For me, the hardest part of CFS/ME is accepting just how ill I am. I think part of the problem is due to the process of diagnosing the illness, you can’t just take a blood test and diagnose it straight away. It’s a process of eliminating everything else it could be, hence why it takes so long to diagnose. In my case my diagnosis took a year to get, which isn’t horrifically long compared to others, but it wasn’t until about 8/9 months down the line did I actually start to accept what was wrong. Every visit to the doctors just led to another possible reason for being ill that could be simply fixed, I guess that kept my hopes up that it wasn’t a more serious problem.
I’m not going to lie, it is hard being 21 and knowing I will probably never work a full time job – if I do it will probably involve flexible hours and working from home. Granted, it’s not as if I’ve seen myself as a 9-5 office girl but it would be nice to still have the option. Although I will get better from being as ill as I am, it is still an illness I will have for the rest of my life, I will have to constantly work at a routine that minimises flare ups as much as possible. There are lots of things you have to accept that don’t even cross your mind when you are healthy, like allowing extra time to get places in case I need to rest.
There’s other times when I just have to accept I will let people down like when I can’t make plans or I’m unable to do things I used to be able to. If I have a night out planned I know that will mean the next two days are a write off or at least a struggle. Sometimes I get so frustrated knowing I can’t do something, it feels like I’m losing my independence, but I have to just accept that I will have to ask people to help me. No one likes to think they can’t do something, its against your instincts.
Obviously it’s important to accept the restrictions of CFS/ME or else you tire yourself out more, but there’s more to it than that. It’s very hard to not get caught up searching for miracle cures that just don’t exist, I had to accept that this was my life now and I simply have to manage it as best as I can.
Its taken a while but I’m finally getting to a place where I can accept that CFS/ME will be a part of my life but it doesn’t have to ruin my life.
See you next time pals x