Firstly I would like to thank EDS Awareness Ireland for sharing my diagnosis story, over on their page this week as part of their awareness raising drive. I appreciate any awareness, especially of the lack of proper support in this country for care or any awareness of the condition itself is always welcome. These folks do a great job 🙂
So, Limbo Legs? Sounds like a funky dance right? Well, You could say that! :p
Lately, has been strange…
I currently cant walk independently… or, at all in fact. Even when I use crutches, all my weight is in my arms and I soon lose strength to hold myself up and the legs just crumple from under me.
There has been many a time before where my legs have been less than co-operative but I have managed to, ‘walk it out’ or recover to some degree where I get back to what you would consider normal. This feels different.
There is sharp deep pain in the joints, especially the right hip, knee and ankle. This leg was first to give me trouble. Then my left leg started to give trouble because I was over compensating with it to take pressure off the other leg!! In the end the pain became such that, when I stand, my joints crumple under my weight, *Fat Bitch! LOL! Ah no, seriously, it kinda strange not being able to stand up. It makes you miss it almost immediately!
Thankfully work is keeping me busy and distracted, I am still enjoying it, which is the main thing and it is something that I enjoy concentrating on. It keeps me from getting pissed off at the fact that I always have to ask for help with stuff and getting around.
Wednesday morning I have a doctors appointment to assess the situation further. I made a few phone calls to the rheumatologists secretaries in both hospitals. The public one and the private one. They both had me down as being, ‘routine’ on the public waiting list since April 2011 and could not give me a date, not even a guess as to when I might be called.
I simply cant afford to go private and I can only do so much as a public patient. I will see what the doc says Wednesday morning and go from there. When I rang the rheumatologists secretary, she told me to get an updated ‘urgent’ letter from my GP and to send it in. Only then will they be able to check my files and see if I am suitable to give an expedited appointment to!
Until then, I will stay seated in my office chair, where i can be wheeled from room to room!
it works, bitches! :p 😀