11.5.18

My M.E Story



As it's M.E Awareness day on the 12th May, I thought I should finally tell my M.E story on my blog, and hopefully raise awareness for those who are too unwell to speak up themselves.  I've also kindly shared with you a picture of me severely unwell. No, thats not smudged eyeliner, it's horrific dark circles!  For those who don't know, M.E (also known as CFS/ Chronic Fatigue Syndrome) is a chronic illness, which effects around 250,000 people in the UK alone.  Although it's known as chronic fatigue syndrome, the symptoms are much wider than that, and more severe than 'just being tired all of the time'.  The symptoms vary from patient to patient, but generally include joint paint, muscle pain, nerve pain, fatigue, migraine, digestive issues, brain fog, insomnia, anxiety & depression, fast heart rate, breathing difficulties, sore throat and sensitivity to light and sound. God, I'm exhausted just writing out the symptom list, ha.

My M.E started when I was 16, I'd just had swine flu and had my appendix out (double whammy). After that, I was never right. I was always off sick from sixth form, I couldn't walk very far, I had insomnia and I caught every illness that was going around. I just thought I had a weakened immune system, when finally a doctor told me that she thinks I have chronic fatigue syndrome. It took around 7 months to get an official diagnosis (after loads of tests and a second doctor who told me it's all in my head). But I weirdly felt relieved when I had a piece of paper with my diagnosis on it. 

That was until I realised there was no cure and realised I was stuck like this until my body decided to get better again (unfortunately, not yet!). However,  I'm so so lucky enough that my illness is not severe, and I'm able to work and have a relatively active social life. Whereas some sufferers are bed bound for years, have to be fed from a tube and cannot be around noise or light. Sadly, these people suffer in silence as most doctors don't believe them, and there is still no cure. Fingers crossed this year is the year! But until then, any awareness helps M.E sufferers.


So... what does it really feel like to have Myalgic Encephalomyltitis?

When I'm asked to describe what it feels like, my first comparison is 'imagine you had the flu every day, with a hangover'.  The kinda flu which entails a terrible sore throat, fuzzy brain, achey muscles and no energy to leave bed.  At my worst, I can't lift a fork, brush my teeth, think, hold my phone or even stand up.  Some days its better, some days its worse, but generally, that's how we feel.

How do you manage your symptoms?

Most of the time, symptoms are unmanageable. However, there's a thing called 'pacing', which most of us chronic illness sufferers try and do.  We're like a wind up toy/ a wind up torch. We only have so much energy to give, before we have to rest and wind up again. Good analogy, eh? You'll also find me having rest days between social activities, or sat in bed with an ice pack or hot water bottle.

If you wanna find out more...

I recommend two documentaries.  Unrest, which is on Netflix and M.E and Me on BBC Newsbeat. Both give real life documentations from sufferers. 


Us M.E sufferers don't ask for much. We just ask that you believe us, don't get mad when we cancel plans and offer to help if we can't do things ourselves (offering to cook dinner is always a bonus).  So there we have it, now please excuse me, I'm off to make myself another ice pack and head off to bed!
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