I’ve often said how grateful I am to have access to AFO leg splints. They have given me the level of physical support and freedom that I am very happy with. Since I began wearing them at age 11 they have become a part of my life, an aspect of my world which I am wholly reliant on. So what happens when things go wrong with my leg splints?
This is the current battle I am facing right now. Throughout my AFO history I have only had three or four pairs of splints and only pair one at any given time. Could you imagine having only four pairs of shoes spanning across ten years? I wear them every day so naturally wear and tear is bound to happen, but unfortunately there is no way for me to prepare for a breakage, as the hospital doesn’t offer replacements of particular parts or quick fixes. They only allow me to get a new pair when they deem it necessary.
So what is the protocol for when my leg splints break? I have literally no support from the hospital or my GP. It’s actually so bad at my GP surgery that I have to explain what my condition is every time I visit. My latest visit was this Tuesday regarding my broken leg braces. I had returned because nothing had happened from the previous referral to the orthopedics department that I had asked my GP to make two weeks prior, because I need my GP to refer me to the splint people because it has been so long since my previous appointment with patient appliances (splint people). It’s as if I am no longer on their list of patients. (I hope this makes sense, it’s all unnecessarily complicated) So I arrived for my 9am appointment with Dr… (let’s call him Dr Dave). In fact, I was ten minutes early. I waited in the waiting room until 9:05 when the receptionist called me over. She said “Haven’t you been checking your phone?” confused I looked down and noticed one missed call at 8:10am. “We have been calling and texting you none stop.” Rude. I replied “Well I have one missed call at 8 but nothing else.” She said Dr Dave wasn’t in and I could either wait for Dr Sally (We’ll call her Dr Sally) for a 9:30am appointment or rearrange with Dr Dave. I decided to wait for Dr Sally despite never meeting her before as I am very desperate to get my leg splints replaced. 9:30am rolls around and I head to Dr Sally’s room. I explain to her my AFO disaster and how they are intrinsic to my daily functioning. To which she says “I haven’t read your notes, what is it you use them for?” Great. Then she asked where they were broken (Not quite sure why she did this, perhaps to try and make the appointment seem more worthwhile) So I showed her the rips and the DIY staples that I’ve been donning to try and keep them together. The appointment ended with her saying that she will fax a referral over to orthopedics and if I don’t hear back in a weeks time, I must contact them directly. I asked her for a phone number and she said “just call the hospital switch board.” Lovely bit of effort made by her. Safe to say I was very disappointed by this visit.
In truth I feel abandoned by the hospital. I feel that there is a total lack of interest and support. Staring at my splints as I write this is making me feel slightly upset. The velcro straps I have replaced almost daily need replacing again. The staples I have used to keep one of the upper straps from coming apart jut out unnaturally, making my braces look more like a torture device rather than a walking aid.
If you know me personally you know that there are some exciting developments happening in my life. I am starting an internship which will be part of a year in industry placement at university. It is a PR and communications internship and I am very excited to start this coming Tuesday. It is a full time position. However, I feel like this excitement is now tinged with an anxiety that my broken leg braces will hinder me in my new work place. Something that could so simply be replaced or fixed has a huge impact on my quality of life. During my holiday I couldn’t get up and dance of an evening out of fear of damaging them further. I’m actually scared of going out shopping incase they snap.
Hopefully my AFO crisis will be over soon and I can return to being my outgoing self. I look forward to my AFOS returning to the status of being my helpers instead of a source of anxiety.
Thank you for reading this relatively negative post. I think it’s important to talk about the realities of life with CMT. Plus it’s actually therapeutic for me to get my worries out of my system.
I am going to try and upload some perkier content soon. Thank you for reading. Xoxo