Disability Aids and Management Plans
passiflora last edited by
I've recently found a good GP and we've spoken about various management possibilities for my ME/CFS. One of the things I'm looking into is the Chronic Disease Management Plan (CDMP).
I don't know much about it, and I can't find any information on people with ME/CFS who have/use a CDMP. My GP said it was worth looking into, but to prepare myself in case any treatment plans try to push me into ye olde exercise therapy-and-CBT strategies.
Wondering if anyone has any experience they could share?
I find it really strange that I've never heard about this before! No one has ever mentioned it to me, at least not by name. I've done the thing where you fill out a questionnaire to be eligible for medicare rebates on therapy (the questionnaire is about depression and anxiety symptoms) and I'm wondering if that's a type of CDMP? That plan lasts for a fixed number of appointments, I believe. I know of people who've got them for physiotherapy as well.
river last edited by river
I thought I would start a thread for discussing what aids, tools and household items help us manage our symptoms. This can be anything from mobility aids to household items and accessories. I'll kick it off with a few of mine.
I have a couple of mobility aids: a walking stick with a seat built in (it folds out), a folding walker with adjustable seat and handle height, and a powerchair.
The walking stick doesn't get used anymore because a) I now try to avoid walking at all if possible and b) it was never very comfortable, the seat is hard plastic and too high off the ground for me. But it was useful for a brief while.
The walker is great when I have no choice but to walk somewhere, as it means I can sit down comfortably and allow my body to rest when my heart rate gets too high. I deliberately sought out an adjustable version because most walkers have a high seat designed to put your legs at an angle (not parallel to the ground) which is not good for me.
The powerchair is INCREDIBLE and I'm extremely lucky to have it. It means I can run basic errands with minimal, sometimes even no payback at all. It also has a power tilt feature, which is extremely helpful for rapidly bringing my heart rate down. I use this often around the house when making myself meals or doing chores; if I start to approach dangerous levels of exertion I just tilt the chair back for a bit, wait for my heart rate to stabilise, then carry on doing what I was doing. I've used it in public as well when I've started to feel faint from being upright too long.
On the 'household items' side of things, one of my most prized possessions is a 3-tiered trolley on wheels (from ikea). I have this by my bed and it contains everything I could need during the day, within easy reach - all my medications, my diary/planner, headphones, snacks, symptom notebook, toothbrush, various bits of stationary, etc. The contents changes all the time as I add and remove whatever I'm using the most at any given time. It actually makes me quite anxious to have to go to other people's houses because I won't have my trolley! My trolley makes me feel safe.
A few smaller things that help me are:
- noise cancelling headphones
- popsockets (stops me dropping my phone on my face,which used to be a frequent occurrence )
- small USB desk fan. I recently got a second one that's battery operated and has a clip, so I stick it anywhere I need it - originally intended for my wheelchair but I've used it other places too, including clipping it to my music stand while playing the piano - I get horribly overheated doing any kind of activity.
- heated blanket, because I also get horribly cold during flares
- edited to add because I forgot it before: reclining laptop stand ("Laptop Laidback") - not great for typing on, but excellent for watching movies and other passive computer activities while laying down
Great thread River That Powerchair sounds all sorts of awesome That trolley also sounds great as well. I'm at a relatively higher level of functionality (and I'm sure we'll find different levels of severity have different "must-have" adjustments), but for me, by far and away the most important thing is my recliner, with a jerry-rigged mousepad that sits on one of the armrests, and a wireless keyboard, combined with a big TV (40-odd inches) so that I can see everything alright from a couple of metres away - this enables me to type (and thus interact and do things) with minimal energy, but the way it's set up I can go horizontal as and when, and do anything from watch Netflix to just lay there.
It's also really nice as if I'm really tired (like tonight), I can type a little, then rest, then type a little more, and so on. I've got a water bottle next to one side (glasses got spilled far too often, which was very spoon unfriendly!) The desk that the TV sits on is also in just the right spot that when I get up, if I'm a little wobbly, it's the right height and place to be a good 'steadier'. There's also a cushion within reach, so that if I want to look at anything right in front of me (eg, my phone, a book), I can rest my arms and whatever it is on the cushion.
The most important thing for me was finding a recliner that was back-friendly, had good, wide-armrests and also had good head support. Everything else works around that.
