|Couldn't be bothered to find jods so that's just a nice blue sock.|
I was diagnosed with ME when I was 17. I couldn’t stay awake for more than a few hours at a time, I was seriously underweight because I’d given up on eating, I was dangerously sick and I was desperately unhappy. At the time, I was trying to finish my A Levels and to get into Cambridge, but I couldn’t do five lessons in a row or five days at school a week. I stopped everything I enjoyed (mainly athletics and huge amounts of music). Instead, my days were full of three things: school work, hospital/therapy, and sleep. School were pretty good about it. They helped me through hospital admissions. They arranged for me to miss lessons and to have somewhere quiet to lie down and sleep at school. They agreed to cut down the number of days I was in school each week. I dropped a subject (Russian). I did what homework I could manage and prioritised coursework. I was already doing exams separately with extra time because of my wrists being hopeless (EDS) but they also agreed to do things like changing the order of two three-hour exams on one day so that I could sit the more important French exam in the morning and General Studies in the afternoon.
|This was Chav Day. I forget now why we had Chav Day.|
I was severely depressed, and was diagnosed with bipolar disorder. In an attempt to control the dangerous sides of bipolar, I was on heavy medication which exacerbated the exhaustion and hopelessness. In between my AS Levels and my A Levels I had two stays in a psychiatric hospital and underwent treatment at another clinic in London for a week. It's hard to reconcile the fervour of my Cambridge goal with my inability at the time to contemplate my continued existence into the next week. Looking back, it’s easy to imagine how I was feeling: angry that my friends were doing fun things that 17-year-olds do and I was getting home at 4pm, watching kids’ TV in an attempt to stay awake long enough to eat tea at a normal time, then heading to bed at about 7.30pm; frustrated that I could barely walk into another room without collapsing; fear of the future; and so on. To be honest, although these things did bother me, I mostly felt a huge emptiness: I was so tired, so miserable and so desperate that any strong emotion was too much to cope with. It takes a lot of energy to be angry, frustrated, or fearful. In difficult situations where you don’t have the energy for emotion, you just feel detached from everyone and everything around you. Apathy is possibly the closest word to describe it, but even that fails to do justice to the extent to which ‘normal’ emotions are alien to you - it's not that you don't feel the way others do, but that you don't feel anything at all. Despite the best efforts of my body and my mind conspiring together, I did get into Cambridge and I did get the grades.
|Pale, thin and tired but wearing the gown in Old Court!|
|I even had some energy to enjoy Freshers' Week, and eventually I put some weight on!|
These days I have finally learned a lot more about pacing, but I still overdo it sometimes. One of the hallmarks of ME fatigue is the ‘boom and bust’ pattern - whereby you feel pretty good one day, so do too much, but don’t realise it was too much until the next day or two, when it suddenly catches up with you.
|Nobody wants to see a picture of me sleeping, so here's one of Rosie with her squeaky toy hamburger instead.|
Chronic fatigue is difficult symptom to live with. It’s unpredictable, which makes it hard for you to hold down a job or to just to keep engagements with friends. I tend to avoid arranging things because I’m always aware that I might have to back out at the last minute, and since I’d rather not do that it’s easier not to commit in the first place. Chronic fatigue takes away from your life without giving anything positive in return. It stole a good part of my adolescence and early adulthood. It is ever-present and dominates my current plans. I am definitely a high-functioning ME sufferer, to the extent that I would consider my ME to be in remission - after all, I can do half-marathons, so things can’t be that bad! The problem is, though, that ME never fully leaves you. It’s always there to remind you when you’ve done too much.
These days, I CAN get out and about. I’ve adapted my life a lot and it’s nothing like I thought it would be, but I can do things and achieve things. I can have meaningful relationships and I can work towards goals. My ME was very bad, but I’m enormously lucky that it has improved this much.
The shoes I am sharing below are my vaulting shoes, because:
- I would never have started vaulting if it hadn’t been for the RDA, and ME is part of what led me to the RDA.
- Two days after wearing these shoes and becoming a national champion, I am crippled by the remnants of my ME.
- What I have achieved this year in vaulting I would never have thought possible even this time last year. In those years where I really suffered, I didn’t think I’d even still be alive by now - and nor did I want to be. My vaulting shoes represent a lot of fun, hard work and achievement.
I have one foot in and one foot out. It’s not an easy way to live, but it’s the best I can hope for. I just hope that I can keep it that way.