Sounds like an inspirational heading written the wrong way around, right?! I’ve sat down to write this a few times but what I’ve start writing always seems too sombre, too moany. It’s hard to get the balance right. But, it’s ME awareness week (6 – 12th May) so I thought I should try again. Warning: It is still a bit too bleak for my liking but it’s important to me so hopefully it’s not too painful a read!
Let’s just dive straight in.
About two and a half years ago now I was in my last year of my undergraduate degree. I was busy. I worked whenever I could as an unpaid research assistant for my two supervisors, I was part of the university dance team who were starting to prepare for a competition, I was generally pretty fit and active; running 10k pretty regularly, doing lots of yoga, hiking and going to exercise classes (Zumba was my favourite). I was busy, but I was happy and I was busy because I was enthusiastic about everything I was doing (most of the time). I got a throat infection, nothing too major, and didn’t really take any time off because like I said, I was busy. I didn’t really think much of it and although I was still a bit tired my throat got better and I got over it.
The first thing I noticed was that I was starting to lose my balance a bit more than usual in dance class but I’ve never been a very good dancer so I thought I just needed to improve my core! It felt fairly innocuous. But then I started to lose my balance a little when I was just walking and I have a history of being pretty accomplished at that! It was a small enough blip that no one would notice and I could convince myself it wasn’t really happening. After wilfully ignoring everything for a couple of weeks I tried to go for a run and barely made it around the block, I didn’t know it then but that was the last time I’d run in two years. At that point I realised that I should probably ease off a little, take a break maybe. I was tired all the time, although tired doesn’t quite cut it. My body felt heavy like the air had become thicker or gravity more pronounced. I’d notice the weight of my arms when I brushed my teeth or washed my hair. Everything became that little bit harder.
Within about three months I had a headache from the moment I woke up to the moment I went to bed. Painkillers wouldn’t touch it and unless it was a particularly bad day I just got used to it. I felt nauseous often and the ground felt like rubber whenever I walked anywhere. I finally went to the doctors and got diagnosed with benign paroxysmal positional vertigo (try saying that 10 times quickly). I had some exercises to do at home which would miraculously make me better. Only they didn’t.
Within about 6 months I started getting a bit confused about things. Like, I got lost in my local supermarket. I bought my shopping and couldn’t remember how to get out of the store. In the same time period I also had to ask for something at the library and I couldn’t remember how. Both times I managed to stall until I figured things out but it left me shaken. I was also having chest pains which radiated into my back and left shoulder and down my left arm, which isn’t traditionally a good sign! I went back to the doctors and had lots of blood tests, an ECG and an MRI but they all eventually came back clear. Which is a good thing, right? This second doctor also asked about my mental health and my stress levels… a valid question. I really struggled with depression and self-harm as a teenager and that’s prominently on my record. I stood my ground in the surgery assuring him that my symptoms weren’t a result of university pressures and deep down I knew I was right, I knew something was seriously wrong with me. He agreed, which was a huge relief, but it did however leave me with a niggling doubt. Was it all actually just in my head? Was I just really stressed? Had I done this to myself somehow? Spoiler alert: that doubt still niggles away at me sometimes.
Anyway, despite everything I was still looking at masters courses. The 6 months hadn’t been a constant, linear decline. There were moments where everything lifted a little and felt ‘okay’ and that was enough to give me hope that I could still move forwards with my academic career. So, I dragged myself from Aberystwyth where I was doing my undergrad to Chester with my mum to have a look at the city and university (and more importantly find a graduation dress). The trip was as a whole all a bit too much. It floored me. There was a point when I was so exhausted that moving much wasn’t an option, my body was like lead and I had to crawl to the bathroom when I needed to go. I cried myself to sleep in my mum’s arms, well I say cry, but I was too tired for that so the tears just kind of rolled out. It was all very pitiful, but I was scared. I didn’t know what was wrong and I didn’t know how to fix it.
I recovered enough to make it back to Aberystwyth but my health was still following a general downward trajectory. To cut a long and meandering story short it wasn’t long before my best friend, G, who had been heroically doing her best to look after me dragged me to A&E. I’d been told by one of the doctors I’d seen that I probably had something ‘like’ post viral fatigue syndrome and I just needed to keep pushing through. That unfortunately wasn’t the best advice though and things escalated to a point where I was struggling to stay upright. G rescued me and intervened. I think I needed that. When all of your tests say that you’re fine you start to doubt yourself and I felt guilty about taking up a doctor’s time when I was just going back with the same problems. There comes a point when they run out of tests and ideas and you just lose hope. In hospital I had more blood tests, my third ECG and a CT scan. I had the CT scan because my left rib cage had become swollen and very uncomfortable. Still is a bit. All of the tests came back absolutely fine (no surprise at this point) and the doctor explained that it was ‘probably’ something chronic like chronic fatigue syndrome but as an A&E doctor it wasn’t her area of expertise. But she did arrange an echocardiogram, a weeklong ECG and an exercise test to check that my chest pains definitely weren’t anything more sinister (they weren’t). She also sent me back to see another GP.
As usual I felt like a total hypochondriac explaining my history and reeling off my long list of wide-ranging symptoms but the GP listened, had a little think and told me that it did indeed sound like I had ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome). She also told me that there was nothing I could do and that I probably wouldn’t get better, which was just magical news!
Within 9 months I was living back with my parents after somehow managing to finish my degree. There were some bright periods where I felt better and managed to get out and about but never with the same freedom and vigour that I’d had before and there was always payback. Something like celebrating a friend’s birthday could leave me bedbound for a few days…and I don’t just mean with a hangover! For the most part I was scared and housebound. It was awful. At my worst my muscles and joints hurt so I could never get comfortable, my muscles would twitch, I struggled to have a conversation because I couldn’t remember words or sentence structure, walking was incredibly difficult, I had to avoid loud noises, strong smells and bright lights because they increased my nausea and caused me physical pain, I had dreams and nightmares that were so vivid that it would take me a while to figure out that I was awake and then I’d struggle to get back to sleep despite being exhausted, I was always too hot, often itchy and I felt lightheaded.
It was about this time I also had my graduation. I was absolutely determined to go even if someone had to wheel me across the stage. I never thought I’d go to university and after finally deciding to in my late 20s with no formal qualifications it felt like an immense achievement. I spent the weeks beforehand doing as little as possible in preparation and managed to walk across the stage and bluff my way throughout the whole day. I had to wear earplugs to get through the constant clapping, took as many painkillers as I possibly could, barely spoke to anyone and lent heavily on both G and my parents but I genuinely think nobody noticed. By looking at my photos you’d never know how much I was struggling.
That was me at my worst and I’m obviously much better now because I’m living in Aberdeen and I’m halfway through the first year of my PhD. But, I still have ME, no matter how mild it is or how high functioning I am, it still dictates how I live my life. It has changed my life completely. How ME affects me now, 2 and a half years after it all started is what I’ll write about in my next blog post.
If you’ve made it all this way to the end I commend you! Bit of a slog I imagine! I think if I could give you one take home message from this it’s listen to your body. Don’t rest on something like ‘I’m young and fit’ to carry you through an illness. If you’re sick take some bloody time off, ease up a little. The amount of times someone with a raging cold tells me they can’t take a day or two off because they’re too busy, they’re fine, they’ll push through…it makes me want to scream! Listen. To. Your. Body!
In A Kingdom By The Sea 
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