The other day a letter dropped through my letterbox and while most would consider this to be a good thing it had me shaking. I could recognise the paper through the window and I knew what the contents held. It was my next hospital appointment. It’s the one where I find out the results of my MRI scan that I had at the start of the month. It’s where I find out if I have a disability and what I’ve been affectionately referring to as naming the monster that’s hiding under the bed. In TV this is where there would be a fancy voiceover and montage saying “previously on From Fiona” but this isn’t a TV show and I’ve been incredibly lax in sharing some of my personal problems on my blog. I think I got sucked into the idea that I can’t share the issues that I’m going through when in fact the opposite is true. I should be sharing everything or at least everything I’m prepared to put online.
For the past couple of years I’ve been having issues with my body. They were little niggles to start with and things that I thought could potentially be a bi-product of my hysterectomy. That’s a huge procedure for a body to endure so it’s wasn’t such a huge leap for me. Then the pain in my hands started while I was in my final year at uni. I hand wrote all my uni notes until the last 12 weeks of my degree. I went from writing for over 6 hours a day to barely being able to hold a pen for more than 10 minutes. I have a genetic deformity in one of my fingers which is a result of a relative in the bloodline with Rheumatoid Arthritis so it seemed logical that maybe that was what was causing my problems. I had the blood tests and x-rays and other than the issue with one finger everything was fine.
I finished my degree, graduated and didn’t think anymore of it but then my symptoms started getting worse.
I started my job in currency exchange at the start of July and while I was doing short shifts my hands were fine. Once I started doing longer shifts my hands were getting worse and I even resorted to wearing fingerless gloves just so that I could get my job done. About this time is when the other issues started. My left knee which had always been particularly painful decided that popping in and out of place was a great idea and this has left me unable to walk on occasion. I also noticed that in certain situations my lower limbs felt heavier than they normally did. Couple this with the feeling of liquid trickling down my spine and I was back at the doctor pronto.
They established that I have nerve pain and that classic painkillers wouldn’t be the way forward. I tried doubling my regular dose of Amitriptyline which worked but made me make the stupidest mistakes at work which when working with money is never a good thing. I was then put on Gabapentin which didn’t really do much for me and actually kept me awake which for an ex-insomniac was a real pain. Then in November I was started on a low dose of Pregabalin and when I say low I mean low. It worked for a while but wasn’t really getting me through a working day.
At the start of December I saw the Neurologist who did some tests and decided I need to have an MRI to try and get more answers. I asked at this appointment about increasing the dose of Pregabalin and was told this was fine but it would need to be in stages managed by my GP. Cue my Gp telling me I was becoming addicted to it (it’s becoming a class C drug). I went to a different GP who has upped my dose and this seems to be working. Or it was until that damn letter dropped through the door.
So now we’re all up to date and I have four weeks to prepare myself to name the monster under the bed. I’m not sure I’m ready to potentially say that I have a disability. The term chronically ill feels better at least until I find out what the next steps are. My brain is working overtime with what the possibilities are (I’m fully aware of one of them) but I felt the need to get the words out before this issue consumed me.
On the subject of disability, I was asked to watch three videos in a series called Identities* and how they make me feel about being labelled with having a disability. By hearing other people vocalise how they feel about disability and the labels that are associated with it, I feel that I might finally be able to answer the question which is the title of the post. Umber’s story was the one I identified with most as I’ve yet to come to terms with what it is to be labelled as disabled and accept that will be good and bad days for my body.
Am I ready to be labelled as having a disability? The answer is a resounding no. I’m definitely not ready but I’ll accept whatever I’m presented with and deal with it then. No, I’m not sticking my head in the sand, I’m just not worrying to much about something that I can’t control right now. Just cross your fingers that my GP re-precribes my Pregabalin when I run out.
Do you have a disability journey you would like to share with me?
Disclaimer: Yes, this post has a sponsored element but all views and opinions are my own.