Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things?
Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already. First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous. I don’t mean to feel sorry for myself, but I’m still learning so much about this condition. I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works.
Then back to the wheelchair. I bought this chair in July. Well, when I say I did – actually some members of my family clubbed together to buy it for me, but we made the error of buying it from Betterlife Healthcare – a company we now know to have appalling customer service, questionable ethics, and a very much ‘we don’t care your wheelchair is a pile of crap’ attitude.
It’s brilliant to have a chair that jams on everything going, let me tell you. I particularly loved in when my chair stuck fast on the flat ground when coming out of a church, with 200 wedding guests behind me. Or when my mum tried to unjam the chair in a shop, and the footplate came free so quickly she fell on the floor and her arms and legs were covered in bruises. Or when I left work the other day to pop to a shop and it jammed on a flat pavement – and an 85 year old in a wheelchair, with an oxygen tube, had to stop and help me!
And yes, we’ve complained. Their attitude can be summed up with ‘haha, we have your money, now go away.’ I don’t actually want a refund, I want a replacement – because a refund will leave me without a goddamn chair, and it was so incredibly hard to find a chair that met my requirements in the first place (and I promise it was basic needs, not ‘it must be glittery pink’.) I have searched for a new chair, but the next type that meets the standard of being light enough to lift into a car and foldable seems to jump up by about £4000.
Then I found this charity called Action for Kids, which despite its title is meant to offer help getting a wheelchair for up to 26 year olds. I contacted them months ago, and was promised a visit which has yet to occur, despite constantly chasing them. When I phoned to find out their requirements they seemed very confused, and they gave me an extensive medical form to fill in – of which listed only very specific conditions and total paralysis were mentioned, which is very confusing because people with those conditions would qualify for a wheelchair from the NHS as they would be totally unable to walk.
Oh yes, did you know the NHS has a wheelchair service? When I first was referred for chair a few years ago their policy for an electric wheelchair was that you had to use it indoors and out. As I lived in a postage stamp house I couldn’t fit a wheelchair in it, so that ruled that out and they gave me a manual one instead. This was great, except I manage about a quarter of a turn before my shoulders and arms go into spasm, and don’t recover for about a week, which meant mum was forced to push me, which is not easy. You think the world is wheelchair accessible? There isn’t much I can say, other that it’s not.
So then we skip forward to buying the crap electric wheelchair, and it constantly breaking down. We then moved into an accessible bungalow and I am now having to use the chair a lot more now, even in the workplace. So I contact the NHS again and they inform me the policy has changed – they now only give them to people who cannot walk a step. Ever. I explain I cannot use a manual wheelchair. She’s sympathetic. I tell her my mum has damaged both her shoulders from pushing the chair, and lifting it in and out the car. She’s even more sympathetic. Then she tells me tough luck, policy is policy. Okay, she didn’t use those words – but it was implied.
And so I am here with a wheelchair which currently has no footplates. I got replacements a couple of weeks ago, but they both snapped off last week. On even ground. Action for Kids implied it would be months and months before I got near the top of the list, plus they judge you on whether you actually deserve a wheelchair (i.e. not on medical grounds, but there is a section on why you think you should be given one).
The warranty for my chair runs out in July. If I ask for a refund for the chair I will struggle to work, run the access group, or go out anywhere. If I don’t I’m stuck with it forever.
I need to apply for grants, but I just don’t have the energy at the moment.
I kind of need a shoulder to cry on right now, as it’s all a bit overwhelming, and at the same time I need someone to say oh pull it together and stop whining, you aren’t having babies any time soon, and it’s just a fricken wheelchair!
Yeah, it’s one of those nights.