Today marks 9 months exactly (277 days) since my #covid19 symptoms first began, and the #LongCovid saga is not yet over for me.

It’s Day 12 of my relapse. No issues with fatigue today!

Brain still feels a bit of pressure in it though.

https://twitter.com/ManeeshJuneja/status/1348017945591607307?s=20 1/n https://twitter.com/ManeeshJuneja/status/1348017945591607307

Whilst most of this relapse so far has been spent confined to bed due to having no energy, that wasn’t the case today. I leapt out of bed and felt capable of going for a walk (I didn’t though, still need to minimise exertion and it was -2C outside too) 2/n

It is weird to reflect on the fact that my life has been turned upside down for the last 9 months due to the crazy, unpredictable rollercoaster ride of #LongCovid – although I’m grateful (in the bigger scheme of life) as it could have been worse 3/n

Whilst the first 3-4 months were truly horrendous in terms of how horrifying and debilitating the symptoms were, there have been many weeks where I’ve actually felt normal again, and free of all symptoms with no post exertional malaise 4/n

I had 21 days in summer 2020 which were amazing, and I had no symptoms, day after day – but then I relapsed at the end of that period

https://twitter.com/ManeeshJuneja/status/1288397469773111296?s=20 5/n

I then had 44 days in Nov/Dec 2020 which were even more amazing!

Again, no symptoms, day after day, until this most recent relapse kicked in

https://twitter.com/ManeeshJuneja/status/1335759408098406400?s=20 6/n

When I look back at my activities, I strongly suspect that my last 2 relapses were primarily triggered by the mental exertion of “too much thinking” rather than too much physical exertion. I still don’t feel I’m in a position to resume work, even after 9 months! 7/n

Nobody can tell me when I would make a full recovery from Long Covid.

It could be in 9 days, 9 weeks or another 9 months.

All I can do is plan for the worst and hope for the best and just deal with the need in front of me here and now 8/n

Mentally, it’s so easy to descend into a really dark place and adopt a victim mindset, dwelling on questions “Why did this have to happen to me?”

I have found expressing gratitude for everything I have, even on the worst days, to be immensely helpful in staying resilient 9/n

You realise very early on in an illness like Long Covid, that you are not in control. You can try to manage your symptoms, but largely the illness operates on its own schedule. That’s why recognising this & letting go of the need to be in control has been liberating 10/n

I have another appointment at a NHS Long Covid clinic in 10 days time (hoping this relapse will be over by then)

I think it’s to go through my 6 minute walk test result and to hopefully discuss how they can help me navigate the optimal path to recovery 11/n

I didn’t realise until I became a patient how valuable peer support could be in so many ways

@susannahfox wrote a great post on “Peer support for when the system fails” https://susannahfox.com/2019/01/07/peer-support-for-when-the-system-fails/ 12/n

Whilst my GP and the doctors I have consulted in the last 9 months have been truly brilliant, I’ve learnt that the healthcare system still fails some patients, not just other Long Covid patients, but patients who have a number of different conditions 13/n

We don’t have to tolerate a world in which patients sharing their health concerns are laughed at or dismissed by their doctors, or told that their symptoms are in their head and it’s just anxiety 14/n

How can we work together to ensure that patients are listened to with dignity, respect and compassion each and every time?

/end