Thread by @K8Stott

August 2021

Over the following weeks, I develop a limp and the pain in my hips and lower back creeps in insidiously. I’m now bedbound. My biologics are upped to weekly and I’m diagnosed with Enteropathic Arthiritis. Rheumatology now discharge me.

I start to develop ptosis (my eye literally closes by itself at certain points of the day) I’m in too much pain to take notice. I’ve developed tinnitus in my right ear. I feel all my senses are heightened and cannot focus at all.

September - November 2021

Exhaustion sets in to a level I’ve never ever experienced I’m sleeping 6hours some days and still sleeping through nights. I cannot wake up and it’s impossible to move. I feel like I’m operating at 5%

I start to become easily confused, I cant remember words mid sentence. Remembering names, places, what’s happened in a day becomes impossible.

November 2021
I decide to muster up some energy to see ophthalmologist as my vision is so blurry and ptosis is happening regularly , I’ve now given up driving as I can’t see properly and I don’t trust my own reaction timing. It’s near impossible to remain standing.

December 2021

I’m finding it hard to stand. Breathing is really difficult when doing things. Especially when climbing stairs and picking things up etc. my Sp02 drops on a regular basis.

I take and allergic reaction to hair dye. 24hrs later I’m crawling up the stairs with vertigo and being sick. The next day im admitted to A and E with breathing difficulties. I’m quickly discharged and sleep for 2 days after.

January 2022 to present
I see a private neurologist in Glasgow that diagnoses me with Long Covid and ME. I then catch covid again in March 2022. The old chest rash reappears and every symptom then again gets worse.

The last 2 years haven’t been linear, I’ve had times of recovery, followed by infections and 5 vaccines that I now know for sure flare up my existing symptoms even more.

I’m very much housebound at the moment, I am still getting used to Pacing and not taking advantage of energy and pushing myself. I am regularly choosing between having enough energy to have a bath or cook within the space of a day.

It is a stark contrast of life prior to catching covid in 2020.
But I am hopeful that things will change soon, better treatments will become available. My story is not unique.

I will continue to speak up when I can but it is so hard to show the toll that advocating takes whilst being sick. We must #TreatLongCovid now.

My final note: I went to bed in March 2020 with a sore throat… I now walk with crutches and require a wheelchair for any long distances.
Our governments desperately need to wake up to the reality of this. Our UK strategy for LC as a nation is woeful.