This Isn't Normal...


The exact cause of Myalgic Encephalomyelitis (M.E) is unknown, however there is a theory that some viral or bacterial infections such as glandular fever can trigger it. Other suggested triggers include traumatic events (such as an accident, hormone imbalance, psychiatric problems (stress, depression, mental exhaustion or emotional trauma) and issues with the immune system. For some people, the trigger is clear and they can pinpoint exactly why and when they became unwell. For others, it may be the repetition or combination of these factors which caused them to become unwell, so their symptoms may have worsened gradually over time. M.E is a fluctuating illness so some days may be better and you feel like a normal person and some days may be so bad that you cannot even make it out of bed.

(I apologise in advance for the long post)

I don't remember the point at which I started to feel symptoms but I do remember having a long period of illness. During 2010, whilst studying for my GCSE's, I contracted multiple viral / bacterial infections one after another and was having a lot of time off school. My doctor and I are pretty sure that this is when I first became unwell, with stress and repeated infections triggering the illness. Since then, being tired was just part of who I was, but I thought that it was normal. I noticed that I felt 'off' most days and felt sick a lot more often and also started getting migraines. Gradually, I found it harder to keep up with homework, preferring to go to bed early and finish it off before morning registration.  I also needed to nap more often and would rather spend all day in bed resting rather than go out and meet my friends, although I dragged myself out most weekends. Giving up hobbies is something that I regret, but my body couldn't cope with high energy activities such as Irish dancing and trampolining. I took a lot longer than my peers to recover from exercise even though I was super fit. For the next few days, I would be very tired and have aches in my joints and muscles that took days to improve, even with copious amounts of anti-inflammatory gel, pain relief and heat therapy. Although I had some time off school, I did really well in my GCSE's and was accepted into sixth form at a nearby grammar school.

My attendance whilst doing my A-Levels was pretty awful, and I ended up on a report card that had to be signed every morning at registration. This was totally unlike me as I had never really been in trouble at school before. Every morning, I struggled to get out of bed. I just felt completely unrested, shaky and nauseous, even though I mostly slept for 8-10 hours every night. I hated calling in sick as I felt that people would judge me or assume that I was lying, because I called in so frequently. To describe it, I felt like I was battling the flu or a similar virus constantly. I remember being so exhausted that I physically couldn't keep my eyes open in a lot of my classes. Eventually, my work suffered, partly because I missed key lessons, and partly because I didn't like admitting that I was struggling at a new school. But I did my best to catch up on what I was missing, and I even had a private maths tutor. I could do the work, but it just took me 10x longer to do anything, meaning I was always playing catch up. Ultimately I was miserable. Sixth form became an awful experience and I was under huge amounts of stress, which probably exacerbated my symptoms. The only things that kept me happy during this time were my weekend jobs, going climbing and going to my amateur dramatics club. I began to prioritise them over my education, which was one of the best things I did for my own mental wellbeing. After a huge battle with my school, I eventually was allowed to drop a subject which allowed me to focus on the ones I was better at, and gave me a better chance of getting into my chosen university. I came out of sixth form with pretty average grades, but good enough to get me into university to study for my dream job as a therapeutic radiographer.

At university, I handled the academic side reasonably well, even if I was still missing some lectures. As part of my course, I was required to do 14 weeks of clinical placement every year. This was the part I couldn't do. I couldn't hack the long commutes, the long shifts and the never-ending paperwork. I always felt 'not quite myself' with bouts of nausea, stomach aches, migraines and needed a lot of sleep to function on a basic level. In the middle of my first placement, I had a mini breakdown as I thought that it was going to be like this for the rest of my career. The thought of not having any time to myself outside of work panicked me. I used to get home from placement and crash on my bed, without dinner, often still in my uniform. I could barely look after myself some days, let alone look after patients.
The social side of university was non-existent apart from going to a few local gigs. If I went out with friends, you could pretty much guarantee that I would want to go home earlier than everyone else, with alcohol only making me feel even more sleepy. I hated being that person that stopped having fun after 11pm but I couldn't cope. I eventually stopped going climbing, which was one of my passions in life, as again, I was always too tired to go and if I did go, it would take me days to recover. I lost a lot of strength over time and my muscles always felt weak. Opening doors became a huge task, which is pretty embarrassing coming from someone who used to climb for hours.

It wasn't until my third year at university that everything got completely on top of me. Falling asleep in a matter of seconds in random places at random times became 'my thing'. It's not really normal to fall asleep in the middle of brushing your hair! I started getting heart palpitations, becoming very faint and occasionally blacking out. During this time, I was under immense stress writing my dissertation. I became quite unwell and was pretty much confined to my room as all my energy was spent worrying about the piles of work I had to do. Joe became quite concerned, as up to that point, he had just thought (understandably) that I was being a huge wuss. He tried to explain to me just how bizzare this behaviour was and pleaded with me to see a doctor. Reluctantly, I made an appointment to see if I was okay.

My initial appointment was with a nurse practitioner, who thankfully took me seriously, and pointed out that what I was describing to her sounded like Myalgic Encephalomyelitis. (M.E) also known as Chronic Fatigue Syndrome (CFS). Coincidentally, she had recently been educated on the new M.E/CFS referral process. The criteria for referral was very specific so I had multiple blood tests and urine tests to rule out any underlying illness, disease and deficiencies. Everything came back normal. I was then referred to the Bristol M.E/CFS clinic for the re-confirmation of diagnosis and specialist help managing with a chronic illness. 

My university was supportive and gave me more time to complete my dissertation and I was given reasonable adjustments for my pre-qualifying placements. I was still very unwell during this time and still couldn't cope with reduced hours and hadn't adjusted to living with a chronic illness very well. But I made it through and finished my course and graduated with a 2:1.


So that's the beginning of my journey with M.E. I've since had a re-confirmation of my diagnosis by the specialist and attended the foundation sessions with the team at Cossham Hospital. Everyday is different but I've started to understand the illness more and I'm beginning to learn how to adjust and cope with it. 

I hope this post answers some questions I've been getting about how I was diagnosed!

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