Where the Journey Begins
I find it hard to remember what my life was like before I developed M.E. I don’t remember what it was like to wake up refreshed and pain free, or what it was like to get through a day without needing to rest. When I was twenty I caught Glandular Fever and I don’t know why, but it triggered something in my body that has affected my life for four years now. I remember feeling like I had the flu, I felt run down and generally unwell; my General Practitioner ran tests and told me I was suffering with Glandular Fever and to give it a couple of weeks. A couple of weeks passed, and my sore throat disappeared, but I was left with a fatigue that instead of getting better, was worsening to the point I barely left my bed. More weeks passed, and the fatigue was overwhelming; I woke up tired every morning and no amount of sleep changed it. I was prescribed sleeping tablets and told to stay to a strict schedule at night and set an alarm for morning. It didn’t change anything: it didn’t matter how early I went to bed, or how many hours I slept, the fatigue remained, and I started to feel achy and sore all over.
The next six months consisted of returning to my GP, having blood test after blood test and having it come back clear. I was becoming frustrated at being repeatedly told there was nothing physically wrong with me. I had a history of depression, so doctors kept telling me it was my mood, and my anti-depressants were increased; I was referred for therapy. My mood was suffering, but it wasn’t because I was depressed, it was because I was physically feeling worse and worse, but I was no closer to figuring out what was causing it.
At around nine months my GP diagnosed Post-Viral Fatigue Syndrome reluctantly: she’d run all the tests she could and ruled everything else out. I was referred to a rheumatologist because the aches were getting worse: I started to get pain in all my joints, they would seize up and be tender constantly. The rheumatologist arranged scans of my worst areas, which were my lower back and wrists. I finally felt like something was being done, and I had hope that I might finally get answers, but the scans came back clear, and I was no closer to discovering what was wrong with my body. I remember my final appointment with the rheumatologist well, because it made me feel so hopeless. I was told that physically I was a healthy 21-year-old and there was no reason for the pain and fatigue plaguing my life; again I was told it was my depression and I was told to stay as active as possible and push through the fatigue.
When I turned 22, I was just stumbling through life. I couldn’t work because of the fatigue; it made my life hell. I was repeatedly told to push myself and be as active as I could, but I was struggling to manage the effects the fatigue was having; it was spreading to other aspects of my life. I started to lose my concentration, which was a big thing for me because reading is my passion, but I was finding it hard to focus or concentrate on anything. I started to wake up throughout the night because my muscles had cramped up and my joints were sore where I’d been lying on them. I’d wake up every morning with pain in my hands, shoulders and ankles. I became more clumsy and forgetful, I’d forget things I’d just done, or someone would tell me something and it would just go completely over my head. I even found it hard to hold a conversation at times because my head constantly felt foggy. I started to sweat more, I couldn’t go into shops or out in public because I constantly felt flushed and sweaty, and I didn’t want people to notice.
I went back to my GP and begged for help; I just wanted an answer. People kept telling me Post-Viral Fatigue Syndrome wasn’t long term, but I’d been suffering for two years at this point and it was not getting any better: more and more symptoms were surfacing, and I wanted some sort of treatment or relief. I was prescribed painkillers and physiotherapy, which I was hopeful about. I had maybe three physio sessions before I was discharged. It was so disheartening. I was given some small exercises to do every day and told to increase them week by week, When the pain remained and I didn’t make the progress expected of me, I was told to go away and continue the exercises for a few more months, and that was it – I never got another appointment or phone call. I felt completely abandoned and let down by the system.
It is now November 2018: I was finally diagnosed with Chronic Fatigue Syndrome or M.E. just over a year ago, and more recently I also received a diagnosis of Fibromyalgia. I was relieved to finally have my illness acknowledged and joining M.E. groups online really helped me. I started to see that this condition is different for everyone, and everyone tackles it differently. I also realised that I needed to start listening to my body and ignoring the people who told me to push myself and force myself through the pain and fatigue, because it was making me worse. I started to nap for a couple of hours mid-afternoon because I could barely function as the day went on; I planned activities and social situations so that I always had a rest day after to recover.
It's been four years of constantly chasing answers and trying new medications and new therapies. I’m lucky to have a great support system in my family, who don’t judge me and allow me just to be myself and accept all the challenges that plague my life. My Mum was the person who fought the most for my diagnosis: I wanted to give up so many times, but my Mum forced me to return for help again and again; she came to every appointment and argued on my behalf for better treatment and help.
I’m at a point now where I just try to get on with life as normally as possible; I rest when I need to rest, and I do what I can to stay active. It still hurts when people judge me and call me lazy or make comments about the way I handle my illness, but I’ve finally learned that it is my illness and I must handle it in the best way for me, not anyone else. I finally enrolled on an Open University degree in English Language and Literature, which has always been my passion, and I’m determined to get that degree, despite the challenges I face every day. I’m always going to face limits and obstacles with this illness: it’s so misunderstood that there isn’t enough help for sufferers. But it’s taught me to make the most of the small things in life and be thankful for every good day that comes along. It’s a constant battle living with M.E. but it’s my life and I’ve been through too much to give up.