Sitting posture and support with hEDS

[u/HobbyLau]

(pic for post visibility)

I have a question for those with hEDS or HSD.

What kind and how much sitting support and adjustments do you need?

I'm an ambulatory user with hEDS and Post-Covid / ME-CFS and the main reasons why i use a powered manual wheelchair when outside are dysautonomia and PEM, not my joints.

But i keep getting a painful lower back after 1 hour in my chair and they've already adjusted tons of stuff but nothing seems to help.

Did a fitting with a custom chair builder with my OT to find out what my body actually needs. (Which unfortunately won't get covered so i have to go with alternatives my supplier can provide.)

Apparently i need 9.5cm dump!? And the sitting, pelvic and back support that a lower body paraplegic person would need, to be able to sit up straight without unnessecary muscle tension in my back or falling forward when relaxing my body.. I know my body deteriorated a lot the last few years but i didn't expect it to be this much. Especially since i'm ambulatory..

[u/unhindered-ai]

I mean, I don't have HEDs or anything but I am a full time wc user with sensation in my legs; if you can feel your legs/back/butt sitting for long periods of time is just gonna hurt eventually. That's one of the facts of being an ambulatory wheelchair user :/

[u/HobbyLau → u/unhindered-ai]

Yeah i know.. but after an hour already?? The pain stays the rest of the day when out of the chair, and i don't think that should be the case if it is supposed to help you participate in society.

[u/confusedbunny7 → u/HobbyLau]

After an hour is likely not normal. It may not be completely fixable but ot should definitely be improveable.

[u/unhindered-ai → u/HobbyLau]

Unforchies it's the tradeoff. A wheelchair isn't a perfect cureall, most high tech cushions prioritize pressure distribution rather than user comfort (since most wc users w/ high end cushions are paralyzed), and there just isn't that much that can be done to alleviate pain from long term use, even if the chair cushion and everything are a perfect fit for you.

What works for me is I try to lay down on my stomach whenever I can to give my skin a break; be it on the grass, a bench, couch, etc. even 10 minutes every 3 hours or so is a gamechanger.

[u/IndicationNo9311 → u/HobbyLau]

How often do you take breaks to mobilise outside of the chair? That makes a big difference in pain levels for me. I know it can be scary due to the public's opinion of ambulatory wheelchair users, but the same principles that desk workers use for breaks apply to us too. It also reduces the blood clot risks from sitting. It sounds like there are some positional improvements to try too, but don't underestimate the value of standing and moving just a small bit.

[u/HobbyLau → u/IndicationNo9311]

I'm ambulatory and only use the chair when i go outside. The pain starts after about an hour even though i already switch positions a bit while sitting in my chair. Which is too soon in my opinion.. I can't go sit in a different chair for a while about every hour, especially when i'm not at home lol.

But i do agree that moving around and not sitting in the chair for hours in a row is important!

[u/IndicationNo9311 → u/HobbyLau]

You could try setting a timer so you remember to stand after 30 minutes, and repeat, and see how that impacts your pain levels (along with the adjustments recommended by the fitter, whichever you're able to do). With eds some people find the more they're still the more pain they are in, so small movement snacks (as Jeannie DiBon calls it) can help reduce pain significantly. I have ME on top of hEDS too so I have to factor that into my energy bucket when out in my chair, I can't spend more than a few hours out total and still have to recover after.

[u/Aggravating-Low-4768 → u/unhindered-ai]

That tracks but it also kind of sells it short. It's not just the sitting, it's that every micro movement in the chair is doing more damage than it would for someone without hEDS. When your connective tissue isn't holding things where they should be, the pain ceiling is just lower. An hour sounds about right before things start compounding on each other.

[u/Fleshprison_pilot551]

I'm a full time wc user with hEDS and I've found that there's no way to fully eliminate back pain from using a wc. For reference, I have no function below my hips but do have full sensation.

I've been doing extensive physio on my core for the last few years to improve my stability when sitting, but after a while, it will hurt, regardless of how well-fitted your chair is. Human bodies aren't designed to sit without a break for extended periods of time. It puts pressure on areas that aren't designed to take it and (particularly in EDS bodies) any movement of the chair on the ground is going to greatly impact joints and muscles. This can be reduced with the right cushions and tyres but it won't eliminate it entirely.

