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My Long Covid Diary: the quest for answers

[For info – I had the second Astra Zeneca vaccine 4 months before I contracted Covid]

I had convinced myself that if I could only get to the end of 12 weeks with COVID (see my earlier post 12 weeks of hell) that somehow I’d miraculously recover. Week 13 brought the depressing realisation that there was not going to be a quick or easy way to get my life back. I needed to find some medical help for my Long Covid symptoms.

I consider myself to be a fairly chipper sort of gal; my glass is usually half full and I generally expect the best outcome in any given situation. But after 12 weeks on the sofa even I was struggling to keep my spirits up. This uncharacteristic gloom was underpinned by dreadful insomnia which turned my world into a surreal state of existence.

With no possibility of any help from a mythical NHS Long Covid Clinic on the horizon, I needed to find another option.

After nearly 25 years practicing in the legal profession I fell back on my years of experience and the mantra that I repeat to my trainee solicitors: “if you feel lost and don’t know what to do…write a list”.

My symptoms seem so wild and varied that I divide my body into sections to find a starting point. The list looks like this:

  • Head: Tinnitus; hyperacusis; ear pain; eye pain; increased eye pressure; deteriorating vision; dizziness; headaches; insomnia; runny nose; sore throat; sneezing fits; variable loss of taste and smell; jaw and teeth pain and swollen glands in my neck.
  • Chest: Breathlessness; feeling like I’ve been punched the back, a concrete block in on my chest; palpitations and a forceful heartbeat.
  • Body: intermittent joint and muscle pain, abdominal pain, dodgy gastric issues.
  • Fatigue: extreme exhaustion after any exertion mental or physical.
  • Weird symptoms: sweating spells (whole body – but not my chest neck or head); chills (only down my back, backs of my arms and legs (sometimes only the left side of my body)); pins and needles in my temples (wakes me up in the night); ice cold forehead (wakes me up in the night); sensory overload and hoarseness upon slight physical or mental exertion.

I decided that my starting point would be the symptoms that were affecting me the most. The tinnitus was the obvious one, followed by the head, fatigue and chest issues. It would be easy enough to find an ENT consultant to check my ears but finding a neurologist who specialises in Long Covid would be more difficult.

I thought that a good place to start would be to search articles about people with similar problems.

Since getting Covid back in October 2021 I had been studiously avoiding the Long-Covid articles, stories and support groups. The last thing I needed were tales of people who were ill like me and simply weren’t getting better. In addition I didn’t want to read about other people’s symptoms and then start looking for issues that I might not have.

However, the time was now right for me to start trawling the internet to find out how others were faring and, more importantly, who they were seeking help from.

With the privilege of my husband’s work’s medical insurance behind me I set out to look for a medical consultant with some experience of Long Covid.

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