the struggle to ask for help /cravings as communication

We have a real real hard time asking for help- at least for the big important things. and we're scared right now losing leg function and we decided on a powered wheelchair so we can go places again 'cause it sux being stuck and so limited. asked last year and was told we have to save up. asked this year, was told to write down exactly what we want so we researched and did that. and He said then "are you sure you need that? you havent even seen the specialist yet" and it hurt so much to be dismissed like that and gaslit when it was so hard to ssk in the first place. now we are back to saving up... i hope.
so.... scared, frustrated, trapped, hurting.
been gnawing on my cheek pretty hard which is internal flag for alters being stressed or upset. also have been having persistant craving for a specific sweet comfort snack. ran out, toughed it out. craving still there. a week later finally got more... and it unlocked something inside, one of the littles said finally! we've been asking, we dont ask for much. you finally got what we asked for. and it made sense. they needed me to provide and not stall cause we were getting stonewalled in the outside. they needed to know we would be ok and not to give up.
sometimes the craving is a test and a message. be kind.

Hi

Not sure where you are but public places like zoo’s or big nature parks etc often let you hire a mobility scooter or chair for the day so if you can get there you can borrow one…shopping centres/malls often have ‘shopmobility’ service where you can borrow a scooter or chair for a few hours. (some require you to have a driving lession with them first though these days if you’ve never used one before..just do you’re not accidentally crashing into shop displays or running anyone over in a busy shopping area)

You can also get some places to bring a scooter or chair to you to try a test drive ..you can book an home assessment without anyone else there telling you what they think you need or don’t need …(just don’t tell them until after you’ve had it!) many places offer a free home assessment…..

If you tell the the shop you’re not sure as its your first and pick a couple of models from †heir site/catalogue… you can try a few different models..discuss financing with them they often have payment options…if you’re in the UK there’s †he Motability scheme…other countries may have similar schemes under a different name) then tell them you need to think about it (if you’re not sure or can’t afford to buy one right then)

Try a boot scooter, mid sized scooter and small folding chair if you want it to be easily transportable. scooters are easier to steer than chairs… (if fine motor movement of hands is more challenging for you)

they usually have a tiller and waggle control basically you only need your thumb to push it forwards and there will be a dial to control how fast it will move forward…so even if your movements are a little jerky it won’t shoot forwards faster than you intended.

you need more strength in arms though to turn tiller on larger scooters and also keeping your arms out whilst driving… and to be able to possibly take it apart (if you have your own car) get on and off it as it maybe too big for some places… some places will expect you to leave a scooter outside (eg a small cafe) so they’re good if you're semi-ambulatory ...eg you can walk with a stick/crutches..just can’t walk far

Big outdoor road-legal scooters will have higher speed limit of 8mph (12kph) …

Some can be bought with throttle control that go up to 15mph (24Kph) …in some countries these may not be recognised as 'mobility aids’ and instead legally in the same category as electric bikes/2 wheeled e-scooters or mopeds etc so you might need to check the rules for your country on road use/indoor use in public places.


Power chairs

A small basic folding powerchair …they fold down like pushchairs ..you have to remove the batteries first but then they are lighter to lift into a car boot or the back seat of a car.the batteries are often lithium (some smaller scooters are too) so are lighter and can be charged off-board (ie you can leave chair folded up in your car to just use for going further afield and just take the batteries in the house to recharge when you get home). …

if you don’t drive and will be needing to take a train or adapted taxi (or access bus service) frequently …make sure the chair has ’taxi tie down points’ on the chair frame as they legally have to clamp/tie your chair down for you to be able to travel in it. again some countries regulations are stricter than others so check what’s allowed where you are …

you can get 'aircraft friendly battery packs' ..if you’re in a country where in-country flights are needed more than in much smaller countries or you just want to be able to go abroad/out-of-state for an holiday (if it was just for holiday away maybe easier to hire at the other end just for the holiday) These usually don’t have as large a battery range though.

standard controls are a joystick with 8 way directional control. (think of a compass. N, NE, E SE S etc)
There is usually a speed limiter button so as with the scooter you can limit the fastest the chair will move when you push joystick in any direction. Indoor and Indoor/outdoor (smaller compact) chairs often have a limit of 4mph …


RWD (Rear wheel drive - biggest wheels at back) - are more stable they often have larger front castors too and are better where you have to manage some outdoor areas than maybe not be ‘wheelchair-friedly ie competely flat/level)..available in lighter folding models and also more heavy duty (8mph) non-folding models…larger models are not so easy to turn in really tight spaces.

FWD (Front wheel drive) the chairs tend to be really expensive, and the back end tends to ‘fishtail’ (swing from left to right) at the higher speeds as all the weight is at the front of the chair. Non-folding highest speed usually 4mph (6kph)

MWD (Mid Wheel Drive). big wheel in middle smaller castors front and rear (6 wheels in total) turn on a dime.. great for really tight spaces… perfect for indoors with a seat riser to reach cupboards/shelves etc inside a small flat, shops if you can’t stand and keep your balance to reach for things..useless in the great outdoors! Non-folding 4mph (6kph)

From our experience of mobility varying from wheelchair-dependant (even to get from room to room in our house) to semi-mobile we find

Scooters -

unless you have either a large adapted van to drive it straight in or some one to help you they are better for getting around local neighbourhood if you have a large mall close by or have a dog to walk daily over uneven terrain

if you live in an area where there’s no pavements the larger road legal ones are safer and you’re also higher up (seat) for cars on the road seeing you on the road.