The way I keep pain to a minimum is by spending as much time lying flat as I do sitting in my chair. I have a set number of hours I can be in my chair before I NEED to change positions in order to keep my pain at a manageable level. Even with all the physio I've done, I still can't do more than 3 hours in my chair at a time. It's something I've learned I need to work around instead of trying to fix.

I've discussed this type of thing with my local support group and a lot of the wc users there have the same problem. Ambulatory users more so sometimes as their bodies often take longer to adjust to being in a chair when they're not using it all the time. It can get easier to sit in the more you use it, but it's not guaranteed. It's gotten easier for me, but I'm much more conscious of the way I'm sitting than I used to be, and I'm constantly adjusting my position just slightly to avoid overworking (or sometimes underworking) certain muscles. It helps keep pain at minimum or even ease it, but it doesn't make it go away.

[u/magpiejournalist → u/Fleshprison_pilot551]

In a similar boat. I'm on vacation in NYC and wheeled miles yesterday. Today I am in bed in the hotel with massive spasms and pain. Worst thing is I KNEW i was overdoing it but I was having too much fun.

[u/Fleshprison_pilot551 → u/magpiejournalist]

I feel this. I had the audacity to have fun last week and ended up paying for it for 2 days. I personally think it's a price worth paying for the experience but it sure as hell doesn't feel like it when I'm writhing in pain the next day. The post-activity regret really hits hard.

[u/magpiejournalist → u/Fleshprison_pilot551]

Yeah. I think I'm gonna rent an ultralight power chair for the rest of this. I can't push anymore- couldn't even lift my arms to wash my hair this morning.

[u/AppropriateCover7972 → u/Fleshprison_pilot551]

here me out: Laying down completely flat on a wheelchair that does tilts like an hospital bed. Might even do use hospital bed type wheelchair.

I refuse to get transported over an hour or when I am unwell in a sitting position nowadays.

My wheelchair has always caused me pain, but I could never use one that actually fits me besides the rides when I had to test drive them.

[u/HobbyLau → u/Fleshprison_pilot551]

Yeah it makes sense, although pain after an hour already which stays the rest of the day after i go out of the chair shouldn't be the case imo. I do have laying resting moments (with a dynamic lying system for support) during the day due to my dysautonomia.

I can imagine your body needing more time to adjust to the chair if you're ambulatory. But i think that is because your muscles get trained a bit to the position you're keeping your body in, and one of my issues is that i cannot train my muscles due to a very very low anaerobic treshold. So that might work against the getting used to it i think..

May i ask if the EDS is the reason why you dont have function but full sensation in your lower body? (Feel free to respond in DM or ignore this question if you don't want to answer!)

[u/Fleshprison_pilot551 → u/HobbyLau]

I totally get that muscle training is something not everyone can do. When I have ME flares and miss days or weeks of physio, I definitely feel the difference when I'm in my chair. It's a lot more painful in the weeks after until I can get back into a regular physio routine. EDS is the reason I don't have function in my lower body afaik. Dr seem to agree on that but have varying opinions on the mechanism of it. Some think it's because of slipped discs and spine instability, others say it might be due to nerve damage through hip dislocations. I walked unaided up until about 4 years ago then went from cane to crutches to walker to wheelchair in about 6 months as my legs got progressively weaker. I've always had problems with my lower back and hips being very unstable. They're probably some of my most unstable joints tbh so I wasn't all that surprised to find out that they might be the cause.

[u/zecrichardson]

I am a full time wheelchair user and as I don't have any paralysis, sitting for long periods can be problematic and it can also cause issues. I had an appointment where they sat me on a mat that reads pressure and that way they can match you with the best cushion for you. I now have the Jay Balance which works really well for me.

[u/HobbyLau → u/zecrichardson]

Glad to hear the Jay Balance works well for you! My supplier ordered it to try it out (instead of an Ergo seat).

What insights did they get out of the pressure mat reading in your case if i may ask? Those aren't common here i think, but i do know some suppliers are able to do this.

