Since my previous post many of you have offered me a great deal of support and kindness which I am so grateful for. It’s easy to feel isolated and alone when you are struggling with a mobility issue, as it’s your own personal burden to bare. Support can make that weight feel a little lighter. Thank you to everyone who has taken an interest and offered me kindness.
So a week ago I shared with you the current difficulty that I am facing with my leg braces. I have been feeling really anxious knowing they would snap at any moment. Yesterday when my leg splint finally did say adios as I was leaving my new job, I had two feelings. The first was panic. “How will I get home? How will I get to work on Monday? How am I going to function?” The other feeling was oddly relief. I had been expecting this for a while now. I had made the referral weeksin advance knowing that my splints were reaching their end. I had spent weeks constantly checking for more rips, constantly putting staples in and always undoing my strap whenever I could. Now that the strap has finally gave way I don’t have to do this anymore. It’s like waiting for something bad to happen and once it happens you can deal with it and move forward.
I hobbled back to my building with my leg splint slapping against my leg now that it was unsecured. Two of my new lovely coworkers helped me tape myself up with packaging tape, surprisingly this worked moderately well although it feels quite strange and doesn’t look too fantastic. One of my new work friends dropped me off at my mums work and rescued me.
My appointment with the splint people is the 3rdof October. I had asked to be somehow fast tracked because it’s an urgent situation and the receptionist said the best she can do is put me on a cancellation list. She told me since they haven’t seen me since 2016 that I have to have an appointment slot of an hour since I have to be rereviewed meaning that they have to measure me again and make sure they work for me etc. They do this by creating a mould of my legs and then this mould gets sent off to the mysterious splint making factory, so it can be properly custom made. Then I’ll wait another couple of weeks for the splints to arrive.
I’ve looked into ordering splints privately but I get the impression that the ones I come across online are simplistic. Some don’t have straps, which is the issue I have at the moment. Some do not cater for foot drop or ankle support. Many only come in small, medium or large which is not helpful to me as my muscles are too skinny to fit into any of these. Some even come in regular shoe sizes which also doesn’t work for me. It’s difficult because although I have researched a lot about my condition, I don’t quite know which parts of my braces are a necessity and which aren’t. For example I know that I need it to cater to my foot drop, meaning that it has to keep my foot in a 90 degree angle. I know that I need total ankle support, but do they need to be so bulky? Do they need to be made out of plastic which gets too hot in summer? I’ve seen people on CMT UK with carbon fibre ones, and I know everyone’s needs are different but what if I could be getting a better pair of leg braces?
So what’s my plan? Well I don’t have too many options. I am going to tape my brace every day as I can’t just stop my life. It isn’t ideal, but I simply can’t put my life on pause for a month until this appointment. I know many of you are outraged by this. I am currently searching through the internet for ones that will do for now but honestly taping my leg might be the better option as at least then the brace actually fits me rather than spending over £50 on something that could potentially be more harmful. I am thinking of going to the hospital this coming Monday to show them how urgent it is and maybe I will get a response.
Wish me luck on my search for temporary braces. I will keep you all updated. My sister bought me a lovely orchid to cheer me up so I’m going to put it on my desk at my new job, as a reminder to stay positive and use this bad experience as an opportunity to grow.
Thank you for reading xoxo