Larger ones have bigger car type batteries with on-board charging only (can't remove batteries to charge) and have to be charged indoors (or in a garage) they have a much larger range though again depends on terrain and also things like temperature - you won’t get as much range out of batteries if its freezing cold outside, but they’ll be able to handle light snow to get your dog round the block kind of thing! …simarily if you live in a really hot climate …batteries can overheat .. be careful where you park it if leaving it outside a cafe etc if its boiling hot out!

Boot scooters tend to have really small battery range to start with so driving anywhere with loads of hills, kerbs to go up and down (use weight has to be taken into consideration too) you don’t get much out of them … ok to keep in car boot for quick trip round a shopping centre or supermarket where its all flat inside.


Chairs

more compact for smaller public spaces - cafe’s shopping centres, going to concerts, college, work offices etc

useless for fields unless its really flat, short grass and level (eg a car boot sale on a well kept school/ football/cricket field)

thank you Shadowlands! lots of good tips. We already made a whole spreadsheet and narrowed it down. We are semi-ambulatory and use a cane or manual chair or portable tripod stool as needed. Just found out our knee damage got WAY worse recently and our knees got no cartilege left. And we have limited stamina to use the manual chair.
went looking for all terrain weatherproof chair that can handle 300 lbs or better, that can fly and travel with, fits my big butt, and fits in the back of a Kia.
Yeah, all that amd a pretty pony. right? actually found some tho but none of the folding chairs are covered by insurance yet so its 3000-5000 cash.
we are living in cramped quarters with family right now and also trying to save for a shed/studio/tiny home in the backyard.
so my need and his need are both big and cant do a lot yet.
the cravings seem to tie in with stress about scarcity and/or not getting needs met. have to reassure the littles and some hidden bigs that we dont have to shut down and tough it out. shame, despair, cynicism, unwillingness to trust or hope. tHost trying to reassure and maintain basic optimism but honestly there are no guarantees.
and somehow the doc wants me to lose 1/3 of my bodyweight before they can fix my knees. systrm is not not stable enough for any drastic measures so figured out some baby steps to try that no one seemed to kick up a fuss about .

Verdandi wrote:thank you Shadowlands! lots of good tips. We already made a whole spreadsheet and narrowed it down. We are semi-ambulatory and use a cane or manual chair or portable tripod stool as needed. Just found out our knee damage got WAY worse recently and our knees got no cartilege left. And we have limited stamina to use the manual chair.
went looking for all terrain weatherproof chair that can handle 300 lbs or better, that can fly and travel with, fits my big butt, and fits in the back of a Kia.
Yeah, all that amd a pretty pony. right? actually found some tho but none of the folding chairs are covered by insurance yet so its 3000-5000 cash.
we are living in cramped quarters with family right now and also trying to save for a shed/studio/tiny home in the backyard.
so my need and his need are both big and cant do a lot yet.
the cravings seem to tie in with stress about scarcity and/or not getting needs met. have to reassure the littles and some hidden bigs that we dont have to shut down and tough it out. shame, despair, cynicism, unwillingness to trust or hope. tHost trying to reassure and maintain basic optimism but honestly there are no guarantees.
and somehow the doc wants me to lose 1/3 of my bodyweight before they can fix my knees. systrm is not not stable enough for any drastic measures so figured out some baby steps to try that no one seemed to kick up a fuss about .

The light folding chairs will have a lower weight limit also…. if you already have a manual could you use that at the airport and ask for assistance? …and hire one at the other end?

Another option as you already have a manual chair…. you can get battery packs to add to a manual chair and turn it into a powered one…. you usually get two powered wheels that you replace your regular manual wheels with then connect the battery pack…. and a little joystick.

This would be much easier to get in a car as removing the wheels and the battery pack will also make the chair much lighter to get in the boot if needed..and you can always buy an extra battery pack so if one goes flat you have a spare…. there’s also a switch to disengage the motors in the wheels so it cna still be used as a manual chair if you got stuck outside during a breakdown. …less anxiety inducing if you know you can switch it back to manual for someone to push you if needed.

maybe ok as an interim chair so until you can get insurance sorted to get a more robust outdooor chair..you;d at least be able to get to places such as shop, doctors office etc easier.

I don't think we’re allowed to post links here but look online for ‘power assist for wheelchair’ to see them. Again can ask companies for an home demo to see how one works then ask if they have any ex demo models or they maybe able to see if your insurance would cover it for you?
I’ve seen them on eBay too before. Maybe a cheaper interim solution just until you can see how knee surgery goes and also give you more time to save up for a better chair if still needed later?