Help me get a wheelchair - I can't trust my body

Hiya!

Thank you so much for clicking on our story, coming even this far means alot!

We're Frankie (the human) and Caz (the medical alert assistance dog) we come as a team, before Caz I was house bound and more often than not bed bound for 12 years. She is the most important being in my life and I wouldn't be here without her

Caz alerts me to one of my disabilities - PoTS that causes me to lose consciousness without any warning, among other nasty symptoms. Caz is able to smell a change in my scent and give me a 3-5 minute window to get to the ground and hopefully avoid injury when I inevitably lose consciousness. She's incredible and I'm able to go outside my home now with the help of carers and when my body allows.

I have needed and been told to get a power chair now for the past 6 years but I've kept putting it off in the hopes something would miraculously change with different medications, trial and error studies, anything I saw online etc but the reality is my conditions are progressive and with the strain I put my body under by trying to walk on days I shouldn't and struggle through- I'm making things worse and shortening the time I have with a body I can sometimes use

The chair assessed to meet my needs is the Permobil M3. This chair costs £10,007 with the basic fixtures I need to keep me safe. No frills just the bare necessities.

Trust me when I say I was astonished that a piece of equipment that I cannot hope to live any life without and will eventually cause me to need surgery costs that amount, especially as I wrongfully assumed and always thought the NHS provided disabled people with the equipment they needed to live.

The NHS do not help ambulatory chair users (people that are not permanent wheelchair users) with powered equipment and one of my disabilities (EDS) means that trying to use a self propelled chair means my fingers and wrists dislocated or sublux (slip) - I tried and failed when I realised the pain caused trying to move the wheels was bruising me in minutes and I had to go to the hospital the first time I tried for a shoulder dislocation too.

When I have fainted I don't have the strength to stand back up as my arms and legs are basically jelly and so recently I was forced to sit in a puddle for 40 minutes until I could move my arms and legs again. You can see how if I had the powered wheelchair my dignity and actually my trousers may have been saved lol I would simply have fainted and come to in a perfect laying down position ready to take off again and get home to somewhere safe.

I have not had a pain free day for 16 years. My pain ranges from aching and throbbing to laying in a ball trying not to breathe so as not to move a muscle. I have no idea how bad the pain will be until it hits me, sometimes I'm the middle of a low pain day suddenly I cannot breathe without sever pain.

I lose consciousness on a daily basis and this ranges from maybe one or two little faints that I can recover from to fainting 60+ times a day and not being able to roll over in bed without triggering an episode. My legs are untrustworthy and they drop as and when they please meaning I fold and fall alot, my hips, knees and ankles all slip or sublux regularly and I have to walk on joints that aren't where they should be to make sure my little Caz gets the walks she deserves.

I hope that you can empathise with me I'm not looking for sympathy and I never thought I'd be here asking for help from friends, family and perfect strangers, I've come to terms with what life is and will be for me now, I've grieved the life I wanted and now I want to build a life I can be proud of against the odds. I hope that the information I'm sharing despite it sort of killing me inside can show you how this chair could help me build this new life.

This chair could change everything. Not only would the pain be better managed in that I won't be making things worse or harming myself any further pushing my body past its limits trying to stand or walk on feet that feel like shards of glass, this chair in particular 'faints' with me so it means the chair electronically lays back and supports my neck, back and legs while I am unconscious. It's hard to explain how incredible that is for me; having to lay on public floors wherever I am no matter how dirty or risk broken bones (I've had plenty) is not a choice I wish on anyone

After trialling the M3 chair for just a short few hours I've already dreamed up the life I want to build for Caz and I. The comfort and support of the chair meant holding my walking stick wasn't causing my fingers to pop out of their little sockets and I really realised that this was the first time in years I've felt free.

I hope some of what I've explained helps and you're more than welcome to check out mine and Caz' awareness page linked below for some more in-depth information on my health conditions, disabilities and ask me any questions you may have

Learn more about Frankie & Caz here

I've avoided this for so long as I struggle with asking for help as a very private person that was brought up to believe mind over matter would fix anything I really did think things might get better despite being told differently for the past 16 years, I really thought they'd find a cure. My disabilities are not curable and they just slowly get worse over time. Having this chair now could prevent me needing it permanently for many years to come.

If you're still here and reading this little essay I've concocted - Thank you! You are amazing and I appreciate you taking the time, If you'd like to donate then honestly I can't tell you in words what it will mean, however just know I will kiss Caz (she actually rests her head on me when she wants a forehead kiss - she lovesss them) grin from ear to ear and dream of a new little activity this chair will make possible.

If you cannot donate but want to help then I'm also using my artsy skills to put towards the chair too and you can order a personalised drawing here

Buy a personalised drawing here

If you're able to and want to help even more please share this as far and wide as you can, I know how tough times are right now so I know donating won't be possible for everyone but every little thing helps and the only way this page works is if people see it so please please share it

A very hopeful and excited

Frankie & Caz xxx