Disability Aids and Management Plans
@river I use water bottles from Rebel Sport - they are Nike brand. The water only comes out if you suck... so I can drink when lying flat without spillages, Look for them on special!
I am hoping to get a powered wheelchair through NDIS. We hired one on holiday a couple of years ago... I cannot describe the feeling of freedom and independence!!
I also use noise cancelling headphones.
I have a couple of USB re-chargeable fans from Kmart... they work really well.
They are these ones:
@Blubenny Ooh, thanks for the tip!
RatsAreFluffy last edited by RatsAreFluffy
This might sound kind of, well, obvious, but a few years ago I had a brainwave. Sunglasses. I’ve always been really sensitive to light (comes with being ASD as well) but it got so much worse with ME. Going outside felt like shining a torch in my eyes. I avoided sunglasses for years, because I always felt the arms pressed against my temple and caused headaches. But I invested in some that fit right and it’s been worth it. I no longer have to spend energy just existing when I go outside, I never realised what a difference it made before. Now I never leave the house without them, and have several pairs.
@Blubenny I found a triangular cushion at my local cheap shop that appears to be designed for iPads and tablets. It’s super convenient because then I can prop it up at most angles. Obviously nowhere near as fancy as yours, and I can’t make it go upside down, but I can move it with me on the occasions I go to the lounge room as it is super light.
Also, I wish you the best of luck with the NDIS. I’ve found they’re not as helpful as I’d hoped, but that could be because they only seem capable of recognising my ASD and not the ME/CFS... which easily negatively affects my life twice as much.
Gigi McQueen last edited by
I’m asking mainly out of curiosity. If mine goes through this year, I’d get my TPD at age thirty, into my superfund. I also have some savings. Obviously there are a million factors , and financial advise is crucial - but genuinely curious to know if anyone feels comfy sharing (noting some people are anonymous )
Fee last edited by
My partner suffers from severe ME/CFS and POTS and is bedbound, and is having more and more issues with pain, mobility and flexibility. So we thought a physio might be able to help with some passive exercises, massage, lymph drainage etc.
Has anyone found a good physio in Sydney with relevant experience?
If you're not in Sydney (and also if you are) and had physiotherapy or treatment from another allied health professional (for example a massage therapist etc.) you found helpful, what kind of exercises/techniques did the physio/allied health professional use?
Hi @Fee - I'm less impaired than your partner, but in case it helps, I once saw a physio (in the ACT) that helped with a series of stretches I could do in my recliner. The stretches helped a fair bit with muscle aches and pains. If this sounds like something they could manage (and it may well not be), there may be some value in investigating gentle stretches that they're able to do in bed. Massage was the other thing they recommended (and which helped me - not a big full-body massage or anything like that, but targeted massage of the muscles in question for relatively short periods, every now and again), so even if they couldn't manage stretching, learning some massages he could have could possibly help with muscle pain. Best of luck finding something that helps.
salty last edited by Daffy_Dave
I see a physiotherapist from NSW via telehealth. I don't do hands on stuff, so it may not be what your after.
He has been excellent for me and I feel he is a rare gem for people with ME. We do anaerobic threshold monitoring (heart rate pacing) during the sessions of very gentle movement. He monitors for any signs of overdoing it.
He has multiple severe ME patients and has come to recognise patterns in how our HR's can respond to movement. For example, occasionally my HR will rapidly drop in response to an exercise and he straight away will tell me to stop and rest. His noticed this happening in his other clients as a sign of overexertion and often appears to precede PEM.
He is careful to avoid PEM and will not push you - in fact he has been very supportive of when I decide I've done the right amount. He says to put your energy towards life first and physio is the lowest priority. I never thought I'd find a health professional congratulating me on making the desicion to rest and respect my symptoms!
Hi @salty - we don't name health providers on the forums - too much of a legal quagmire in terms of the potential for it to be seen as recommended by (or criticised by, depending no the type of reference, but that's clearly not relevant to your post ) Emerge. I've removed the name from your post, but strongly encourage you to PM Fee with their name
my ME/CFS isn't as acute as most of you, which really bothers me, i.e. I wish you were well.
I don't think I've met another ME/CFS in real life before, so it's interesting.
Maybe hearing about someone (me) who's had it for 25 years or so can offer some hope of better days ahead.
I think my Homedics massager thing is my main health gadget. I'm on my 3rd one now as they tend to 'burn out' if over used (max. 15-20 mins). It helps a lot with sore muscles/joints etc. but it's a bit too heavy sometimes.
I've noticed those 'new' type (percussive) that look like a 'ray gun' but they are quite expensive, although I've seen the prices drop a little lately.
I would recommend having a clothes dryer.
People are often reluctant to use them as they can use a lot of energy, but here's how I use mine:
Most dryers have two heat settings: Hot or Warm.
My dryer is a Hoover from the 1970s, so not as efficient as the newer models, and I've measured it's energy use as:
Hot = 2200 Watts
Warm = 1150 Watts
So I only use it on 'Warm', and I only use for socks, underwear, and tea towels. All the little fiddly items basically.
This saves having to hang up or peg every little item, which often is the longest part of the drying process.
I find that 45-50 mins. will dry the above items. Sometimes the cotton socks are a little damp, so I hang those on the clotheshorse.
As long as the dryer isn't overly full, the warm setting will dry clothes pretty well, and the less heat is better for the longevity of the clothes as well.
45-50 mins. at 1150 Watts @ 22 Cents per kiloWatt/hour = 25 cents. That is not a lot of money. Well worth the convenience.
I only do a wash every 14-16 days, so that 25 cents per wash equals about $5.70-$6.50 per year.
I didn't get a TPD payment as I had no super.
I have been saving to buy a place in Queensland since about 2010.
I use uSave account with Ubank (part of NAB) online.
If you pay in $200 per month you get the bonus rate on top of the base rate which is a MASSIVE 1.1%!
Not much, but the best deal I've found for savings.
Hi @Gigi-McQueen Please know that this is definitely not advice, because I'm unqualified and have severe cognitive impairment, but...I used mine for a house deposit and relocated to a small country town. On the plus side, I no longer fear eviction and being unable to pay the rent, which was happening for me. On the negative side, moving to an isolated location has made it harder to access medical care because I can't be in a car long at all. Also, as soon as it came out of my superannuation the lump sum was taxable, so I needed to pay a financial adviser to do all that. Still, very happy in my home!
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
Dot last edited by
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.