My experience with CFS

I developed CFS when I was 13 years old after having glandular fever. Before getting a diagnosis my symptoms were put down to multiple different things-my period, anemia, celiac disease, dairy intolerance.. it was stress that I didn’t need on top of my exhaustion. When my GP finally diagnosed me with CFS, she referred me to a pediatrician. There wasn’t much they could do because chronic fatigue doesn’t have a ‘cure’. I was given sleeping medication to try and regulate my sleeping pattern, biweekly vitamin injections and referred to a OT. I started using graded activity which means you increase your activity gradually so your body has time to adjust. I found it really difficult because when I had a ‘good’ day and felt like I could do slightly more, I would. But then I’d suffer the next few days and be even more exhausted than usual because I’d done too much. It was a vicious circle. CFS was made worse for me by the fact that I was also unwell mentally. My first suicide attempt made things a lot worse. At that point I was still attending school part time but my attendance dropped afterwards until I wasn’t going at all. I lost contact with all my friends, because who wants to be friends with the crazy girl who can’t get out of bed? My OT then went on maternity leave and although I was happy for her, I was sad because this was yet another change. At this point I was doing coursework from home (my school had allowed me to only take maths and English language GCSE and BTEC health and social care) and my new OT was helping with coping techniques. I managed to get through my exams and came out with 4 C grade GCSE’s. I was pleased that school was over but at the same time, I was scared. Where was my life going? I had no friends and I wasn’t healthy enough to go to college or sixth form. My mental health was deteriorating quickly and I started to isolate myself more than ever. I turned 16 that June and because I was too old to carry on seeing my pediatrician, I was referred to a CFS specialist for adults. As with my previous consultant, there wasn’t much he could do other than advice me to keep taking melatonin. The months to come are a blur. I spent almost everyday in bed, too exhausted to get up and too tired to care. I stopped eating because that was the only aspect of my life that I could control. I hated myself and everything about my life. What was the point in my being alive when I wasn’t living? In June 2013, I became an inpatient and during my 10 months in hospital my CFS appeared to have gotten better. Now as an 18 year old, unfortunately over last month or so, I’m aware that I’ve most likely had a relapse. Things aren’t as bad as they used to be, because this time I have people to support me and people I can be honest with but I’m struggling more and more with everyday things. I’ve got an appointment next month with my consultant which will hopefully help the situation. I’m don’t know if I’ll ever ‘recover’ from chronic fatigue. I knew that it was very likely that I’d have another relapse but in the back of my mind there was always that bit of hope that maybe I could ‘beat it’. Hopefully one day I can say that I did.

13 things I’d tell my 13 year old self

  1. Leave your eyebrows alone!
  2. He won’t matter in a year’s time
  3. Don’t be afraid to show your intelligence
  4. Make more of an effort with your family, they won’t always be there and when they’re gone you’ll regret it
  5. You don’t need to act out to get the attention of others
  6. Don’t let them influence you to drink
  7. Eat breakfast and lunch
  8. Your style is YOUR style so wear whatever you want to wear
  9. Time isn’t going to magically speed by so stop wishing it would and live in the now!
  10. Stop comparing yourself to the other girls because you are all unique
  11. Your mum isn’t the enemy so don’t treat her like she is
  12. Start reading. In a few years it’ll be the thing that helps you escape
  13. Your health comes before your education and it always will