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Any advice on how to bear wearing #clothes with #ComplexRegionalPainSyndrome ?

Hi, I have #CRPS in my legs and it's spreading. I also have a bunch of other medical conditions like #EhlersDanlosSyndrome and #PosturalOrthostaticTachycardiaSyndrome and so on. So my current question is this: does anyone in a similar situation have advice on where to get soft clothes that won't aggravate the CRPS or require a lot of maneuvering of my joints which causes problems because of the EDS? Also I'm an ambulatory #Wheelchair user, so I'm seated or lying down a lot of the day.

Then there's the fluffy factor. I'm fluffy (sounds better than other adjectives, or phrases like plus size) and that adds a layer of difficulty in finding clothes. I have some of Torrid's super soft stuff, but the seams still bother me. I've found a seller on Amazon that has bamboo viscose sleep and kinda lounge wear.

The TMI bit: bras are unbearable for my ribs and my skin, but going without is not a great look when you've got fluffy breasts, too, if you know what I mean. And most of the underwear I've tried is terrible, digging in to my groin and causing abrasions that get infected.

Please advise, DM or reply I don't care which. I'm really frustrated with the whole thing.

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My Powerchair Is Coming Today! #ChronicPain #MentalHealth #Wheelchair

My powerchair is coming today! I can’t believe this moment has come in my life. The moment where I can no longer walk long distances…which was a joy for me. I used to walk up to 6 miles a day. Now I’ll be rolling those 6 miles.
I understand that it’s strange to be excited to have a powerchair because who wants to end up in one?

But one has to understand that I’m not excited about the chair itself, I’m excited to be able to leave the house (by myself) and go places without the fear of feeling too weak or in too much pain to get back home.

I’ve done that before…I was in a mall which I had walked to and once I got there I had some sort of episode resembling a focal seizure and I couldn’t walk home. I was confused/afraid and found a pay phone with a phone book (I don’t have service on my mobile) to call a Taxi.
That scared me and that was years ago!

I’ve known maybe even since a teenager that eventually I’m not going to be able to walk long distances. I have consistently felt my body weakening…not aging as people would know it, but weakening…and honestly to not truly have all the answers to why that is scares me.
But I hope my new found freedom will distract me from the daily pain I feel where I can focus on my photography.
Take care Mighty Friends…

39 reactions 13 comments

Grocery shopping in a wheelchair

I'm just so amazed by how lovely and helpful people are when I go grocery shopping. Most places have trolleys that clip onto my wheelchair so I can get all I need, unfortunately some people like to leave normal trolleys there and it's very difficult to get them out.

However, on the positive side, a man helped me to get some things I needed, people always moved out of the way when they could, and I moved out of their way also, obviously, and when I used self checkout, one of the staff helped me put everything back in the trolley.

It's just simple things like that, that make my day so much less hassle and I still leave feeling proud of myself and independent
#Fibromyalgia #ambulatory #Wheelchair #ChronicIllness

4 reactions 3 comments

Why flying is “wheelie” difficult with MD

I am 34 years old with a PhD in Biomedical Engineering. I have MD and use a motorized wheelchair. There have been multiple issues in common with every flight I have been on. The airplane seat height was a significant challenge as I have muscle contractures and transfers are difficult, often requiring 2 to 3 people to lift me. Lavatory access was impossible and no alternatives were offered. The time required to board and for airline staff to load/unload my wheelchair in the cargo hold was also substantial.

During my time in academia, I was severely limited by distance when attending scientific research conferences. The longest distance I traveled by plane was New Mexico to Seattle on a nonstop flight with Southwest airline lasting 3 hours. Once the plane landed, the staff brought my chair to the boarding gate after what seemed like an hour of anxiously awaiting an opportunity to get to the airport bathroom. My wheelchair had to be manually pushed all the way from the bottom of the plane to my location. Keep in mind power wheelchairs can weigh 300+ pounds and cost $30,000+. Somehow my wheelchair technician back in New Mexico helped us reset the wheelchair.

On a spontaneous weekend trip to Los Angeles, I flew on a smaller United jet. Unlike the Southwest crew allowing me to load/unload directly from my wheelchair, United brought out what they termed an “aisle chair“ which looked to me like a chair for a 10 year old weighing 50 pounds. I was 21+ years old and about 200 pounds! In order to keep me secure in this tiny chair, I was strapped down head to toe which I have to admit made me extremely anxious and a bit claustrophobic (à la straight jacket). After going through this process again to exit the plane, I found out my joystick was broken off the armrest of my chair. The staff found two screws and somehow reattached the pieces. I then once again motored quickly to the nearest airport bathroom.

The bottom line from these stories (like so many others involving people who use motorized wheelchairs) is that is an exhausting and demoralizing experience. I haven’t traveled by plane since 2012 because of these issues and my disease progression. This means that I have to get someone to drive me out of state to attend any disability summit, research symposium, or visit my new nephew (a 20 hour drive!). Why do people with motorized wheelchairs have to be forced into avoiding flying altogether because they are afraid of injury or wheelchair damage? Airline companies must do better!

#MuscularDystrophy #Wheelchair #Disability

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Nervous #EhlersDanlosSyndrome #ChronicFatigue #ChronicPain #AutonomicDysfunction #Depression #Wheelchair #Subluxation #DisabilityTalk

Hi Mighties,

It is 2 am and I am awake and nervous.

Today I have an apointment with my immunologist to find out what kind of inflammatory syndrom I have.

And I get advise about wheelchairs in a mobility aid shop. Guess I need a light chair, and just want to hire(or rent) it to try out whether it is good for me.

My hEDS got much worse within some months. Now I am once again back from hospital cause of a seizure, but I also got a real bad flare. I am just able to get around with bandages and crutches. So I am fed up. I decided it is time for my first wheelchair.

I feel scared But. I got so much inputs from other zebras here and on youtube and from wheelchairusers which are friends or collegues that I feel strong and am convinced I can go for it.

My next aim: going to the zoo by wheelchair to sketch zebras 🦓🦓

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does anyone know if the medline wheelchairs are easy for the user to push themselves?? like when ur sitting in the chair can u push the wheels or do u need someone to move u?? #AutonomicDysfunction #Dysautonomia #Wheelchair #MobilityAids

3 reactions 1 comment