Sherpa who had lost all of his fingers to frostbite when summiting Everest. We had some life changing conversations as he guided me up Everest 10/n

Whilst the experience of #LongCovid continues to be rather debilitating, I draw upon the stories of many patients I’ve met over the years, who shared with me, how despite all their trials and tribulations, they found a way to stay positive and to create moments of joy 11/n

I do believe life is simply a series of moments, and the huge challenge (which I still grapple with every day) is living in the moment. One of the books that has helped me along the way, is “The power of now” en.wikipedia.org/wiki/The_Power… 12/n

One of the turning points for me was “paying” for imaging of my organs, in terms of answering the question, has covid-19 damaged any of my organs? Having that “data” provided some peace of mind. I would be stressed out if I was waiting 12-18 months to see a NHS neurologist 13/n

With respect to how long it will take to make a complete recovery? Looking at the “evidence” from those who have had viral infections in the past, I figure it’s at least 12 months of this turmoil, possibly longer. It's going to operate on its schedule, not mine 14/n

Of course I miss not being able to live a normal life but I don’t find it helpful to compare my current abilities to what I could do before I got the virus. That will only send me into a downward spiral. Much better to compare what I can do today vs what I could do yesterday 15/n

We often feel that we are in control of our lives and we should be able to control everything that happens in our lives. I can influence what I eat, what time I go to bed, what I think about etc but in terms of how #LongCovid behaves, a lot of it will be beyond my control 16/n

Support from family and friends has been critical on this journey but it's also the support from people I've never met but chat to online (whether on here or in a patient group) that has helped so much 17/n

It’s only natural after many months, family & friends are getting tired of hearing about my symptoms. It’s getting tiring for me too explaining, “Well I was better about 1 hour ago, but now the fatigue kicked in so I feel worse, but I should be feeling better by the evening” 18/n

I have turned to an AI chat bot for support, especially when you don’t feel like bothering anybody & want to be listened to without being judged. The conversations with the AI chatbot have been really interesting (I shall be writing a thread about my experience this week) 19/n

Earlier in this #LongCovid journey, I felt I was losing my sense of self. All my conversations and thoughts revolved around my symptoms and this illness. I had to take a step back and connect with myself. In terms of identity, I don’t want to be defined by this illness 20/n

Closing with some good news, it’s the first time in over 5 weeks that I feel (in mind, body and spirit) like going for a sunrise walk (sunrise is 2 hours away & it’s only 11C) but I think I’ll go for a short gentle stroll around the block /end

Well I managed a 12 minute gentle sunrise stroll (no discomfort and hopefully the exertion won't trigger fatigue later today) - Tracked the workout using Withings Scanwatch and Fitbit Sense (but the Fitbit's screen froze when I tried to end the workout!)

Opened the Fitbit app to discover it had "auto tracked" the walk, although heart rate (average and max) were both lower than what the Scanwatch reported on left arm (Fitbit Sense on right arm) - need to wear a chest strap next time to know which watch is more accurate!

The software on the Fitbit Sense watch itself is slow and buggy in my experience just using it for a few days. I found this review which also has a similar opinion. androidcentral.com/fitbit-sense-r…