When I first went to the doctor complaining of feeling excessively tired, 4½ years ago, initial tests revealed a B12 deficiency. All it would take would be a series of injections to get me back to normal then 3-monthly jabs for the rest of my life to ensure it wouldn’t happen again.
I wasn’t happy at the idea I would have to have these injections forever, but I was looking forward to having my energy back.
A year later nothing had changed. I was still easily exhausted after comparatively little exertion. After a series of tests failed to discover any reason for this I was given the label CFS – Chronic Fatigue Syndrome.
But this brought no comfort – all it really meant was I’d been given a label meaning “We accept you get fatigued easily but don’t know why.”
I was told some people get better, and some don’t. But there are things you can do, like graded exercise and cognitive behaviour therapy, which, while they won’t cure you, should help you to cope better.
I found this difficult to accept and insisted on seeing some kind of specialist. After several more months I saw one who thought it was probably just Depression. When being on anti-depressants made no difference to my fatigue he just shrugged his shoulders and said there was nothing more he could think of.
Still, I refused to accept the idea that no one knew what was wrong with me or could come up with any kind of solution. When something was spotted in a blood test that lead to the discovery I have haemochromatosis, I thought this could be it, but it turned out to just be a coincidental condition.
I pushed to have some kind of sleep study done, but after several months to get the appointment, 8 months more to get the results and 10 additional months to try out a CPAP machine for sleep apnoea, it was concluded that probably wasn’t the problem either.
Earlier this year I saw a different doctor and went through the standard blood tests again in case anything was missed first time round but the results were the same – apparently I’m perfectly healthy and they have no idea why I get so tired.
I even went through extreme diet changes for several months to rule out food intolerances, which made no difference whatsoever.
The CFS has not gone away on its own or with the help of the medical establishment. Finally, nearly 5 years later, I’m coming to the sinking conclusion that it’s not going to. All along, I've been clinging to the hope that this condition will pass sooner or later. But now I have to face the fact I’m highly unlikely to ever return to having the energy levels that would allow me to live in the way most other people do.
Maybe I need to let go and grieve for the loss of the life I thought I was going to have, and only once I’ve been through that process will I be able to properly move on with the life I actually have.