An article about this documentary about ME/CFS popped up on my twitter feed. I couldn’t be happier that this illness is beginning to get taken moe seriously and attention being drawn to it.
I was diagnosed with CFS in 2004.
I became ill with CFS some time between 2001-03.
It’s hard to pinpoint because in 2001, I wasn’t exactly looking after myself. The summer before I went to university I lost all my energy, had a really sore throat. I remember being on holiday visiting friends in the Netherlands and just wanting to sleep all the time. I went to university, got the ‘fresher’s flu’ and it just wouldn’t go away. After a month (and me collapsing twice one night trying to walk from my room to the toilets at the other end of the corridor) my friends dragged me to the doctor. Blood was taken. They discovered my glands were very swollen. They thought I had glandular fever – perhaps that I’d had it for several months.
By the next Spring, I seemed to be better…and was finally looking healthier than I had done in a long time.
Cue Spring 2003.
I’d had a cold, and again it just seemed to keep coming back. I was in the lead up to my final exams of second year and I was just tired all the time. Sometimes I woke up and couldn’t move my limbs. My joints hurt. I got blood tests for arthritis. My Mum panicked that I was developing Multiple Sclerosis. I would fall asleep in the library in the middle of the afternoon and have to be woken up by friends. I would be too tired and sometimes have to be walked home. I would be in tears with the pain in my joints and the exhaustion that no amount of sleep seemed to quench.
I got more blood tests. They tested me for pregnancy. (They never believe you if you say there’s no way you could be pregnant if you are a female university student).
All they could find was that I had ‘some sort of virus in my system’.
And they sent me on my merry way.
That summer was hell.
Some days I could have a normal day.
Other days I couldn’t get out of bed.
I remember my friend coming round and having to dry my hair for me – I couldn’t lift up my hairdryer. I remember crawling to the kitchen to put food in the oven and lying on the floor until it was ready. I couldn’t stand long enough to cook on a hob. I remember going to church and the 15 minute walk there exhausting me so much that I just lay on the floor at the back of the church. I couldn’t sit or stand.
I was really lucky.
I had friends that sat with me and didn’t expect me to be my usual chatty self. My friend kept me on his worship band team, and would let me sit if I needed to. He would even drive to get me so I wouldn’t use up this limited resource of energy walking. I had friends that took the time to tutor me when I hadn’t been able to absorb information in a lecture theatre. Friends that caught me when I passed out. Friends that drove me to the out of hours GP when I passed out in my car – again…I had a ‘virus’ (though once again, they thought I was pregnant and lying about it!). They kept me calm when I felt like I couldn’t breathe and was dizzy, or panicked because I couldn’t move my arms and legs. They send me notes. They gave me music to listen to.
I also had to put up with the people who thought I was faking it. Who labelled me as unreliable – like I chose what days I felt good or couldn’t move. One time I even got told off by a pastor for sitting down to sing. I didn’t often have energy in those moments to respond.
Eventually I got better. I don’t think CFS ever goes away fully. But I got better. I also got better at managing it. When I moved back to Edinburgh, it was difficult to explain to a whole bunch of people I didn’t know but as time went on they discovered it and supported me through it. My friends here are super lovely about warning me if they are ill so I can decide whether to ‘risk’ meeting with them as they know if I get ill…it can take me weeks to get better.
I’m lucky I never had to get a wheelchair. I was only confined to a bed for days at the time and I got respite from it. And I was able to keep working a few hours a week, and never had to take time off from uni. My grades suffered because I couldn’t go to every lecture and tutorial, but I still passed. And over a decade later, I’m rarely off work. I’m working full time for the first time in 10 years. I am discovering that my weekends usually require a lot of down time, but that’s ok.
I just hope more research goes into this. I hope better treatments are found. That there will be better support.
Hopefully this film will help with that.