When I was diagnosed the consultant talked about the possibility of being in a wheelchair in 10 years, I saw this as a challenge, something to beat; maybe Keith’s personality is rubbing off, as I am normally the most non-competitive person around! I was not going to be disabled by using a wheelchair. I saw it as the end of my career, my life as Pippa, a wife and most importantly a Mummy! I had dreams, like we all do, about my future and this condition was stealing it. The thought of a wheelchair became my enemy, my worst nightmare.
Splints and aids have been part of my life, even before my formal diagnoses. I have been on and off of crutches since I was 10 years old and I have always seen them as a way of enabling me to continue my life the way I wanted to live it, they were a short term aid. As the years have gone on I have since accepted that finger splints have enabled me to use my hands and reduce the pain, but before I wore my snazzy silver splints (by Zomile) I found the NHS plastic ones made me feel disabled. Silly I know, they still prevented dislocations and reduced pain, but they looked like an aid. I got my silver splints a couple of years ago now and I never looked back. People often comment on my jewellery and then I can educate them about their use.
A couple of years ago, after a car accident where both my hips partially dislocated leaving me in excruciating pain I began to use my crutches permanently, I had always intended to get off them again, but I then had a further fall and realised that the damage I was causing upon falling was getting worse and I wasn’t simply bouncing back. Unfortunately my wrists, elbows and shoulders did not like me using crutches all the time and would dislocate daily causing further falls. Suddenly my crutches disabled me again. I bought PURPLE Smart Crutches which support my forearm and since then my arm dislocations have reduced massively. These crutches made me feel good, I liked the look, the feel, they enabled me to continue walking in style! I intend to bling them up, following meeting someone in Whitley a little while ago, who had the same condition and used the same crutches. If I have to use aids, lets make them more ‘me’!
My condition has definitely continued to deteriorate over the years and I now find extended walking painful and I am disabled by my condition. I can’t enjoy days out with my family, I have to watch, pace, miss out. A day out is controlled by pain and the following days are horrific with pain levels through the roof and missing works days or more importantly family time! I have always seen the idea of a wheelchair as a life sentence, the end of my fight, but my Sister in Law said something to me a few months ago that has stuck in my head – “A wheelchair will enable you and not disable you!”
I was not convinced, but through continued support from Keith and the realisation that Isabella was missing out on Mummy time every time I overdid it, I began to think more about the possibility of a wheelchair. I wouldn’t need it all the time, I am fine on my crutches most of the time, but possibly it would allow me to be part of family time on my bad days, or allow me to be part of fun days out without paying such a big price.
This weekend Keith supported me through one of the biggest mental challenges so far, we went to Ableworld to look at wheelchairs. I entered the shop and felt overwhelmed, was this the right thing to do? I had to keep telling myself this will enable me not disable me – I am not sure I believed it. We were helped by a very supportive member of staff who took the time to talk through my options and didn’t rush me as I sat in every wheelchair. I am sure my face was probably more expressive than I wanted it to be as I looked at these metal contraptions that symbolised how unwell I truly am. Finally I tried out colourful framed wheelchairs and started to relax – If i am going to do this, I will do it my way!! We left the shop with a wheelchair (white and blue), I have plans to make it more me; custom wheel hubs, coloured grips and possibly a bit of glitter somewhere there too!!
I know this will enable me to continue to enjoy family time and actually start to pace myself, I have the wheelchair to enable me to live. It isn’t permanent, it isn’t the beginning of the end. If anything it will increase the time before I have to use one permanently. It is going to take time to get used to it, I now need to work slowly on strengthening my arms and possibly more importantly trusting Keith to push me about!!
So, next time you see me I may be walking using one crutch, two crutches or maybe whizzing about in my wheelchair – that’s the joys of a condition that affects me differently everyday! But more on that next time.