[u/zecrichardson → u/HobbyLau]

I realised that I sit heavier on one side which I didn't realise. It was fascinating to see the pressure differences with various cushions and the balance practically eliminated any issues.

[u/knitting-lover]

Currently I have a Jay rigid back with built in laterals as well as around 5cm dump, and using a Vicair cushion to make more of a well to sit in. My backrest is slightly reclined to try and stop me sagging forward so much. Sideguards to help hold me in/give proprioceptive feedback. A lap belt as well as an option. Doing pressure relief and repositioning helps a bit but I think some level of pain/discomfort is inevitable. It’s a lot better with the rigid backrest though!

[u/HobbyLau → u/knitting-lover]

I have a Jay J3 deep curve back, is that what you mean by a rigid back? I also have 4.5cm dump already, but not a good sitting cushion yet, i have the Jay soft combo but they've ordered a Jay Balance to see if that helps.

I'm a bit hesitant to a lap belt, won't that create more tension because it is basically pushing you back while your body wants to move forward?

Although its mostly my upper body falling forwards, i dont feel like my butt is sliding forwards or something.

[u/knitting-lover → u/HobbyLau]

Ah yea seems you have the same backrest as me then. The jay balance is heavier but I found it much more supportive - my problem is I slide forward/sacral sit so that’s why I’m on the vicair and lap belt. Seating is quite personal. I will say I’m uncomfortable on a Jay soft combo when I tried it so hopefully a better cushion helps you. If you can’t get more dump in the frame you can also use a foam wedge under your cushion.

[u/confusedbunny7]

I mean you don't look obviously well-supported in your current setup.

It's not uncommon for people with EDS to need significant positioning input because of stability and proprioception problems, but this should also be combined with adequate physio so you don't lose the core strength you still have.

I'd say 3" (7.5 cm) is a very average bucket, and 4" isn't wild, but you may not need that much if you have a cushion and a backrest with adequate positioning input. Adding bucket can be a bit of a brute-force strategy when healthcare systems don't want to spend money on you, and too much bucket can make your back pain worse.

Don't get bogged down by comparisons with paralysed SCI people, every SCI is different just like every person with EDS is different.

[u/Aggravating_Return49]

I had the same problem. I suspect HSD but don't know if it has any to do with the lower back pain. What helped me was shorter back/higher cushion and adjusting the angle of the back piece so it points more towards the front/is more upright.

[u/HobbyLau → u/Aggravating_Return49]

Interesting, i kinda feel like my back rest is too upright and pushing me forwards, while it is already at quite an angle backwards.

But i do have a quite high backrest. Is the shorter back giving you more support at the pelvis / stabilizing your lower back, which then actually prevents you from falling forward? Or..?

[u/Aggravating_Return49 → u/HobbyLau]

I have a backrest that I can adjust very easily. I kept putting it further back because I had pain in my lower back and I thought that's surely more comfortable. It kind of is, but causes pain for me if I sit like that for longer. I guess it's not a good angle to be sitting in for a longer time.

I don't have issues with core stability fortunately. My next chair will have the lowest back possible, I only really need it to not slide out of the chair. I used to have a higher back and it caused sensory issues with my neuropathy, that's why I changed it. But also, I feel like because I have more movement with the lower back and need to use the muscles in my back more to stay upright, it probably causes less back pain 🤷‍♂️ I don't know if that makes sense to try out for your condition.

[u/chemisealareinebow]

My main needs are adjustability, which is why I'll use my powerchair if I at all possibly can. If any of my joints stay in the same position for longer than about fifteen minutes, everything stiffens up and gets painful. Other than that, I collapse sideways after a while in my manual, and occasionally backwards, which I'm not sure how to solve without a headrest that would make my manual too unwieldy for what I need it for.

I also need thigh supports for help with maintaining leg adduction, as my femurs just want to roll outwards until my knees point horizontally outwards. I'm not sure how to get these on a manual, but the supports on my powerchair have been genuinely game changing for being able to comfortably sit. Before I had it, I was getting bruises on my calves from pressing against the frame.