@Daffy_Dave that sounds like a great setup! You reminded me of another adaptation that I've found useful, which is turning old sports drink bottles into my regular water bottles. A while back I had a bottle of powerade and the cap is one of those ones that you can pop. After I finished the drink I washed it and now I use it everyday for water. The advantage is it's harder to spill them, AND I can actually drink from it lying down (with caution). Disadvantage is the flavors in powerade are super strong and are absorbed by the plastic so it's taken a long time for my water to stop tasting faintly of pineapple I've been wanting to get a bottle specially made for drinking while reclining, but honestly I don't really need one with the powerade bottle working so well.
Your power chair with the reclining feature sounds brilliant @river. I use a mobility scooter and the sitting up straight for too long is what fatigues me the most. In saying that, I couldn't live without it though. It's not a perfect solution but it does enable me to get out of the house for a short while. Even a half hour scoot around the block is better than nothing. I like the autonomy of a mobility scooter rather than someone pushing me in a wheelchair, but I do use both. Might need to do some research into powerchairs!!!!
I find noise cancelling headphones are a great way to calm my nervous system, so those are a must.
I have had Chronic Disease Management Plans over the years. It entitles you to 5 sessions with allied health professionals - I have used exercise physiologist, physiotherapy. Depending on the business, that may cover the full cost or there may be extra charges so it’s good to ask that up front. It is about setting goals and then reviewing them. The GP visit is bulk billed as part of the plan and the review.
@river You are referring to a Mental Health Care plan which I think from memory covers 10 therapy sessions. It is the same concept.
Terrific thread, @river! I love all the tips here.
My little one to add: satin pillowslips.
I’m mostly bedbound, so my head is resting on pillowslips most of the day. I also have long hair (because I can’t get it cut often). The biggest problem for me with managing my hair has been knots. I can only shower once a week, so the knots really build up, and wear me out trying to brush them out. And brushing my hair every day to reduce the build up isn’t really an option either.
A friend suggested using satin pillowslips (silk would be better, but costly), and even bought me one to try. I was so sceptical, and thought it was an old-wives tale that they would reduce knots. I was blown away that it actually worked!
I’ve now bought a bunch of them, and sound very Princess- like when I say that I only sleep on satin pillowslips () but they have reduced the knots in my hair so much, and aren’t expensive.
@Daffy_Dave that sounds like an excellent setup. I'm trying to set myself up for work from home and it's a process. I have my dad's old recliner, but it's designed for someone resting all the time, not using a computer. I have a laptop, and I ended up getting a cheap laptop tray from Officeworks then rolling up and taping a foam roll so that my wrists rest on that and the laptop stays put rather than sliding down my lap all the time....I work semi reclined with a big foal roll under my legs to keep blood flow to the old brain going. I find though if I try and make any supports permanent they get uncomfortable after a time and I end up shifting them around, so I have lots of pillows etc to be able to shift position.
@Simone_Em_Aus I'm going to have to try this now! Where would you recommend getting them?
I shaved my head recently so I don't have this problem so much anymore but I have incredibly thick, wiry, gravity-defying hair and I can't wash it often for the same reason as you. Anyway I feel like satin would just feel so much nicer against the skin.
@river I got mine from Adairs (they were on special, plus my mum has a loyalty card, so I got them cheap). The one my friend bought me was from Spotlight. I can’t tell the difference, TBH.
Spotlight has a sale right now - $6! For $6, I reckon it’s worth a try. I don’t have the same sort of hair that you do, so I don’t know how well it will work for you, but the satin pillowslip definitely feels lovely against the skin. Makes being in bed just a little nicer.
I don’t know if this is the one my friend bought me, but just know she got it from Spotty.
@Simone_Em_Aus _ I have silk pillowcases, not just for my hair but because my face has become really sensitive . Mine are from Canningvale... they often have sales; I wouldn’t pay full price
I love my recliner! I have a table that swings over and is height adjustable - its fantastic! I also have a two tier tray thingy from IKEA, next to my chair.
My table is like this, but without the high pole to help you get up:
The tray is no longer available, but IKEA have a good range of tray tables and trolleys and they now deliver.
I also have an iPad stand that I bought from Amazon - I use it when I’m in bed. It’s great for when I’m lying on my side - usual position - Not so great for lying on your back as its not high enough for me.
It’s this one:
@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.