My Chronic Illness Story IV

I continued to go to the doctor. I had ECG’s, blood tests, refferals to cardiology, ENT and mental health services. I woke up with vertigo more and more and slowly found I was increasingly exhausted, sick and in pain. Working less and less. Sitting in the bottom of the shower to wash. Unable to stand to cook or sit up to talk to my friends.

Tarron continued to see me. We just watched films and he cooked dinner at mine. In the end, we spent our time off staying at the retreat centre where I was working (where I was being looked after), with me struggling everyday to get out of bed.

One evening, at the retreat, I slumped onto the floor in the bathroom. Every time I tried to move my heart raced, my vision dropped out and I felt as though my stomach was squeezing. My legs were blotched deep blue/purple and white. It was unignorable – I could not push this to one side.

I had to do something. And started frantically researching online.

My bruised looking legs, no longer having the strength to master stairs, sickness, nausea, hot flashes, light-headedness, heart palpitations, fainting, chest pain, dry mouth and eyes, diarrhoea, bloating, fainting, rashes, feelings of anxiety, trembling, vertigo, this ‘out of it’ feeling. I typed it all in. Searching medical sites, social medi posts and blogs.

It was the first time I saw it.

Postural Orthostatic Tachycardia Syndrome. POTS. 

I found out more about the symptoms, why they happen and what causes it. I remember reading that: POTS won’t kill you and starting to cry. I felt so relieved that what I was experiencing was a medical issue, and that I could be helped.

The next day I went to see my GP again and asked if, in their opinion, it cause be POTS. We spoke about getting me a tilt table test (TTT). It seemed straightforward.

The next time I saw Tarron, I sat him down to explain that I was going to get it sorted! Oh how little did I knew.

Shortly after this, I came home from staying at the retreat and planned to wait for the tests and get back to work.

The wait time for the TTT was going to be a couple of months at least. And after a couple of days back at work I was losing my vision, sweating through my clothing, and had severe of pain and sickness – as well as feeling shaken with anxiety constantly.

I took my third trip to A&E that weekend, having experienced pre-syncope whenever a sat up and heart palpitations for approaching 24 hours. They said that I had tachycardia – but ultimatley, I needed a doctor to look into all of my symptoms. The whole experience was terrifying.

When I went back to work after that day I found myself with my head stuck to the desk, unsure of what was going on. And unable to wash or cook for myself; I collapsed into despair and I admitted that I felt unable to work anymore.

I pushed with everything I had and still it felt like sand running through my shaking fingers.

It was at this time I started I having big gaps in my vision, seeing black spots, experienced hot flashes, tinnitus, migranes and lightheadedness that meant I felt extremely insecure on the road. And stopped driving too.

I spoke to my doctor more and more on the phone, trying to push tests, and being told it’ll be a week, weeks, and another week.

Constantly feeling like I was on the brink of passing out and being sick. Constantly anxious about what was happening to my body and in fear of being left alone with no one knowing what was wrong.

I wanted an answer.

When would I be able to go back to work? Is it all perminant? Will I be able to live a normal life?

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