M.E. Myself and I
How do I plan for a future that my health won’t let me imagine?
Everyone’s story about their life with ME/CFS is so different it’s a wonder that it’s the same illness at all. However, it seems like most times the condition kicks off because of trauma to the body, in the aftermath of a virus, an accident, or a bad bout of mental health issues. At some point in your life the symptoms begin and everything changes.
My story is quite different. I’m somewhat an anomaly, as far as I know. My life didn’t change on one fateful day, and nothing happened to set my illness off. I’ve had it for as long as I can remember. While I was not diagnosed until my early 20s, fatigue and pain plagued my teens and childhood. This is my story.
My earliest memory of it was horrible aches I got in my legs as a child. I went to my GP but he chalked it up to growing pains and dismissed me. If the classroom got too loud, I would return home with blinding headaches. But they were similarly dismissed. I didn’t have many friends and I spent most my time outside, by myself. Thankfully, I still had the energy to climb trees and explore fields at this time, and doing it alone meant I could follow my own pace. Being in nature and away from noise eased me. Looking back now it was clear that the nerve pain associated with ME had begun, as had the sensitivity to sensory overloads. I did manage to keep up with some of my hobbies such as dancing, Scouts, and Tae-Kwon-Do.
I can’t remember when my sleep problems began but I know they were in full swing by 6th class (age 12). This was when my school grades began to falter, and by the time I entered secondary school the following year I was living in a haze of brain fog and exhaustion. I had started to give up a lot of my extra-curricular activities due to this tiredness. Dancing became a thing of the past, as did Tae-Kwon-Do. I managed to hang on to the Scouts for another year or so, but only just. Nothing in my lessons ever sunk in. Classes became moments where I could rest from the walk between classrooms. Even eating lunch left me exhausted and to this day, I don’t know how I ever managed the 15-minute walk to the car with a bag so heavy with textbooks.
Honestly, I don’t remember too much about this time. The unknown illness felt like a large boulder I had to carry around with me, while I was constantly dismissed as “just going through what every teenager went through” and called lazy.
Then respite came when I was 15 and entered Transition Year. For those outside Ireland, Transition Year is an optional year before the final two years of school. There are no exams, classes are fun and experimental with a field trip and project-based curriculum. Most importantly for me, there was no pressure. I had lost friends the previous few years because I just didn’t have the energy to socialise, and I had no interest in dating because I had way too much else going on. This year off gave me the time to rest and recuperate a bit and finally, I had energy to hang out and I made some wonderful friends that year, friends I still hold dear.
My final two years of school were a lot easier than the first three had been. The break had given me enough energy to concentrate in class, allowing me to pass my exams and I did surprisingly well in my Leaving Cert. However, I was pushing myself more than I thought and once I finished the exams in my last year of school I crashed, and I crashed hard. I slept for over 12 hours a day and only had the energy to be out of my bed for a few hours.
I only had a few months’ rest before being thrown into college life, and I couldn’t handle it. Waking up in the morning was impossible; every day when I opened my eyes, it felt like I hadn’t slept for weeks. I struggled to keep my eyes open and my brain rarely woke up. Focusing on classes was equally impossible and the walk from one campus building to another was painful. It was a big campus and sometimes the walk took over 15 minutes. I spent most of those months dissociating because my body simply could not handle it, and by November, after an exam in which I couldn’t answer a single question, I realised I hadn’t learnt a thing in three months. I dropped out before Christmas.
I spent the next few months in a deep depression and once again doctors were finding nothing wrong with me, telling me it was still just a ‘teenager thing’. Perhaps earlier than I was ready for, I applied for a photography course the following year. In the meantime, I slept and binge watched The Ellen DeGeneres Show. Not my finest hour, but whatever.
I found a place to live near my new college, but it was still 20 minutes away and that one walk messed me up for the rest of the day. I was in a daze in classes and could barely register what anyone was saying to me. By the time I completed the return walk home I would collapse on my bed, only managing to rise again to feed myself, before I was right back in for the night. Once every month or so I would knock back a cocktail of Red Bull and Solpadine and head out for the night with my friends. This was the most my social life amounted to for some time. After those nights, I’d be bedridden for days, and I willingly missed college just for those nights and for the illusion of a social life. In my second year I moved 10 minutes closer to college, but that walk still set me up for a day of pain, cloudiness, and un-productivity.
In the winter of 2010, it snowed heavily in Dublin. We hadn’t seen proper snow since I was a kid, and I was so excited. I love the enchanting nature of it, and as Lorelei Gilmore once said, “Everything’s magical when it snows”. However, reality quickly stomped that idea into the ground. The pain in my legs caused by the cold was so intense that I needed a cane to walk. After a while, my wrists would become so sore I couldn’t use it anymore. I was in such a haze of pain that I don’t remember anything about that year. Along with my pain, I now had numbness in my face and when I was at my most tired, I would even slur my words. My spacial awareness had all but vanished, and loud noises overwhelmed me.