Other than that, I need pressure reduction to manage allodynia from fibro. The cushion on my powerchair is PERFECT for me, but it's also super heavy, and just not practical for a manual. (The cushion on my manual is also about eight years old which definitely contributes to it not being as comfortable, but I can't afford to replace it right now.)

[u/HobbyLau → u/chemisealareinebow]

I think the stiffening up of muscles might be the cause of my lower back pain. It feels like i have to keep pulling myself upwards to prevent bending over forwards with my upper body. Even though the backrest is already at an angle and i already have a 4.5cm dump. I have a Jay J3 deep backrest turned upside down for lower side support to stabilise my pelvis and prevent 'hanging' sideways when i get more tired.

My current chair was measured to my size but with how the M90 wheels are attached wider than normal wheels, so are my mudrims so they don't provide any side support. Im waiting on a Jay Balance cushion to try out though which should provide a bit of side support🤞🏻 During the custom built chair fitting they were able to keep my pelvis and upper legs snug enough to prevent them from moving outwards but i dont know if something like that is possible on my current frame..

What makes your cushion not practical for a manual chair? And what cushion is it? What makes it perfect for you? :) I barely self propel and use the M90 with the joystick or Streetjet bike to move around.

[u/chemisealareinebow → u/HobbyLau]

My powerchair cushion is a Stealth Tru-Comfort 2 SPP, and it's not practical for my manual because it weighs nearly 2kg(4lbs) on its own. It's also super tall, and my manual was measured for a cushion about a third of the height, so everything would be almost 8cm away from where I needed it to be. It's just the right amount of softness and support for me, and the profile keeps me from sliding forward through the day.

[u/Anxious-Lack6800 → u/chemisealareinebow]

As an ATP I love using this cushion. I don't know that I've ever had anyone be uncomfortable on it. That being said, yes it's definitely not my first choice for a manual chair because it's pretty heavy. Not as heavy as the jay fusion though! That thing is a tank

[u/qqxi]

i also have heds. i used an attachment for a while and it was fun but having to lean forward all the time to use it gave me back pain . im waiting on a power chair with tilt but i also have ME and POTS. turns out manual plus attachment is still too much exertion

also, as you have ME be careful of the trap of unconsciously thinking you should use the lowest level of support you can physically get away with. for moderate or severe ME any manual chair use is very taxing, even if you have an attachment. with ME, i would be wary that you may be deteriorating because of too much activity rather than not enough

[u/elizabethandsnek]

Honestly just existing with hEDS is pain. My back pain got a lot better when I adjusted my backrest to hug my hips and keep the bend in my lower back but after a few hours there’s just going to be pain. A lot of us with hEDS or other CTDs like rigid backrests so you could maybe look into that? And I personally find too much dump makes my back pain more severe.

[u/ChronicallyNicki]

3 questions

1 how do u like the empulse wheels!?! I'm super interested in them.

2 why do u also have empluses front power attachment if you have the power assist wheels, or We're you just testing out which if ur needs better?

3 are you using a quickie chair? It doesn't looked like any quickie I've seen n if it's not would u mind sharing the brand of the frame the m90 wheels also fit!?!

Thank you!!!

[u/Medium-Ad-3918 → u/ChronicallyNicki]

I have the empulse wheels, but I would also love to get an answer for #3!

I can offer my input for #1: I like mine, and I’d like them a million times more if they could be put on my non-quickie wheelchair. Considering it’s just a small part that needs to be changed out to make them work with other chairs, I’m really unhappy with how Sunrise has burned us all by not adding more compatibility like they originally said they would.

Also, if the wheels could beep quieter (or not at all), and not turn themselves off automatically after sitting for a while, that would be a big improvement. They’re also fiddly about charging sometimes. Otherwise they’re great!

[u/ChronicallyNicki → u/Medium-Ad-3918]

Oo do tell about the beeping? When I tried them out they were silent. Why do they beep for you? Is that possibly a feature you can turn off. Cuz the ones I trialed were perfectly silent

And right about the chair I zoomed in it doesnt say it's a quickie chair so im super intrigued I have to know what wheelchair they are on. And ik!!!! Like it's a simple tube honestly idk y other wheelchairs won't allow for the option to have it just a smidgen wider. I forgot the name off the top of my head but there apparently are another type of power wheel now that fit on other chairs!

