What a strange world we live in, where we have to beg and plead for treatment! I find it absolutely rediculous! So, as you may be aware, I am fast reaching my 2nd ampuversary. Yes, almost two years has passed since I opted to have my leg removed due to the amount of pain I was in. You also know, that I was unfortunately one of the unlucky ones where my crps returned. Yet I will never regret the decision I made. I could not live in that level of pain, and saw a possible cure, so took it! Now, I am still in the same situation… However this time it is slightly different, as half of the pain in my stumpey is caused by something yet to be investigated or diagnosed!
How do I know it is different? Anyone with CRPS will tell you that there is no mistaking the pain it caused. Burning doesn’t even cover it! Yet the other pain I have is completely different. It responds, albeit only slightly, to pain medicine, whereas the crps does not. It is the reason I cannot wear a prosthetic. To be fair I could only wear one for a short time because of the crps anyway, but when you can’t walk at all, a few minutes, half an hour, of walking is everything. It was recently suggested to me that perhaps the doctors are ignoring me because I complained about the treatment of the pain consultant in Exeter, and her accusing me of, and I quote ‘self mutilation’. To which the hospital tried to tell me that I was lying! This is despite having a witness to the conversation and a letter from her proving her, frankly, malpractice. Where, and I’m sure I’ve mentioned before, she planned my admission to hospital to administer a block 4 days prior to my amputation, and then did not turn up to give it! This, as I’ve been informed by a very experienced pain doctor, could have been the reason why my crps returned! So now because I spoke up, I am being blacklisted for treatment?! How on earth is this even possible, let alone moral! I have been an nurse for 20 years, if you include my training, and part of that training states that you treat everyone the same…there is no discrimination. Yet because I chose to speak up…. To say something about a Doctor who did something wrong, I am being neglected because of it! It is just disgusting!
I love the NHS, and have worked for them for half my life… Yet this situation is not just isolated to me. I have heard of other stories of similar discrimination….. Anyway, there may be some light at the end of this very long tunnel. Blesma, who are an amazing charity, have been trying to help, and get me the treatment I desperately need, have finally managed to transfer my care, or lack thereof, to Bristol. So I am now awaiting an appointment, with, hopefully someone who will help.
To be honest, being left to suffer like this has taken so much from me. I have had to take a learning break from college, because the pain has got so bad that I can’t concentrate. My exercise has gone down considerably, as I can’t stand the cold on my leg, and am having so much pain that I cannot move most days. I haven’t left my appartment for about 3 weeks now! Things are pretty rubbish, I don’t mind telling you. So to have no treatment in sight, is just disgusting, and soul destroying! So now to see some light, is just miraculous. However having two years of my life, destroyed because of speaking up against abhorrent behaviour, is just disgusting. We should not be silenced by mistreatment… Surely we should be aloud to speak out about bad treatment… I feel very lucky that I have Blesma in my corner.. I worry for those who do not have anyone.
Lexi's journey through life as an elective amputee for CRPS. 