The NHS merry go round! Better to be on it that off of it though! So, today was the big day in Bristol. The obligatory readiness of the meds and stuff for the journey, began the day. It took a respectable hour and a half to get there, a nice easy drive along the motorway. I was somewhat perplexed by the referral being to the prosthetics centre, but I was just rather happy to be seen by someone. We arrived at the freezing cold centre, and waited. After a while a lovely lady came out…she was a councellor. She showed us into the room with the new consultant! He also seemed nice, but rather out of his depth. After an hour of questions, and going round and round in circles, I felt like we were getting nowhere. It’s like no one can see through the crps. He looked at my leg, and marveled at its shiny, mottled, hairless effect! Turning to the councellor and talking her through the obvious signs of CRPS. Thanks to her, she pointed out the left side, and how it was bulbous and white, and obviously different to the other side. Eventually she chipped in and asked why he couldn’t refer me for an MRI, instead of sending me back to Exeter again… Back to those who have ignored me for the past two years! He eventually conceded that they could refer me for an MRI. He kept asking why we would want to drive so far for treatment, when we have Exeter there… I kept trying to explain, that they are not giving me treatment. My poor go has referred me so many times, and yet…nothing! I told him that I felt completely neglected, and deviated by the sheer ignorance.
So, they have now referred me for an MRI. We are hoping it will come through soon, but I was referred for one in November, and am yet to hear anything. He said to take the first one!! I left the appointment hopeful, but I so wish they would listen. He said that all of us CRPS patients are basically experts in our own condition. If that is what they really think, then surely they should listen when I tell them that the left side of my leg feels different to crps. Yet it all seems to fall on deaf ears! What have I got to do to be heard? To get a diagnosis…and treatment? They basically expect me to just live with it, and not ask for help. I have a chance at walking again, at least some of the time…. Why wouldn’t I fight for that? I can’t live confined to a wheelchair when I know there is hope that I may not need to be…..
Where is the lottery when you need it? I used to daydream that if I won I would design and build my own house. Now I dream of paying for someone to look at my leg and sort it out so that I can walk again. This is not something I should have to dream about, it is possible. I wore a prosthetic before, and could again, and all that is in my way is this other issue! So, I will await the MRI, and cross all fingers and remaining toes that it comes soon.