I’m willing to spam your dash just to get 1 person to understand. Because that means there is one more person in this world who understands my daily struggles. If 1 person reads this, learns something, realises they’re not alone - that’s all I want.
Myalgic Encephalomyelitis is a disease - I don’t care what anyone says. It is. Because of it I have to rest a lot, people call me lazy but I’m not - I used to love sport but now I physically can’t do it. It’s long and tiring and no one completely understands it, not even us who suffer with it.
So my story is behind the cut, I’m prone to rambling so be warned, it’s lengthy!
I have M.E. After 2 years of being well I’ve just hit a relapse again which has put my entire life on hold. I’ve had to put 2 of my A Levels on the back burner, I’ve had to stop going out, I’ve had to just stop and it’s so frustrating.
When I was diagnosed, nearly 6 years ago now, it took a year. It took a year for the doctors to tell me what was wrong with me. They thought I was attention seeking, just didn’t want to go to school. I love learning, but I was being bullied. Doctors took the ‘I’m being bullied’ as ‘You’re not really ill, you’re lying. You just don’t want to go to school. Stop wasting our time’. It took 5 days in hospital after 6 months of being ill for them to realise that maybe I was actually ill and even then it was 5 months before I was officially diagnosed.
In all my diagnoses took a year. A year of slowly getting worse; no one understanding but my family. It was torture, for them and me alike
Eventually I was bedbound, I couldn’t walk, I couldn’t wash my hair, I could hardly eat anything myself & I couldn’t go outside - because I became sensitive to both heat and light, bringing me out in blisters at the very slightest exposure. Every little thing exhausted me. And I got no help, my mum got no help for helping me. People forgot about me, to be honest, I forgot about me. I forgot the person I used to be. I became just a shell of a person, I lost all get up and go.
Just some examples of things that both physically and mentally exhausted me:
- Getting Dressed
- Having a conversation
- Walking - something which over time became increasingly difficult to the point I just couldn’t any more.
- Showering - thank god for baby wipes & dry shampoo!
When I woke up, I was more tired. When I did something like showered, I was exhausted for sometimes 2 days - then I had to do it again. I lost all focus on things, my attention span was terrible. I forgot things; like conversations I just had or what I had for dinner the night before. I became photosensitive; I had to cover myself head to toe in clothing & wear factor 50 & a hat because the sun physically hurt me.
Doctors asked if I was depressed, of course I was! At the time I was 14, I couldn’t walk, wash my hair, get dressed by myself. I was so utterly alone - the only friends I had were those online, more often than not miles away - I had no one, I could do nothing and even the one thing I loved - learning - was a chore because I couldn’t focus. I was sent to a psychiatrist; what could a psychiatrist do? That’s the standard treatment for a physical illness - a psychiatrist.
ME is not psychological, it’s physical, but medical professionals treated me like I was crazy; like I was making it up. There is NO CURE I accepted that long ago, but ‘coming to terms with it’ didn’t really help in any recovery; but I went religiously for 3 years because I got to vent my feelings, I got to go out & I didn’t have to burden my parents. The one thing I wished for but didn’t get is physical therapy to help me start walking again, my mum had to help me like I was a toddler again. Its the one thing I asked for, but no one seemed willing to help.
I’d be lying if I said at 15 I didn’t consider suicide. Something I’ve really only just come to terms with. I was so, utterly alone, I didn’t think I had a future. I’d just started to get better and I was back in the wheelchair - I did too much and took a turn and ended up back where I started. I was frustrated & angry. I felt like a burden on my family. But I didn’t, I stayed strong & carried on & I woke up the next day & for some reason I felt positive & I decided to make a cake for some reason unknown & I really enjoyed it. I felt accomplished, like I’d achieved something for the first time in a long time. & It was a struggle, I had to keep stopping & sitting down & resting - but god the cake was worth it!
I found myself doing that more often in the months after; baking. Slowly I could stand unaided more, I could do more before I had to rest. It was my personal version of physical therapy - and tasted good too! 6 months later I sat my GCSEs. I got 6 GCSEs, I was aiming for 12 but I was so proud of myself that I got those 6! & I got an A in English Literature - something I never thought would happen considering how little concentration I had & how reading made my brain hurt & how I forgot things!
The biggest challenge for me though was social. I was scared of people. I had anxiety attacks at the school gates, I couldn’t talk to people my own age - the only contact with people I had was adults; teachers, doctors, family… I had no idea how to behave like a teenager because I never got to be a teenager because this illness took over my life & no one understood this illness. So again, I felt alone. But I had supportive teachers and a family that had supported me this far.
Against all odds I started A Levels, but I kept myself to myself. Spoke only to teachers; people I felt comfortable talking to. People I knew how to talk to. I took a kind of vow of silence when I was in the classroom; the anxiety crippled me. I knew the answers but I never gave them. When I was asked to give a presentation, I got a doctors note because the thought of it was making me pass out with anxiety.
Now, nearly 2 years on from that, I’ve got friends & I’m still awkward but they’ve just accepted my quirks. But I’m in a relapse. This time my friends listen, they get it. They don’t judge me because I’m on crutches, sure I get looked at a bit strangely sometimes but I’m okay with that, it doesn’t make me feel as small as it used to. I just think “well I can kneecap you” and get on with it.
I’m aiming for University. I was hoping to go in September, but this relapse has pushed that all back - so now I’m aiming for next year instead. But I’m positive, the scientist in me is telling me it doesn’t matter how I get to where I want to be, as long as I get there in the end. There’s quick routes & slower routes & all different types of variables - but they all end in the same place. If I have to take the slower route then so be it.
So anyone who has ME? Stay strong and don’t let go of your dreams. Because there are so many ways you can get to them. Never give up. I’m so glad I didn’t.