wheelchair user

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A little check in

Wanted to share how I'm doing today. Legs are sore as usual, just been shopping so am giving my body time to recover, I start the day with about 10 spoons and that took about 4 of them, chores will take up 2 and that should leave me enough to go to wheelchair basketball this evening!

This is my first day trying it out and I'm so excited to just meet others like myself and also get active, as it feels like I'd lost that part of myself between all the doctor trips and chronic pain. I'll definitely keep you guys updated on how that goes, I'm very nervous but hyped to try it out. #WheelchairUser #Fibromyalgia #PosturalOrthostaticTachycardiaSyndrome #ambulatory

Most common user reactionsMost common user reactions 43 reactions 13 comments
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Does anyone still go to concerts? Specifically, people in wheelchairs?

This might make me sound ableist, but do any chronically sick people still go to concerts? Specifically, people in wheelchairs? What has been your experience?

I’m into bands like Motionless in White, Skillet, Bad Wolves, Five Finger Death Punch, Disturbed, I Prevail, Starset, Breaking Benjamin, etc… I just wanna know what people’s experiences were like at these sorts of concerts, for an ambulatory wheelchair user?

I can walk around and whatnot but standing for long periods of time is a sure fire way to having me end up on the floor unconscious or worse.

I’m asking because I’ve never been to a concert and I have no idea what it’s like, but I do want to go to one eventually, when I have the courage to do so.

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #POTS #EDS #EhlersDanlosSyndrome #NAFLD #BPD #IBS #InterstitialCystitis #PTSD #Diabetes #Migraine #WheelchairUser #ambulatorywheelchair

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I wish he could walk in my shoes #Fibromyalgia #HypermobilitySyndrome #WheelchairUser

I wish Dr. Patel could experience one of my bad pain days. He literally did not give two shits about how much his decision mattered to me.

I've been slowly figuring out the source of my chronic pain for the last year. One of the contributing factors is a herniated disc. I've tried all conservative treatment methods and was finally ready to discuss surgery.

This guy dismissed me because my MRI doesn't match my symptoms. The disc is bulging in the middle and not impacting the nerves on the imaging. The last doctor I saw diagnosed neurogenic claudication in my legs, which explains a lot of my symptoms. Yet Dr. Patel wouldn't even consider surgery. Instead he asked about my A1C and weight. He was my absolute last hope for fixing my back and regaining a little bit of my mobility. Instead, I am facing a future in my wheelchair. If the condition progresses further there could be severe nerve damage. So you know what, fuck you, Dr. Viral Patel. I hope you lose sleep over this decision.

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Finally a wheelchair!

My first wheelchair arrived today and I'm so thrilled. I want to scream it into the world, because it will make my life so much easier and means less pain. I just wanted to share this #happymoment 🤩
#Wheelchair #AmbulatoryWheelchairUser #WheelchairUser #happy #Disabled #Disability #ChronicIllness #chronicallyill #ChronicPain #teenager #disabledteenager

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Food for thought

So I've finally gotten a good gp, they listen and they believe CMT could be a real possibility. I also have EDS and my mobility is really effected. I use a wheelchair outside and a stick inside, now going to a crutch. I just want to know if it's CMT. I have so many symptoms and they are getting worse while many scratch their heads. I've been told by a neurologist is not MS but your reflexes are bad, drop foot, weakness, feeling like water is trickling down my legs and hands, pain and cramps and tremors. I love art but my hands are getting worse. I just needed to vent really. I hope they work it out but I know at 26 my life mobility wise isn't getting better and won't, whether it's CMT & EDS or just EDS... #EDS #CharcotMarieToothDisease #CMT #MOBILITYISSUE #Wheelchair #WheelchairUser #tired

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