Fri, 19 Jan 2018
In November/December 2016 my symptoms became a lot harder to manage. Predominantly my Chronic Back Pain which also caused a lot of leg pain. I was working a very physical full-time job. By the end of my working day, which could vary from 9.00am – 6.00pm to 9.00am – 10.00pm, I was unable to walk.
Since becoming ill, aged 9, I have used wheelchairs on and off. Mainly for long distances during days out or for really bad flare ups. After work I would come home barely making it from my car to the house, some days I had to ask my partner to pick me up from work as I was unable to move. Once I was home I was not fit for much, I would eat my dinner and head to bed. Forcing myself out of bed every day ready for another day of work, excruciating pain and fatigue; I was stuck in a vicious cycle.
Despite having the most supportive, kind and caring partner, there were still many things that needed my attention at home, including our weekly shops. James and I would head to our store of preference where I would use one of their wheelchairs. However, sometimes the walk from the car to the store was not even a consideration. This is where we would use my old wheelchair. A mainly plastic wheelchair, found on eBay I believe many years ago.
I am extremely grateful for this wheelchair, it has allowed me to do many things I otherwise wouldn’t have been able to do over the years. However, this wheelchair pulled to one side (often pulling me closer to the road), the footplates would swing out to the sides, which was extremely un-lady like (even for me and I’ve never been the most gracious person). It was difficult for anyone pushing me and self-propelling myself was beyond difficult.
Therefore during March 2017 after leaving my physically demanding job, I moved to another full-time desk based job. I also placed the order for my new purpose built wheelchair. This means that my wheelchair was made for me, measurements, choice of frame, style, colour, cushion etc. My wheelchair of choice was the Kuschall Ultralight (in purple – this was obviously very important!). I could not be more grateful for this wheelchair or to the person that gave me this wheelchair. Since April 2017 I have done many things I otherwise wouldn’t have been able to. Including the small amount of work I did before giving up work entirely, at least for the time being.
Opening myself up to the use of a wheelchair was a hard decision, however, it was a necessary decision. Without the use of my wheelchair I am housebound. I cannot walk further than from my house to my car and some days even that is not possible. My wheelchair allows me to do the things that most people take for granted.
I am only able to do those things with another person pushing my wheelchair. I never would have imagined needing a wheelchair as full-time as I do. I most definitely never would have guessed that I would be unable to self-propel a wheelchair due to such poor health.
My conditions, more specifically my Hypermobility Syndrome which causes dislocations and subluxations (partial dislocations) has worsened since receiving my wheelchair last April. This means that I am no longer able to self-propel my wheelchair due to extreme pain and partial dislocations.
In September 2017 I partially dislocated my shoulder for the first time. Unfortunately this was something I could tell was slowly approaching. I am still suffering with extreme pain and lack of movement and strength in this shoulder most days. It also affects my other shoulder too. Neither shoulder is particularly strong and I cannot maintain, and some days even do, the motion needed to self-propel a wheelchair. After several months of physiotherapy even the physiotherapist has given up and as of yesterday I was discharged from the service for my shoulder.
As well as causing pain and dislocations to my shoulders, self-propelling my wheelchair causes my fingers and thumbs to dislocate and/or sublux. This can be extremely painful and last anywhere from minutes to months. My fingers have been dislocating for several years now and last month I had a subluxed thumb. During a shopping trip with James I became quite frustrated that I was unable to manoeuvre myself or get to where I wanted to go. So I decided to try to self-propel a small amount whilst I was on an easy to move, flat surface. Unfortunately this caused another subluxation in my forefinger along with a lovely little lump, bruise and a lot of pain.
I like my independence. I always have. I hate being reliant on other people, I’m not sure I know many people who do. I would love the chance to be relatively “normal”. To be able to go out as and when I like, like most people let alone most 20 year olds. My chronic illnesses/disabilities mean I am no longer able to go out without the support of another person. I can’t just pop to a shop. I can’t go to get my haircut; I can’t go shopping for dinner. I am unable to go to the doctors exactly at the point I need to; I am unable to go and pick up my prescriptions or meet friends for coffee.
I want a little independence back in my life and I don’t feel as though I am asking too much. Most people are able to do the above, in fact they don’t even have to think about doing any of those things. They are just able to. I appreciate that ‘chronic life’ comes with many battles and there’s not much I don’t have to adapt to be ‘Holly friendly’.
However, when there is something out there that can allow me my independence back I hold onto hope that I can be at least a little more independent again.
This is where I introduce the Alber E-Fix 35. The E-Fix is a Power Assist Add On. This means that it can take my current manual wheelchair and convert it into a power wheelchair.
The E-Fix is made up of two motorised wheels that slot in place where my current wheels sit, a light weight lithium battery that sits under my seat and a detachable joystick that attaches to my arm rests.
Each part is detachable meaning I would be able to continue getting my wheelchair in and out of my car if I wish to go out. It also means that if I decided to be a little more adventurous with James one weekend we can detach the power wheels and put my regular wheels back on.
A full battery charge will go roughly 12 miles. If I were with friends or family and I wanted to preserve my battery for whatever reason all I would need to do is turn the centre of my wheels slightly (they’re quite sensitive) and my wheelchair will swap from power to manual mode.
The only down side I can see to the Alber E-Fix 35 is its price. It is the only thing of its kind currently and after a visit to my wheelchair specialists this piece of equipment will cost me £4,775.00.
Unfortunately I am not eligible for support from NHS Wheelchair Services and they do not offer this type of product or anything that would be suitable i.e. lightweight.
Therefore I have set up a funding page through Go Fund Me to raise the money I need for independence and my life back.
Through the amazing support of family, friends and the Chronic Illness/Disability Communities we have already raised £2,480.00 – we are almost half way!
So, if you are willing and able I ask if you can please donate and share my story with others. Housebound at 20 was not the life I ever imagined I would have. I am extremely grateful for every donation I get. As well as every like, comment and share about my story.
To anyone who has already donated, I will never be able to explain how grateful I am for your support and understanding. To those sharing my story thank you so much. I am so grateful, please keep doing what you’re doing!
Thank you all so much, you can donate and read more about my fundraising for the E-Fix here: https://www.gofundme.com/hollys-power-chair-funding
P.S. If you do share my posts be sure to tag me so I can say thank you!