I'm getting tired of being tired and in pain every time I go out. I want to be able to go out and do stuff. I really want to be able to go to the zoo. I want to see the tigers and I want to be not so tired that I can't think by the time I get there.
No matter how much hydrotherapy I do I can't work up to walking that far. The exercise helps my physical pain related disabilities but after a certain amount I crash from the ME./CFS. People just keep suggesting GET.
People keep assuming that my physical disabilities are all in my head (I bet that sounds familiar to a lot of people here) and that my PEM is just me being tired because I'm not fit enough. When I point out the extreme level of fatigue they just assume I'm extra unfit.
I might have to stop hydrotherapy anyway, last time I got heat exhaustion/ heatstroke and spent the afternoon half conscious and throwing up. Apparently they can't lower the temperature of the 33 degree water in the humid room on a 30 degree day.
The point of all this is that I think a wheelchair would help. I think it's the only thing that can help at this point.
The thing is though, with all my disabilities I can't earn my own money, I don't have the energy to apply for centrelink and I can't actually use a credit card.
My parents won't buy a wheelchair. They were able to buy my brother a new car, but apparently a cheap manual wheelchair is just too expensive.
They seem to think that if they can force me to act like an abled person, the less disabled I'll actually be. They had the same conversation when I wanted a walking stick, it took me months to get one. They're very sure that if I use a wheelchair when I need one I'll completely loose the ability to walk. They've done no research, they've decided that they don't want me getting a wheelchair based on a knee-jerk reaction.
I'm loosing patience with people who want me to look abled rather than feel happy. I'd buy myself one behind my parents back but the reasons above make it impossible.
I don't know what to do. My legs hurt and I'm exhausted.
(For anyone wondering, yes I am an adult. In theory this is my decision to make. Welcome to having a developmental disability and a guardian as an adult.)
Hi @Rainbow-Zebra .... sounds like you have a great bucket list of things you really want to do. I haven't been to the zoo for so long, as I live regional. I try to get amongst the wildlife as much as possible when I can and when I can't I try to get photos from the backyard ventures of birds etc. We do have an echidna living in our backyard area somewhere as I saw it one night and there is evidence of some ground digging. Apparently they send out electrical signals through the ground to find the ants and this explained why the dog was going crazy at night, around 11pm for weeks, wanting to get outside. Of course we didn't indulge the dog with this behaviour as she most certainly would lose any attempt to interfere with the spikey creature. I always enjoyed seeing the baby zoo animals. I have been to Dubbo Western Plains Zoo in the past as well as the Melbourne Zoo. The Dubbo Zoo had a white tiger last time I was there. It's great to have an interest in animals as they can bring so much entertainment and joy to our lives. Hold onto your wants and desires and always seek solutions to barriers. The sun always shines after the rain ... take care
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A wheelchair can make all the difference at the zoo. I'm thinking of Melbourne zoo where you can book one free of charge. I was still exhausted after the day out, but at least the wheelchair made it possible. (When I got out of it to go to the loo someone nearby called out 'hey! that's cheating! )
You do need a good strong person to push you around.
You are right about the problem people have with wheelchairs. Some people (like you) are just so glad that they mean you can do something you wouldn't be able to do without them.
Some other people feel like they are giving up, and they are saying to the world they are not a whole person anymore, or that they are accepting their illness is this debilitating.
And family and friends can have similar responses.
Maybe you can negotiate with your parents to try out a wheelchair on a zoo trip, and then see how much of a difference it makes?
Re organising a wheelchair (or mobilty scooter?) for yourself, I imagine it would be a long tricky road for you negotiating your way through Centrelink and NDIS.
However, don't think it is impossible. Keep working out the next step, and divide it down smaller and smaller until you get to something you can actually do. Do that, recover, and then start working on the next step.
I know, it is like climbing Everest, but people do climb Everest. And you will learn heaps on the way.
And oh dear, not just Centrelink and NDIS, but parents too! They can be the most difficult of all (I've had parents and I've been a parent!) but same thing. Step by step learn to be an even more skilled negotiator (kudos for getting your walking stick).
Sending best wishes
So sorry to hear there are so many obstacles to navigate @Rainbow-Zebra. Just wondering if your parents would be open to reading any articles on the benefits of using a wheelchair for ME/CFS? If so, hopefully we could find some links that might help them understand that any mobility aids improve quality of life and enable rather than disable.
@crashdummy An echidna?? How cute!
My dog keeps trying to play with shingleback lizards (idk if you have them in the eastern states, they're like bluetounges). I keep having to rescue the poor things, and they keep trying to bite me. (do not get bitten by one. My thumb hurt for the rest of the day...)
@Dot the problem is that I have issues with people coming up behind me, so I'd have to push myself. I've seen the wheelchairs they have at Perth zoo, and they're not designed to be used by the person sitting in them. Also my mum keeps loudly telling me how she couldn't possibly push me in a wheelchair.
I'm not officially diagnosed with ME/CFS, and every time I say I think I have it my parents just straight up ignore me so it doesn't look like I'll be able to be diagnosed any time soon. I think they actually think that if they bury their heads in the sand it'll just go away.
Mum keeps saying I don't have a diagnosed chronic pain condition even though I have two. Like my shoulder literally randomly dislocated one day and she doesn't believe I have a genuine issue with my joints. I've reminded her that the doctor said I also had FND and all of a sudden she "Doesn't remember it like that" even though we had the same version of events up to this point.
The NDIS won't recognise any disability I have other than autism, so they won't fund a wheelchair, anti-fatigue mat or any other assistive devices.
I really don't understand people's problems with wheelchairs... like I'll still be a whole person, plus a chair. It doesn't take anything away, it'll just make me less tired and cranky. It really feels like my parents are putting the idea of a non-disabled child above their actual disabled child.
@Rainbow-Zebra I have seen a huge lizard on a branch, in the pear tree. It just sat there and didn't move. I wasn't going to touch it: too big for me. Unsure if it was a blue tongue or a shingleback .... I haven't seen it since, so I suppose it didn't like me and decided to bugger off. Well at least you can add ''bitten by a blue tongue'' to your list of life experiences. I must get batteries for my digital camera and have it ready to photograph what I see. My phone is only a samsung S5 and the camera isn't the greatest. Come to think of it the digital camera isn't the greatest either but it does a better job.
@gretch maybe, but they refuse to even consider the possibility of ME/CFS. I could probably find some articles on my other diagnosed disabilities, but mum's now decided that I don't have those either and that the written reports are... a figment of my imagination?
I might try finding some in a bit anyay.
@crashdummy It sounds a bit like a frilled neck lizard with it's frill down... I don't know much about other state's lizards though, there are a few that climb trees. I've been bitten by a pretty good range of animals, I used to volunteer at a wildlife shelter. Parrot bites are the worst, though emu bites are surprisingly harmless.
I don't volunteer there anymore though. Between the fatigue and the rumours of wildlife trafficking (!) it wasn't really worth it.