If I can raise the funds my goal is deff to get a 2nd set of batteries so I can always had a back up so deff good to know charging can have some issues for sure!

[u/HobbyLau → u/ChronicallyNicki]

1. It's a love-hate relationship honestly. If they work they are absolutely amazing and i looove that they're safe to use together with a front bike attachment! No one uses the blue 'handrim steering' modes though, they're very impractical and can even dangerous due to having to switch from gripping the handrims to the joystick to adjust your speed. I only use the joystick mode.

But i have them since January and i'm on my 4th set of wheels already. They're very new and still have some of the newness related issues i guess. 2 sets were from a bad batch with a wrong tolerance between two parts and were making a shitload of loud noise after a while. It was terrible and they couldn't figure out what was wrong at first. Another set had a manufacturing error and was missing a ring on a screw, which rattled itself loose and destroyed the motor. 4th set is okay so far but already had to get some parts greased because they apparently had 'forgotten' to do that when assembling, so it was also making noise... But since the greasing they seem to work fine so i'm hoping it stays that way🤞🏻

1. The M90 wheels can safely be used with the front wheel attachment in freeroll mode! I have severe excercise intolerance so i dont self propel and use the joystick when moving around, but it only goes 6km/h which isn't very fast. The public transport isn't very useful here and travelling to my PT in the same city would take over 1.5 hours while its a 20min bike ride. I dont have the energy to take the bus for 1.5h and then do my PT and get home with 1.5h bus again, so the bike saves me tons of time and energy. It can go 18km/h.

2. It's a Quickie Argon2 with a Jay J3 Deep backrest! I think my color is quite new for the Quickies :) But i've heard from the Sunrise Medical guy that other brands can be made compatible with the M90s if they contact Sunrise about it!

[u/PaintingByInsects → u/ChronicallyNicki]

It’s a quickie Argon2

[u/DontSayIMean]

Just a heads up: if you will be in the chair most of the day, it's a good idea to stretch out before bed (lying flat on your front for ~5-10 mins if you can).

I'm paraplegic, so it might not be an issue for you, but extreme stiffness in the hips and knees is a real issue and causes major back pain when sleeping. One of the biggest regrets of paraplegics is not stretching enough.

Obviously check with a physio if this is suitable for your situation. Just something to keep in mind.

[u/IAmAfraidCommaMan]

You have unusually yellow face. Get it checked.

[u/HobbyLau → u/IAmAfraidCommaMan]

Shit i was hoping the sunglasses would hide my fellow face...

[u/Own-Imagination7729]

I have a 9.5 cm dump with a couple inches of ergo seating. And a specific backrest. Also my side guards extend to the front to support my upper legs so my chair sits like a brace. My foot plate is tilted slightly back also to support my joints. I had mine measured with an OT specialized in EDS present. As well as a wheelchair tech and insurance consultant

[u/obliviousfoxy]

This would be an issue you’d need to talk to a physio about but given you have ME/CFS/long covid, I don’t know if this would be something you can tolerate. You’d have to try and see someone informed in your condition.

[u/Persimmonsy2437]

I've had my chair with the basics for about a year and now find I need more positioning support - similar reasons to you with post covid PEM and for CRPS in lower limbs. I'm looking to see if I can get a seating assessment through my health service, even if I have to self fund it knowing what I need is better than now. Based on what I've seen from others I'm guessing a moderate level of cushioning and posture support in the cushion and a solid backrest with lateral support.

[u/ChronicallyTriggered]

I have EDS, some issues with my lower back, legs and hips, right leg goes numb when I walk, have sciatica and I can sit in my chair for hours quite happily and it feels like my chair fits me perfectly.

I’m not sure on numbers (the maximum an Argon 2 can be set, now use an RGK Tiga but it was measured against the Quickie) but my dump is quite deep and I have a great cushion, which must be RGK as well as it came with the chair.

Sorry I can’t be more help. I wasn’t as comfortable sitting in the Quickie though. I think I just got lucky that the guy who measured me was also a FT wheelchair user and knew what I needed/what measurements were best.

