My M.E Story Part 1

Saturday, August 23, 2014

I've been thinking about writing this blog post for a while, but I've just never quite realised how I've wanted to put across my story. I was diagnosed with Chronic Fatigue Syndrome (C.F.S), otherwise known as M.E (the long unpronouncenable words myalgic encephalomyelitis) in 2011 whilst I was in my second year of university, but I had suffered the symptoms for approximately two years before this (and also suspected to be more).

Since writing my post a few months ago about my gallbladder operation I have wanted to talk about my experience with M.E. I do sometimes find it difficult to talk about, mainly because of pre-conceptions of what other people think and therefore act around me.

So, I'm going to split this up into parts, as I'm going to be covering about 5 years of my life in these blog posts.

I guess I will start with what M.E actually is (Just for the record, I will always refer to my condition as M.E and not Chronic Fatigue Syndrome/CFS, as I just feel that the latter doesn't describe my condition correctly - people just assume I'm tired all the time and it's not just that).

As described at patient.co.uk,

Myself just before I was diagnosed with M.E
- hence wearing comfy clothes
(a hoodie and most probably jogging bottoms too!)
"Chronic fatigue syndrome/ME is a condition where you have long-term disabling tiredness (fatigue). Most people with chronic fatigue syndrome/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known."
It's also worth noting that approximately 250,000 people in the UK have M.E/Chronic Fatigue Syndrome, whether it be severe or mild.

I used to live a fairly normal life, probably not too much different from what I actually live now. Before my symptoms began, I was completing my A Levels, I was a Young Leader at my local scout group, in a relationship and walking at least 2 miles a day. I was also had a Saturday job at Topshop and was a size 8 in clothes.

My symptoms started pretty much as soon as I started my foundation year of university. It first started with abdominal pains that were more focused to the right side of my body, and to this day I still experience this now. The pain could range from being an annoying ache or the most painful thing I had ever felt, and could spread across my whole abdomen. I would become dizzy and have sweats and nearly end up in hospital. I remember walking back to my halls of residence after finishing my lectures for the day and nearly collapsing in the street and seriously scaring my friends who were with me - that was when I realised that something was seriously wrong.

At this point in time I was also working at a well-known home improvement store as a cashier (or mainly manning the refunds desk as I was able to sit down - another symptom I have is that I cannot stand for long periods of time without feeling dizzy and eventually blacking out - I will go into more detail later about this). All was well and good when I started the job but as I got more and more sick this was reflecting in my work. Obviously the company could not sack me on the grounds of illness, and so instead kept me on a temporary contract and let me go when it ran out. I knew their real reasons for why they didn't want to keep me but if they had sacked me for being ill it would then give me grounds to take them to court! I felt this was incredibly sneaky and I was absolutely gutted to lose my job, it really made me feel like I couldn't manage anything as I was also struggling at university at the time. My job there was also my main income to live off at university as my whole loan went towards my rent - this gave me even more stress that I didn't need and I was very lucky that my parents funded my living costs in those months where I didn't have a job.

It was also around the time of losing my job that my relationship of around 17 months ended due to it not working out as long-distance. This was the last straw for my health and in the summer holidays I spent a majority of this time bedridden due to my M.E. Around this time my abdominal pains were getting increasingly worse and so I was hospitalised with suspected appendicitis. Typically, whenever I get sent to hospital for something my body gets better and my pains subsided for a while so I got to go home! (Of course, it never was appendicitis...)


So this is the end of part 1, I will put a link to all the other parts below as I write them! I hope you have enjoyed reading this post and it gives you an insight into what M.E is. If you have any questions feel free to post a comment below and I will be more than happy to answer them!

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