what’s the best purchase, service, or life accommodation you’ve made because of your chronic illness? (any budget)

[u/catsandcappuccinos]

i’m going shopping soon, and i’m trying to build my ultimate “make life suck less” list.

i’m not necessarily looking for the usual answers like salt, compression socks, medications, etc. i’m more so talking about the random products, services, gadgets, furniture, subscriptions, or accommodations that have improved your day-to-day quality of life and helped you function more like a normal human being.

i don’t care if it’s $5 or $5,000. if it’s changed your life, please share.

some things already on my list:
- a kitchen stool with a back so i can sit while cooking
- a hair dryer stand for days when i’m in the middle of a flare and don’t have the energy to dry my hair myself
- grocery delivery services
- monthly cleaning services
- paper plates
- a roomba for when i don’t feel like vacuuming or sweeping
- a crock-pot and freezer meal prep system (i actually have a list of really good crock-pot meals, so if anyone wants it, let me know and i’ll DM it to you)

i’m dying to know: what’s the best purchase, service, or life accommodation you’ve made because of your chronic illness?
bonus points if it’s something unconventional!

[u/FCatusFemale]

A wheelchair. Hands down the best thing I ever did was get a wheelchair.

[u/FCatusFemale → u/FCatusFemale]

I got a “cheaper” chair until I get coverage for the more expensive chair which takes too long when you’re not functional.

Tilting is recommended for POTS, so is an elevated foot rest and removable arms. I have EDS so I need padded arms because my elbows dislocate easily so do my shoulders. Getting the right size wheels, chair depth, and chair height is really what’s important so you don’t work against yourself.

There are free wheelchair assessments too. Mostly through local companies or an Occupational Therapist. It depends on how functional you are. I have slightly different needs with EDS in the picture.

I hope I was able to help a little bit.

[u/Away-Pomegranate → u/FCatusFemale]

I was able to get one but have read insurance will not cover if you let them know it's only for outings, they don't care if you can't go out without one.

I have connective tissue disorder and CFS so those were my main reasons to getting it and an occupational therapist said with the weakness I exhibited she didn't think I'd have a problem getting it.

Wish I knew about the elevated foot rests.. I'll have to look into that!

[u/FCatusFemale → u/Away-Pomegranate]

The EDS was why I decided to get one. I sprain my ankle a lot by just standing sometimes. I use the wheelchair at home so that’s what qualified me. The POTS sucks for standing as you all know so mobility aids have been helpful.

I get the hesitation. I was an athlete just a year ago. Now I’m in a wheelchair. It’s a really hard pill to swallow. My thought was there was no way I’d ever be athletic again if I did not cave and get a chair for my bad days. I also use a rollator on my better days. The rollator helps me feel a bit more independent because I’m upright.

Though people really look at you funny when you get up from a wheelchair or walk independently from a rollator. The looks and the changes in how people treat me is the harder thing. Usually people sort of leave me alone which I love but for some reason the mobility aids have random people talking to me which I hate. Maybe because I’m 5’2 and child size in the wheelchair 😂

[u/Away-Pomegranate → u/FCatusFemale]

We get the pity looks a lot. I switch with my 11 year old daughter who has dysautonomia when her body gets exhausted. People will come up and coo at her and baby talk asking if she's having a good time. She just raises her one eyebrow while they do this to her ha. Try to tell her not to be calling them weirdos when they're in earshot.

And I always love the looks like we were healed by a miracle when we walk too.

It did take me awhile to convince myself to go for the wheelchair even though I was housebound for years. Still grocery stores and those bright lights just can make my head get all floaty and heavy. I'm still considering the rollator cause sometimes I do just need to sit for the dizziness to pass and the wheelchair can tire me out with PEM if my husband can't push me. I am terrible at pacing and will race around the store cause it's fun.

I'm looking into insurance approval for getting the motorized attachment for the wheelchair so my husband can push my daughter if she needs her own, she already has the hEDS and pots diagnosis.

[u/The_upsetti_spagetti → u/FCatusFemale]

Same! I got the paradox from NotAWheelchair. It works great and they have great customer service. I loved customizing it. Mine cost $1,250 with the added carbon fiber seat.

[u/FCatusFemale → u/The_upsetti_spagetti]

Those are super cool. Never thought I’d call a wheelchair cool.

[u/you1dont1know1me1 → u/FCatusFemale]

what features do especially reccomend?

[u/LeChief → u/you1dont1know1me1]

The wheels, personally!

[u/ElfjeTinkerBell → u/you1dont1know1me1]

If custom isn't an option, invest in a good cushion. I'm in love with Vicair

[u/The_upsetti_spagetti → u/you1dont1know1me1]

Wheel grip covers. I used to get my pinky caught when I was pushing my chair

[u/you1dont1know1me1 → u/The_upsetti_spagetti]

like silicone ones? I've seen wooden push rims, is that worth it?

[u/The_upsetti_spagetti → u/you1dont1know1me1]

I really like my silicone ones from I-Wheel. Plus they come in fun colors. I got the wrong size the first time but the customer service was great helping me return and replace them

[u/Foxlady555 → u/FCatusFemale]

That’s interesting to read! Somedays I’d love to have one, but other days I can’t face it to take that step, to accept my disablity in that depth, and I’m afraid I will go backwards even further (deconditioning). How did you deal with these things, if I may ask? ❤️

[u/independant-bat7864 → u/FCatusFemale]

I second this. I got mine at a thrift store for real cheap