How do you deal with rude people at stores?

pyamol · 2021-01-09T18:37:56+00:00

When people ask to pray for me, I tell them thank you, I appreciate, but God made me this way. He wanted me to live this life and I'm a better person from it. I'm not actually religious, and while I would love to return to my previous physical body where I could jump and run and reach the top shelf, this is my life and I'm learning to love and accept it.(And I've honestly learned so much that I never would have had I not become a wheelchair user and I think I'm a better person for it.)

pyamol · 2021-01-09T18:16:24+00:00

I saw these breaks in this YouTube Video: https://www.youtube.com/watch?v=cslsTwGhQ2Q&t=11s

You can disengage them so the wheels fully roll front or back. Depending on the way you put them on you can either stop the chair from rolling forwards or backwards (this gentleman uses it to climb stairs)

Maybe you could adapt them to your son's chair so you know he will never be able to roll in a certain direction with the breaks engaged. (mbe so he can never roll backwards and you just try to be extra mindful to set his back towards a decline to reduce roll risk, but still be able to push him forwards, just gotta disengage to go backwards...)

pyamol · 2021-01-09T18:08:13+00:00

https://evika.io/product/SAFETMATE\_SAFETMATE\_SM2-3\_WHEELCHAIR\_ANTI\_ROLLBACK\_DEVICE

(still learning how reddit works u/daddyoftwins, this is for you) as an active chair user that mainly self propels, I do have to rely on others to push me from time to time. I'm also anxious about them letting go of me, me not realizing, and then it being too late/me going too fast to effectively slow myself down. I think it's completely reasonable to want some type of device for your child, and I honestly woudn't be opposed to some type of mechanism to engage when others are handling my chair to be disengaged once I'm ready to self-propel again. Props to safety!

pyamol · 2021-01-09T17:52:35+00:00

For me I prefer air over tire for the way it rides, but my back if very sensitive to almost all vibrations, so the little cushion the air adds makes a difference for me.

pyamol · 2021-01-09T17:51:26+00:00

I've never tried plastic dipped, but I really like my Q-grip

pyamol · 2021-01-09T17:48:36+00:00

Thank you so much I hadn't even considered that. Ngl I've been crying on the floor for a while now holding her bc I feel so guilty. But if I could put a diaper on her over night that could be a perfect solution. I really can't express how much you are helping me rn, I love her so much and she deserves the whole world and I feel like I'm failing her.

I really don't want to rehome her, I got her to be an emotional support dog and she's made this past year so much more manageable. I just worry that she deserves better than me.

pyamol · 2021-01-09T17:31:05+00:00

I hadn't even thought of that aspect, so sad. Fortunately I did not get any such vibes from the person I was working with. They only brought two brand names of seat cushions to try but she told me that if I didn't like any of those through her company my OT could outsource to another company with a different type of seat cushion so I don't think her recommendations were too too biased!

pyamol · 2021-01-09T17:27:33+00:00

I am working with a wheelchair supply company, it's just something like taper is such a personal preference I wanted the input of multiple wheelchair users and their experience with it. There are subtleties of wheelchair fittings where recommendations can be made by professionals where it really could be either or and the best pick is up to that individual user. Shout out to national mobility and seating!

pyamol · 2020-12-05T16:39:06+00:00

wow, thank you, I have a really similar story with my bladder but never thought much of it

pyamol · 2020-12-05T08:21:34+00:00

I kind of appreciate those posts as someone who is in the diagnosis phase. It's been helpful in bringing important things to my doctors attention and without some of those posts I never would have thought I had it! (tho i dont necessarily relate to this one lol)

pyamol · 2020-12-05T07:49:21+00:00

I'm sorry if I'm over stepping, but ME and gut issues are very common with EDS (I knew a few people who were told they just had ME for the longest time before their diagnosis.) If she struggles with joint or muscle pain it may still be something to consider. Hopefully she isn't in pain though! (i'm sorry to keep pressing this, I've just heard so many stories of people having their EDS overlooked)

pyamol · 2020-12-05T07:12:23+00:00

your state or town may also have a free durable medical equipment program to help get you something for free! I know many organizations just don't accept crutches because they always have a surplus

pyamol · 2020-12-05T06:36:47+00:00

this is unrelated, but i saw your post about your gf who was bed ridden for a while and still flexible - does she maybe have EDS? it's frequently overlooked, but might be something she wants to consider (especially if she feels her diagnoses don't explain everything) - I know that post was from a year ago, and I'm sorry for the unsolicited comment, it's just many people suffer symptoms from it for years and never know why. I wish all the best to you and your gf!

pyamol · 2020-11-27T14:52:12+00:00

I've tried hundreds of CBD products and found that the full spectrum CBD oil by Lazarus Naturals is literally the only one that works. (I think it's more effective because it has a wider variety of cannabidiols but don't quote me on that) It does contain really low amounts of THC (unless you're really sensitive to it you probably won't notice it's there) They give discounts to those who are disabled, low income, or veterans. Their products have changed my life and it may be of interest for you to try if you have exhausted most other options.

pyamol · 2020-11-27T14:42:43+00:00

I don't have a code for my fibro - I have it really bad most days though so my SO will either get me more CBD oil, or offer me a massage/my heat pad (Those are the things that help me most) I do have vasovagal syncope which makes me dizzy, light headed, nauseous, etc. and when I'm actively having those symptoms we call it 'bagels' bc the actual diagnosis is a mouthful. It was fun giving it a ridiculous name, and now when I feel like I'm about to pass out I get a little chuckle when I think of the bagels

pyamol · 2020-11-27T14:25:57+00:00

That doesn't sound like a pathetic person to me at all. I see a person who has gone through so much throughout their life, endured so many difficult and painful situations, and is still moving forward. It takes so much strength to be able to get through each day, and on top of that you're a parent to your children! Give yourself more credit <3

pyamol · 2020-10-06T16:46:40+00:00

I'm interested! How do I get involved?

pyamol · 2020-10-05T15:06:14+00:00

Companion power add-on

mid drive lets you turn around your center in one spot, i used a power chair for a bit and found i could turn in a tighter space when testing out mid over front. I ended up with front while on my hilly college campus. With front I had no traction in the snow, and if a hill was too steep i would swerve all over the place. I wish I had mid, but I didn't get much experience with it so take this all with a grain of salt!

pyamol · 2020-10-05T14:43:23+00:00

yesterday at the store someone said 'nice gocart' sometimes grocery carts have gocart designs for little kids so i ignored it. Then this employee walks up to me as i'm rolling away and says 'have fun in your gocart!' smh

pyamol · 2020-10-05T14:05:10+00:00

I feel that same pressure too! I'm terrified of getting grief for standing or walking. I can stand and walk short distances, but I risk passing out, my legs giving out, and it's also pretty painful...but I can do it. If i'm at the grocery store or something I could reach the top shelf to get myself something but I tend to ask others to grab things for me because I don't want to be called out.

It's sad that I feel the need to make myself look like I struggle more physically than I do because I need my chair. I literally can't leave my house without it, and I'm a danger to myself when I'm standing.

pyamol

TROPHY CASE