#spoonie question

[awishandaflare]

Hi everyone! I DESPERATELY need some spoonie travel advice from you all. . So I have pots, eds, Fibro, ibs and other little things, and my mum and I are booking a trip to England to visit her family in September. . I live in NZ, and the longest flight I've been on is 3 hours, to Australia. To England it's roughly 30 hours. . . Firstly, what things do you recommend for flying? Anything to take, any way to relieve nausea, jetlag, Pots symptoms etc. . . Secondly, we have an option to either fly via Singapore or Qatar. . Singapore would make the trip 12 hrs then 12 hrs, with a possible night sleeping in the airport. . Or Qatar would be 18hrs then 6hrs, with wither a 5 hour stop, or overnight. . . I would love to see the culture in Qatar, but my mum is worried about the 18hr flight. . Whereas, I think having one long flight then a good nap would make me more refreshed when I take the shorter second flight, and means I probably will be able to be concious when I arrive in london 😂 . . Which way would you recommend? . I've never travelled like this before, and I wasn't diagnosed woth everything the last time I want to Australia (just ibs). . . ANY advice you can give would be appreciated sooooo much!!!!!!! Xoxoxo

[marieaqua]

I have no idea what this actually is but my skin acts like a patchwork of two different things vs one organ. There’s patches of skin that react differently to skin care products, sunburns/tans differently, and when I eat something I’m allergic to sometimes only those patches will have hives. Even my body and facial hair looks and grows differently on those patches. The only thing I can think of that could be causing it would be EDS but it doesn’t really make sense that it would; does anyone else have something similar? I plan on going to a dermatologist as soon as I have the money and time but I’m curious to know if other people with hyper mobility issues have this as well.

[pots-itively-blog]

Spoonie Question

If you could have had a book to help you on your spoonie journey, your journey of recovery, your journey of acceptance, your journey of hills and valleys…what would you have wanted to be in it?

[teoami]

Spoonie med question

I'm thinking of taking gabapentin if my rheumatologist agrees. Anyone have history with it?

[grumpy-disabled-feminist]

walking around, here I come

So, I went to the physical therapist today. It went really well, they were super nice, and I’m almost devastated I can’t keep going. I get one visit a year, and out of pocket it’s $300 an hour. Like, I seriously think I could probably hire a physical therapist off hours for home visits for less than that.

And the really big news - we tried out all the mobility aids, she timed me, we talked about pain changes, and she wrote a report for my asshat pcp saying that she thinks I need a four wheeled walker with a seat for optimal mobility.

So, I could get an order done, but because I don’t have a diagnosis that explains the root cause of most of my mobility issues, she suggested I don’t fill the order yet, because Medicaid it seems is kind of awful for sick people as apparently we don’t ever get worse, so I can only fill one order every five years. So if I have something degenerative and need a wheelchair in four years, I’m shit out of luck and can just be housebound.

She also said while a rollator looked best, she thought forearm crutches would help too, and even a cane just for balance, though the crutches would be better since I’m tempted to take weight off one side, and she said she’d hate to twist my spine up, as my sacroiliac joint is already a full inch lopsided. So the best thing will probably be to wait at least till I see the EDS specialist and neurologist, to make sure I’m not getting a Dx soon. I can even borrow my mom’s 2 wheeler if they give her an extra one after her hip surgery… {erg, merry christmas, mamma, your kid sucks at waking and remaining upright}

So immediately I might get a cheap cane with an ice tip, since I’m kind of worried about breaking something if I fall on slippery shit or stairs, having once broken a rib in my sleep from rolling over, and it would slow me down in a good way.

I’m also gonna start checking out 4-wheel rollators and forearm crutches. I may buy a pair of forearm crutches as soon as I can save up, because I’ll need them one way or another, and the walker is the only thing the order would be for. So, does anyone have advice, recommendations or warnings about any devices {super especially forearm crutch recommendations}?

[grumpy-disabled-feminist]

question, y'all

If you're disabled and don't work and are an adult, what do you say in verbal conversation when people ask you "What do you do?" or "What do you do for a living?", using those terms?

[thedishranawaywithmyspoons]

Does anyone else get vertigo, but only when lying down? I get it many nights, but in a gentle, swaying way, and only noticible when I'm lying down with my eyes closed. What causes that?

[spooniegoestocollege]

Wheelchair Questions- Please Help!

I've been using a wheelchair for the past few days and it looks like I'm gonna have to keep using it on and off in the future. I have a few questions about things I've been struggling with and wanted to reach out to the spoonie and disabled communities on here. Feel free to reblog and signal boost! 1. I keep shocking myself when I touch something (especially elevator buttons) after wheeling. How do I stop from shocking myself? 2. My fingers are subluxing from pushing and my hands are getting really dirty. Anyone have any tips for keeping my hands clean? Gloves perhaps? 3. What clothes work best when using a wheelchair? My skirts get stuck in the wheels and my t-shirts are bunching up and not looking good. Any fashion tips/suggestions? Any other wheelchair tips?