MY STORY

I lOVED being a teacher…

Loved is a key word here because it is a role that I can no longer do: I have ME/cfs.

September 2021

My symptoms began in October 2019 with a feeling of severe fatigue. Where I could once walk to work, I now had to drive. I struggled to stand for more than 15 mins and found the noisy classroom atmosphere created sensory overload and made it difficult to process information. I have never been a quitter so I soldiered on, waiting for the symptoms to improve; convinced that this was some weird viral situation as often seems to happen in busy people.

One day, after two weeks of struggling, I had a sudden, severe dizzy spell. I couldn’t continue with my job and, after speaking to the doctor, was signed off for a couple of weeks. Following test after test, week after week, month after month Covid hit. The specialist appointments I had arranged were cancelled and I was no nearer to getting a reason for my body letting me down in this way: I was in limbo, trapped in the hell of not knowing what was wrong and the anger that, if I could just see the right specialist, I could be cured.

Over this time, although it was a kind of comfort that I was now in the same position as everyone else stuck at home, my symptoms began to worsen. I developed pain and a prickling sensation when I was too active, though I tried to be strong and push through, and chest pains with shortness of breath if I did too much. After scouring the NHS website for information about my group of symptoms I began to realise that this was probably ME/cfs. Reading up on the condition it seemed that graded exercise therapy was the suggested treatment so, as all medical support was out of bounds, began to push myself to walk each day, a little bit further each time. But this only worsened my symptoms…

Following the removal of lockdown and by pushing my GP I finally got a neurology appointment. After more rounds of testing I was given a provisional diagnosis of ME/cfs; what I had suspected all along.

February 2022

As you can see, my symptoms deteriorated further and I have been unable to even focus to write. My symptoms now mean that I am barely able to leave the house unaided, relying on transport from my husband for necessary appointments. I cannot walk far and am getting a wheelchair soon so I can be taken out in the fresh air. It means that I am unable to share my book with schools and families as I’d hoped to do and I feel quite jealous of Livingstone who WAS able to go exploring.

My hope is that, one day, people will stop seeing ME as a psychological/imaginary condition and recognise it for what it is: “..a complex multisystem illness that affects the brain and muscle function and, in some cases, other body systems as well” [the ME association].

It is a debilitating, unpredictable and lonely illness.

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