Meri 4x💉“Exiled for Good of the Realm” Williams Profile picture
CTO @Pleo. NED @FlagstoneGroup. Chair @TheLeadDev 🎤 Advisor @Kindred_VC, @SkillerWhale1. Wife to @ellywilliams. #ND #EhlersDanlos 🏳️‍🌈

Jul 13, 2020, 6 tweets

I’m struggling with the exhaustion of this #LongHaulers #COVID19 experience.

I was first sick in January (after a trip to Barcelona) with fever, pain, cough, shortness of breath so bad I had to use my CPAP all day.

Couldn’t get tested at the time bcs of UK restrictions

Then in March I had what felt like a relapse — fever & feeling like I’d been hit by a damn truck. I slept like 16 hours a day for 10+ days. Then thought I recovered!

Until 6/7 weeks ago when fatigue & fever came back with added ear infections after super bad jaw dislocation

I’ve also not been able to get my regular disability treatments for my #EhlersDanlos, so been dealing with more severe dislocations & pain day by day.

Toughest thing is being so tired I think. Usually I can push through the #EDS pain but #COVID19 has robbed me of energy to do so

One decent bit of advice I found was this from @theRCOT via @ultrasaurus

I’m trying more frequent & sustained resting rather than trying to go back full throttle like usual 😬

This weekend tho, palpitations, cold sweat, nausea & fatigue tell me I haven’t got the balance right

Anyone who’s got advice on how to recover from post-viral fatigue or specifically #LongHaulers #COVID19, advice and encouragement gratefully received. Especially if you also have hypermobility and/or #EhlersDanlos.

It’s been a very long 6 months 😩

And if I’ve failed to respond to email / text / etc, please know this is what has been going on, I haven’t intentionally ignored you, I’m just underwater.

If it’s urgent, pls do nudge/chase me. If it’s not urgent, pls wait a month or so 🙏🏽

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