Kate Stott Profile picture
Jun 7, 2022 16 tweets 4 min read Read on X
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. Image
Image
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. Image
Image
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. Image
Image
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.

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Kate Stott

Kate Stott Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @K8Stott

Jan 24
Things that have helped me get back to part time work after suffering from severe #LongCovid for 4 years 🧵:

Apheresis in Germany x4 rounds
Triple therapy - 1 year and ongoing
Pantoprazole
Invabradine
Weekly biologics for Crohn’s disease

& finally methotrexate. 1/2
I realise I am so very fortunate to be able to have accessed these treatments and we MUST start having the conversation about repurposing medications that are set out for current disease pathways.

The UK MUST start funding trials. People cannot wait any longer.
Nobody should be left behind within our community.

We need:

Funding

Trials

And proven treatments!

Time is UP. We need action.
Read 5 tweets
Jun 7, 2022
Up until now, I’ve shared snippets online of what living with #Longcovid has been like. I realise it’s hard to imagine a disease like this so here’s my story in pictures 🧵
I woke up 19th of March 2020 with a sore throat, a really high fever and the most peculiar feeling of burning painful legs. Over the next few days my glands in my neck swelled and I lost my sense of taste in smell. No cough so I presumed it must be throat infection. Image
Unlike my previous strep throat infections, I needed a second round of antibiotics. The symptoms this time seemed amped. Swelling in my glands, a continued fever and that strange burning sensation in my legs. The fatigue Is what I remember the most and how my body felt so heavy.
Read 13 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(