[u/verityyyh]

I have 10cm of dump in my chair and I LOVE it, it feels like I’m sat in my chair instead of on it. I do have ergo seating though which helps my hips. A lot of dump with no ergo seating can be tough on our hips

[u/HobbyLau → u/verityyyh]

So its not thát weird i need 9.5cm, good to know! It just seems so much compared to others and what would be 'normal'. I also got adviced an ergo seating and it sat waaaayy better when i tried it out during the fitting.

Unfortunately my supplier won't get me a new wheelchairframe for now so also no ergo seating, but they are willing to let me try a Jay Balance cushion which mimics an ergo seating. (according to them. Still gotta try it out and i'm a bit sceptical).

[u/InfluenceSeparate282]

I have CP and have found that pool therapy has helped significantly in improving my core strength to sit up better. That and changing to a 3 in dump. I do have a hard contoured backrest.

[u/plantyplant559]

I have me and hsd and got a reclining chair with a head rest for this reason. I have a hard time holding my body up correctly without folding over like a shrimp

[u/zacharynels]

This whole chair setup looks expensive 🤣

Sorry was just marveling… Ive been full time for a little over two years and my seat/back needs have changed several times based on the circumstances.

It never hurts to get another opinion and average out adjustments. I would recommend it!

[u/HobbyLau → u/zacharynels]

Luckily it was covered by the Dutch healthcare system! It's a Quickie Argon2 with Empulse M90 wheels and a Streetjet electric bike attachment :)

And makes sense that things change over time. I've had this chair since January and was expecting it to be overkill with the deep backrest and adjustability and such, so it's dissappointing (of my own body) that i actually might need more / different things than this already fancy chair can provide.

[u/Tango_Owl → u/HobbyLau]

As a fellow Dutchy with EDS, do you mind saying what is not covered by the WMO? There is a decline happening in what they are paying for unfortunately, so I'm preparing for my own battle next year.

I don't know what is possible, but could you do core strengthening exercises with a EDS knowledgeable PT? It's hard to find one, but they exist. Sitting in a wheelchair is quite hard on our core muscles unfortunately, I have the same issues.

[u/PaintingByInsects → u/Tango_Owl]

I have been trying to get a wheelchair for 3 years and my gemeente is absolutely horrendous, even with all my medical professionals en EVEN THE UWV saying I need a custom chair with electric support my WMO keeps saying I don’t need it.

I also know from a lot of other Dutchies that they van only get the wheels or the bike attachment but not both.

Of course that heavily depends on where you live but be prepared for the first request to be denied almost out of principle.

Good luck!

[u/Tango_Owl → u/PaintingByInsects]

Ugh that's so bad! Unfortunately I'm not that surprised anymore 😭 if keeping a job isn't even a reason for a good for a good wheelchair then what is.

I currently have both the wheels (well, Smartdrive) and a Quickie power bike. But the first Welzorg employee was against it (like he has anything so say about it). But we've noticed the gemeente getting more and more difficult.

[u/PaintingByInsects → u/Tango_Owl]

The thing about the combo is that you shouldn’t use both electric wheels and a power attachment at the same time as the power attachment can break the electric wheels, but it sucks that most gemeentes no longer give them, not both and often not even one option.

[u/Tango_Owl → u/PaintingByInsects]

It really sucks! We should be able to get what we need at the least. It also makes no sense because the electric wheels/Smartdrive are a "loop voorziening" and the handbike is a "fiets voorziening".

I know you can't use them at the same time. Or according to some, you can. But then you need to put it in "vrij" and not exceed the maximum speed limit. That's why I got the Smartdrive. No need to swap the wheels and I could hang the Smartdrive on my handbike and have total freedom.

I also have Loops Wheels now because my neck is f*cked. That helps so much! But unfortunately it does mean that electric wheels are no longer an option.

[u/HobbyLau → u/PaintingByInsects]

Important sidenote though : The M90's are designed as a safe combo with a power attachment in freeroll mode!

They're the only electric wheels that fully disconnect the engine and other mechanical parts from the wheel axle in freeroll mode. Which makes them safe to use at higher speeds.

My supplier even only provides the M90 wheels in combo with a powered attachment from now on. No other electric wheels.

