Last week, I started a new chapter in my life. One to keep that Frontal Lobe in check. I started at college (again). This time ive decided to redo some of my GCSE’s and do a few new ones. I absolutely love learning, and whilst I still cant go back to work, and probably cant for some time, its great to be learning again. As a Registered Nurse, you are learning all of the time, so this is part of my job which I miss the most. Its been 17 months since I was last at work. My art work does keep me occupied, but its not massively brain taxing. So although ive been to university with the qualifications which I have, I decided to challenge myself with improving my grades in Maths and English, and completing new GCSEs in Chemistry, Physics, Biology, and Human Biology. Its alot, but im loving it!
So, what is all of this for? Well, I have to be realistic and prepare for the fact that there is a chance that I may not be able to go back to being a Registered Nurse. I hope that I can, but there seems alot standing in my way at the moment. Mainly pain and mobility issues.
So when it comes to training. Im still hitting the gym 4 times per week. Working on strength and endurance as best I can. I cant use my chair much at all as I still have the old one which has given me recurrant Tendonitis. So I am doing the best I can until my new one arrives.
As for my prosthetic. Well, all i can say is that its a nightmare. Try wearing 6-7 fluffy sports socks, and a thick rubber like liner and a thick plastic socket….all summer. Ive been back to my mobility center 3 times now, practically begging to be recasted for a new socket and each time my current one gets filled with more stuff. So I now have a massively baggy leg that hurts my knee, that im wearing 7 socks with, that has made my mobility reduce so much. It hurts to wear it more than it did before. So I try not to, but I cant use my chair because that hurts my shoulders and agrivates the Tendonitis due to the poor set up of the chair. So sometimes I just shuffle around my apoartment on my hands and knees! ( what a picture!!)
I had an encounter at the mobility centre on Friday which left me feeling so stressed and demorolised. My old physio came into my session with my new lovely physio to basically have a go at me. He claimed that when I had my wheelchair assessment, I told the people that I cant wear my leg at all. Now, my wife was with me at this meeting, and at no time did I ever say that. I told them why I need an active wheelchair. Because im an active person. Because my current one has left me with injuries. Because I live in a 1st floor appartment with no lift, and so unless someone takes my chair outside for me, I am basically house bound. Im due to start my driving lessons soon, and need to have a chair which I can get in and out of the car myself. When my crps is bad, I cant wear my leg at all. But the rest of the time I do my best. It always hurts. It always causes alot of pain, but im not one to give in. To be honest, id be much better off in my chair permenantly. Id have less pain, and all the associated things with it (like sleep deprivation etc) would be better. But i want to do the best i can. Walk whilst i can. I cant walk far, or for long. A few metres. I have to use a stick or crutches as well, but im upright. Which is amazing. So the fact that this chap felt the need to come to me to say id said something which I diddnt say, and my wife is a good witness, I find disgusting. I tried to tell him, but he didnt listen. He basically tried to call me a liar, then went on to say that he had faught for me, and id still be getting my chair! So not only is he calling me a liar, he makes himself the hero in the same sentance! Cat thinks that the student who was taking the minutes for the wheelchair meeting probably tried to simplify them and it ended up with a poor account of what was actually said. I think this is a strong possibility. But the fact that my old physio has known me from the start and knows I have crps, and yet still questions why one day i wear my leg and the next i cant, is disgusting!
I have another appointment on Thursday. With my prosthetist. To beg again for a new socket. Im not hopeful. Its like the whole system is set up for you to fail. I need a new socket. The one I have is huge. Its painful. I have to wear tons of socks. I cant wear any clothes with it because its so wide….. So im keeping all of my fingers and remaining toes crossed.
In other parts of the country, you get recasted when your up to 3 socks!!!
I cant wait for these things to be sorted. For all of this waiting to end. This is the 1st time that I have been upset about having my amputation. Even finding out the crps is back, as easier to take than the endless appointments with completely demorolising outcomes!
Anyway, I will try my best to keep positive. I have alot of great things going on and alot to look forward too. I also know that im not the 1st person or the last to have struggled to get help with mobility.
So on a lighter note…. heres my little boy, Winkeypoo. Having recovered from yet another bout of Pancreatitis. He is such a little trooper. He keeps me company, and sane (well, sort of), if you call talking to a cat, and insisting that he answers you, sane?
Lexi's journey through life as an elective amputee for CRPS. 