What I do know about that time is that I had become desperate enough to change doctors, which set me on my course to a diagnosis. I was referred to a lung specialist because of the tightness in my chest, and they found nothing. I was given an emergency MRI because my spacial and numbness problems made them suspect a brain tumour. They found nothing. Then eventually I was sent to a rheumatologist. At first he condescendingly told me this was just what being a teenager was like. I reminded him I was 22. So, he diagnosed me with ME/CFS, then known in Ireland as just Chronic Fatigue Syndrome. It’s a complex condition with a wide range of symptoms such as pain, exhaustion, sleep problems, brain fog, dizziness, weakness, digestive issues, muscle weakness, irregular heartbeat, food sensitivities, night sweats, I could go on.
The relief was overwhelming. Finally, I could put a name to what was wrong me. Finally, I had proof that I wasn’t simply a flawed human being. There was something wrong. Though, it wasn’t long before that fire began to burn out, as I learnt there was no cure, no treatment, and absolutely nothing I could do about my condition.
So, I finished college in the same haze that I started it in, and honestly I don’t really remember any of it. I’ve kept a few friends from that time but on the whole, I recall little of anyone else. I moved closer to the city centre the following year and started a music magazine with my best friend. Meanwhile I kept my eye on the job market, hoping to find something my body would allow me to do. One summer when I was still in college, I had volunteered with the animal rescue charity PAWS to do street sales, but that was exhausting and it should have taught me a lesson on my limitations. But as I said, I barely remembered it. For the most part I refused to accept how limited I was in the jobs that I could do, but at the least, I accepted that I wouldn’t be able to do full-time work and that I wouldn’t be able to do much travelling. So I spent almost an entire year finding something suitable.
Eventually a photography job opened up at Dublin Zoo, which was only 10 minutes away from my house on the bus, so I went for it. It was a standing job and maybe part of me knew I couldn’t do it, but I ignored it as I was so desperate to work. I landed the job easily and started, and I loved it immediately. I got to socialise with everyone and go see the animals at lunch. I’m an effective saleswoman so I did quite well and embarrassingly, found myself much better at selling my photos than I was at taking them. (Thanks photography degree!) I only worked three days a week, but after the first week I started to falter and by week three I had to quit. I was heartbroken. Nothing I had to leave before due to my illness hit me quite as hard as that did. I soon ran out of money and had to move back home with my parents.
I got a job working four hours a week doing graphic design at an Arts and Culture Centre and I was spending the remainder of my time resting or occasionally trying to exercise, because graded exercise therapy (GET) was the only suggested treatment I could find at the time. The theory behind GET was that the body had become unaccustomed to exercise, and it needed to be reintroduced slowly. This made no sense to me as the exhaustion stopped me from being active, not the other way around. But I tried it anyway because I didn’t know what else to do and unsurprisingly, my symptoms got worse. I had to leave that job because even those four hours were overwhelming, and I spent most of that next year in bed. This brought an end to a lot of my friendships and it was heartbreaking, but I had reached a point where I could barely get out of bed and even texting was exhausting.
All I could really manage during this time was eating. I decided to put all my energy into that and started to eat as healthily as I could. Not only did this fail to help my energy, but I ended up gaining weight and went up three stone. Carrying around weight I previously didn’t have didn’t help with my energy levels or aches either. I suspect now that much of the apparent weight gain was swelling and inflammation. Once I reverted to my previous diet, I started to feel a bit better. With the combination of anti-depressants and this small improvement, I made some new friends online and eventually met them in real life. I still only had the energy to socialise once every few weeks but having the energy to socialise online really made a huge difference. This time I put all my energy into socialising, but unfortunately, I wasn’t pacing myself. I had gotten so excited by this newfound energy, new friends, and fulfilling my extroverted nature that I overdid it. This, combined with travelling to Dublin to see a guy I was dating every single weekend, eventually burnt me out.
By November 2018 I was miserable. I was in constant pain, I was tired, and I had nothing in my life that was fulfilling in any way. I’d tried again and again to find work and I’d tried again and again to study, and I’d tried again and again to maintain a social life. In December, a rejection letter denying me rent assistance further solidified for me that I had no hope of ever moving out of my parent’s house (which is far away from my friends, shops, and any amenities or care), or that I even had a future at all.
After trying so hard for so long, I felt dejected and I gave up. Then the relationship ended. I spent most days for the next few months in bed, this time due more to depression than exhaustion. This led into me checking into a mental health facility where I spent five weeks working on myself, my self-esteem, and how I had gotten to that point.
I’ve been out for a few months now and I can’t say for sure that anything is going to be that much better. I’m still as sick as I was before and while I’ve learnt to pace myself, this is still something I am always going to have to live with. I feel hopeful for now because I don’t think I can mentally handle feeling otherwise at the moment. Sure, it seems like they’re finding new theories on what causes ME/CFS every day, but it’s going to be years before any treatment reaches patients. So I’m just pushing on, taking the world day by day, because what else can I do?
No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.
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Previously on No End In Sight — I’m Really Good At Being Sick