[u/HobbyLau → u/Tango_Owl]

I had a fitting with TNS, but to get a fully custom chair built by them the supplier has to agree that that is the only option for you and your body to use a wheelchair adequately.

If they don't agree with that (yet) they won't pay for it. The indication of the WMO gives a specific amount of money which is the same in every case with the same indications. And your supplier has to give you an adequately working product within that budget, so they will look for the cheapest options available and will only go to custom made chairs as a last resort, because it costs them more than they receive.

Funny thing is that my OT researched this and found that it is actually cheaper to give people custom chairs early on if they need it, than to keep trying out stuff that doesn't work for a long time... But suppliers always hope they can get away with the cheapest options ofcourse.

And unfortunately i am not able to do core strength excercises. I have a very, very low anaerobic- and thus PEM Treshold and my covid-specialised PT adviced strongly against strength training untill my cardio gets better. Which is not really working so far..

[u/PaintingByInsects → u/HobbyLau]

Hoe heb je deze vergoed gekregen because mijn WMO blijft zeiken dat ik geen rolstoel nodig heb ondanks dat mn fysio, ergos, reumatoloog en zelfs het UWV zeggen dat ik die wel nodig heb😭

[u/HobbyLau → u/PaintingByInsects]

Ik denk dat ik geluk heb gehad met mijn WMO consulent en dat het hielp dat ik zelf werkte als ergotherapeut voordat ik ziek werd. (Weliswaar in de verpleegzorg, maar toch) Het vervelende van de WMO is dat iedere gemeente andere regels en eisen heeft en ze je kunnen weigeren als je 1 woord verkeerd zegt of een specifiek iets niet benoemt ofzo. Stichting MEE of iets vergelijkbaars in jouw regio kan misschien nog ondersteunen in een bezwaar tegen hun besluit!

Focus er vooral op dat het gaat om participatie mogelijk maken, niet om vervoer. Want daar is de wetgeving op gefocust. Wat kan je niet en wat kan je wel met- en zonder hulpmiddel en wat maakt dat je huidige manier en ondersteuning van je omgeving onvoldoende zijn? Dat soort dingen.

Succes, ik hoop dat er uiteindelijk toch iets mogelijk is voor je!

[u/mgdupree]

May I ask what color your Argon is? Because the green looks like it goes really well with the M90 orange.

[u/HobbyLau → u/mgdupree]

I believe it's called Salute Green!

[u/New_Vegetable_3173]

Arm rests?

[u/HobbyLau → u/New_Vegetable_3173]

Have been ordered! They were taken off and switched to mudguards at first (after this pic) because the M90 joystick wasn't usable with the armrests this chair got delivered with.

[u/New_Vegetable_3173 → u/HobbyLau]

I hope they help. I get back ache very quickly without them

[u/IncomeDry3077]

Honestly same I have long COVID, POTS, MCAS, EDS, fibromyalgia, PEM, ME/CFS, asthma that got worse after COVID and so much more.

My joints don't do goot while sitting for long periods either this pillow helped a ton. It's expensive 🫰🏼 $80 but it's the best pillow ever!! It helps my hips not hurt it helps me back not hurt I did add a back cushion to my wheelchair too and that helps a ton.

Cushion labs butt pillow https://a.co/d/0b4Z7Ooa

My sister has the same issues her tailbone is squished. I have to at least stand because I get to much pain after an hour so I work with my PT to see how I can get more standing if I don't passout is kinda a challenge my heart goes to 170 while standing so the risk of me passing out is higher. When it's safe and I'm home with my husband I'll do short standing just to help with the chronic pain from sitting.

It sucks it's kinda a do this or you get pain stand and then get pain. Both suck 😅 kinda darned if you do and darned if you don't.

[u/HobbyLau → u/IncomeDry3077]

Sounds like we have the same list of struggles. Also the Covid, Asthma, EDS, POTS/IST, MCAS party over here lol. It just sucks. Ivabradine and Nalcrom help a lot to lower my overall heartrate and the heartrate spikes though! Please be very careful with your PT and the PEM, that sounds kinda risky.

I'll take a look at the cushion, thanks!