Please help me get a wheelchair
Donation protected
Hello!
Thank you for clicking on this and taking the time to read it if you have, I still struggle to come to terms and accept my poor health and mobility so I find it really difficult to be open and talk about it. I hate having to share this with others and even more so I hate having to ask for help, so I appreciate anyone who can help or take the time to even read this. In a way I want to show that it’s okay to ask for help even though it makes us feel vulnerable.
Firstly, a bit about me. My name is Phoenix, I’m 27, I was born in southeast London and moved to Kent when I was younger. I was born really premature and breach. The reasons for my health are part genetic and some are unknown, it may possibly be due to me being so small and in the position I was in.
I have Ehlers Danlos Syndrome (a chronic connective tissue disorder that affects the joint stability as well as other things) as well as other deformities in my legs. I have Femeral antiversion, Tibial Torsion and Flat Feet (excuse the medical waffle). In short, the bones of my legs bow and rotate in places they shouldn’t and the arches of my feet sit on the floor. This has caused me pain since I was little and it’s become chronic as I’ve gotten older. Along with Plantar Faciitis, Cervicaligia, degeneration to the discs in my neck, back pain and more. I’m in constant chronic pain and my stability, mobility and ability to stand has declined horrendously. Which in turn has made other health problems present or worsen like diabetes, weight gain, severe sleep apnea, high blood pressure, depression, anxiety and so many other things. I feel hopeless and like I’ve lost my life.
Anyone in the same situation or if you know anyone who’s been through a battle with their health knows how lonely, isolating and vulnerable it can be. People stop wanting to know you because you can’t always do the same things as you used to and most of the time you don’t have the energy or you’re in too much pain to cope.
Now, I know it is possible for so many disabled individuals to have independence and achieve the same as anyone else with additional help and support which I’ve desperately been trying to get. I know the main thing that would give me a little bit of independence would be to get a wheelchair. Which brings me to my last point - wheelchair services….
Wheelchair services, especially in my area are horrendous. Before going to them I had heard so many horror stories of how bad they were but I remained optimistic and that was my biggest regret.
I had my first appointment and the practitioner I saw was so rude. He wouldn’t answer any of my questions, he didn’t ask me a single question and just wheeled in a manual chair for me to sit in.
Due to the joints in my arms, wrists and hands being unstable and they pop out of place/semi-dislocate a lot, I was unable to propel myself. Even when getting visibly upset during the appointment because I couldn’t do it, he just sat in silence and glared at me. I kept saying I don’t know what to do and he just scoffed eventually and said that all the chairs will be the same most likely and that I’m too overweight for anything “decent” so anyone with a bariatric chair will need someone to push them. So the questionnaire I was made to fill out about how independence is so important to me might as well of gone in the bin.
I explained that my GP who referred me said I need a motorised wheelchair and he just said I can take the manual one or nothing. I asked for advice for the voucher scheme and asked for the leaflet that I was supposed to have sent to me to be told a simple “no.”
I contacted them again and argued this over the course of months; how no questions were asked and stating my medical conditions and how they affect me. He told me he would contact the GP to confirm what I said was true (even though it was on the referal forms)… at last I felt I was getting somewhere. He lied. He secretly called the GP and didn’t ask to confirm anything, rather he called just to tell them I was being discharged behind my back.
I have been going backwards and forwards with more referrals and wheelchair services agree I need a motorised chair however what they can offer is not suitable for me or at all for where I live. To get one that I need that is motorised and foldable I would have to purchase this myself, so I’ve found the cheapest and best reviewed one for my situation that I can find.
The only way I will be able to get what I need is by purchasing a motorised wheelchair privately. I have done a lot of research and found a model that would be perfect for me and has really good reviews. I have got a secondhand mobility scooter that barely works, I’ve had the batteries changed and repairs done to it but I can’t go out independently on it as it barely works and I can’t transport it. It’s will cost more than I can afford to keep it barely running due to its health. It’s no longer just a case of renewing the batteries as it’s so old and used, unsuitable and unreliable.
I hate having to share all this and ask for help but if anyone could donate anything to the fund, from the bottom of my heart I really appreciate it so, so much. And even if you can’t, please know that just getting through all my waffle and reading this is deeply appreciated too - just having someone taking the time to read my story makes me feel valued.
Again, thank you so much
Wheelchair information
-NEW MobilityPlus+ RangerXL Lightweight Electric Wheelchair | 160kg Load, 4mph
Organizer
Phoenix Turnbull
Organizer
England