Fighting a Loosing Battle?

BillieTheBot

So i'm not usually one to be sharing my life with people, and usually I find it very hard to open up, but I think things like this can be helpful as most of the time you find lots of people have been in the same boat or are still in the same boat. Which is kinda sad in a way as I wouldn't wish this upon anyone at all. Health in my life is a huge huge huge issue. I'm sick of hearing 'there's always something wrong with you' well in actual fact, yes, yes there is. I suffer with 2 diseases in my joints called Perthese disease and multiple epiphyseal displasia. My family is the only family in the world to have both of these diseases together, as perthese is only normally up until you're 12 and never with the MED as well. Because my condition is so rare, it's proving quite difficult to find anyone who knows what they are talking about/doing. I've had my first lot of surgery not long ago, and after recently going for my review, my surgeon has said i'm a lot worse than I was and that he expected these results as they weren't quite sure if it would work. The problem now is, that no on really knows what the next step is even though i've been given 3 months left walking. Truly devastating when sport was my life! I've also been diagnosed with hypermobility (which is cray with my joint conditions) and something called Fibromyalgia. This is proving to be getting harder to handle as it becomes worse by the day. Having been diagnosed with an Eating disorder at the age of 11 and then after getting better, being hospitalised again a year ago, it's taking it's toll on me again. I've just been referred back to outpatients as i'm really struggling, everything's just seemed to hit rock bottom!! I'm not one to accept help at all, and it's hard to get the help even if I did want it. I'm normally the one giving out all the help and advice, so it's kinda funny taking a back seat for a while and desperately being in need of a life sort out! all of this on top of no family, no home, etc...starts to take it's toll. But...I know I am sat here moaning and winging and being all negative, I also want to say that it's okay to be down about things like this, and there's always help available, even if it's just someone to listen. You have everyone on here and that's a start!! nothing used to ever be around like this when I was in desperate need in secondary school etc...so we're a winner already!! I'm always happy to chat to anyone else who's feeling crappy, there's light at the end of the tunnel I promise Thanks lots for people's help so far. Apologies for this huge essay, i feel better just for getting it off my chest!! Tc people x bubbley x

Former Member

Hi bubbleyberry

Welcome to The Site. I didn't have a chance to wave hello on your first thread. :wave:

It's clear from the things you've experienced that its been a tough ride for you recently. Your right though, being open and upfront about what you've gone through is a great start to tackling your difficulties.

Your conditions combined do sound quite rare and the troubles you've gone through with the medical profession must have added to the stress of your situation.

You seem to have a lot of insight into the things you've gone through though and that in itself must be reassuring for you.

Please keep posting. You've figured out already that were a friendly bunch and there'll always be someone here to listen.

Hugs *hug*

Phil :thumb: