Something Was Different.
I don’t remember a time in my life where I didn’t have to consider my health in everything I do. I caught glandular fever when I was 15 and since then, my life has changed. I noticed that I couldn’t keep up with other people my age; as someone who was so hardworking, determined, passionate… I couldn’t understand why my body wasn’t able to just do what I wanted it to. I was struggling, but not enough for anyone to notice - certainly not doctors, even though I pleaded with them to run more tests. On paper, I was fit and healthy, so I was dismissed time and again. I started to convince myself that it must be in my own head; something too many chronically ill sufferers tend to do when our conditions are so under-researched. So I kept going - until I couldn’t anymore.
I Was Different.
It was my first year of university when I noticed what couldn’t be ignored anymore. When other people said they were tired, I assumed they felt what I felt; the Earth-shattering fatigue that meant you couldn’t move, couldn’t eat, couldn’t breathe. But their tired still allowed them to go to lectures, then go to work, then go on nights out - what was wrong with me, if I couldn’t do that? Throughout the year, I was in a new city and studying performing arts. I also had four back-to-back infections, as if my body just couldn’t catch a break, couldn’t heal from what was going on. I finished the year in hospital, highly medicated, wondering what all this meant. That summer I got glandular fever again, and it couldn’t be ignored anymore. After years of searching, I was diagnosed with Myalgic Encephalomyelitis.
What the Heck is ME?
I hadn’t even heard of the condition before, only its variation of Chronic Fatigue Syndrome. My goodness, it’s so much more than that; it is fatigue on a cellular level, where your body cannot produce energy the same as your healthy counterparts. I had a fairly moderate case, which meant I couldn’t eat, wash, dress unaided a lot of the time. I felt like I had failed as if I could’ve somehow stopped this condition from dominating my life - you’ll find a lot of people struggle with this when they’re chronically ill, as we’re often medically gaslit. I tried to keep up still. I didn’t want to admit defeat or surrender to this state of living. I changed my course to a less active one that I didn’t enjoy as much, I still insisted on living with my friends at uni, which resulted in debt for housing costs as I couldn’t work and ended up needing physical help from my friends more often than I wanted to admit. I ended up spending 80% of the time in bed. I was miserable. I felt confused, abandoned. I didn’t know what to do.
Okay, so how can I be me, with M.E?
I eventually realized that this wasn’t a short-term sort of thing. Was I disabled? How does someone know when they’re disabled? I felt like I was lying as if I needed someone else to look at me and tell me ‘yes, you qualify for being disabled. Here’s your introduction pack and blue badge.’ I moved back home, going through the process of applying for financial aid for disability. Weirdly enough, when the pandemic hit, it gave me a chance to level the playing field; I could continue university because they had started adapting courses to do online, in my own room. I thought I’d finally got the hang of living like this, of coexisting with this condition and its limitations. It wouldn’t stop me from living though, right?
Wrong. Things changed; again.
At the start of 2021, I started sharing my story through my Instagram account @ellie_ology, documenting what my health journey had been and trying to show that it didn’t have to change who you were. And then I relapsed. I got the worst I have ever been. I still am. There was no warning sign, nothing I did wrong; my life was reduced to 90% in bed, full-time care from my family. I withdrew from the university. I felt like I fit into the “definition” of disabled because my life WAS significantly disabled and different from anything I’d ever existed in before. I kept wondering if I would get better. I’m still wondering if, one day, there’ll be better days.
And that’s where we’re at, folks…
I guess my perspective on myself and life, in general, has changed, given all that’s happened to me. I don’t see the world the same way many others my age do, because I have seen firsthand how quickly things can change. I’m no longer aiming for a full recovery; just a balance, to find some brighter days in the mix, too. M.E. affects everything. A lot of people told me that it didn’t have to, but they were kidding themselves in my opinion. It took a lot from me, but it also made me into a far more grateful, compassionate, and understanding individual. I’m not grateful that this is what’s happened to me, but this is the life that I have. Who knows, maybe it’s part of my whole grand life’s purpose. To get the word out there, so that one day, people won’t have to ask what the hell M.E. is, but already understand it as well as conditions such as MS or cancer. For the first time in my life, I have no plans for the foreseeable. I don’t know what tomorrow is going to look like - I’m just taking it all as it comes. Some days are bright enough that I can get dressed, maybe take some photos for my Instagram. Most are in bed, in a world of one room. It’s my journey. I would love it if you would come along for the ride…