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

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

19 reactions 6 comments
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This is ridiculous

My grandparents still not understanding my disability after five years bothers me way more than it should. They’re making day to day living so much harder and I’m so done. #Epilepsy #PosturalOrthostaticTachycardiaSyndrome #WheelchairUser #Disabled #severeanxiety #Anxiety #ObsessiveCompulsiveDisorder #ChronicDepression #ChronicMigraines #fml

9 comments
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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.

4 comments
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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

2 reactions 6 comments
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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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Medical gaslighting?

A while ago I read here something about medical gaslighting. When professionals tell you that your symptoms are not medical/physical and don't believe what you tell them is true. And I'm looking for the opinions of other people here at The Mighty.

I've been #chronicallyill since 2007. It started with pain in my back, and then #Fibromyalgia , #ChronicPain and #Fatigue . I live in The Netherlands and found out in Germany that I had the #LymeDisease . My GP (doctor) back then didn't believe me, and said that Lyme couldn't give me these symptoms.

Fastforward to 2020, I've got a lot of labels, and my body started to hurt like hell, so my legs sometimes just stopped working. I went to the Neurologist, but he couldn't find any physical reason for that to happen. I got the diagnosis#FunctionalNeurologicalDisorder , which basiccally means: you've got neurological symptoms, but we don't know what caused it. And the diagnosis #MyalgicEncephalomyelitis , Chronic Pain takes a lot of energy out of me. I've been to physiotherapists and went through a lot of psychotherapy, and got some psychological labels too. I know that I have to take breaks, I know I have to talk about my feelings with my friends. They taught me that excersising or moving my body can't hurt. And all medical specialists told me that the Lyme Disease can't be present, because I had it treated twice.

Now it's the end of 2021, I'll turn 33 soon, and I'm a frequent #WheelchairUser . I can walk small distances, but I have to think about 'how' I take my next step, and that costs a lot of energy. I got new painkillers, but the sharp pain gets right through.

I got all the help I could get from my Uni, where I graduated in 2008, from friends and the municipallity, who got me my (Quicky Helium) wheelchair 5 months ago.

Last week I had a good talk to my awesome GP. She said that she doesn't know how to help me (very honest, I like that), and asked me if I had any more ideas. And if I had the idea that there was any unexplored route. I answerd that I think this is it, but that I really want to find a good pain-management strategy. And I was thinking: all those specialists I saw the last 14 years, all those people who came up with diseases that you can't easily pin down. The specialists who told me I have to live with this, and have to accept it. They all planted a seed in my head that this Chronical illness, that they can't pin down, won't kill me, won't break me down and is something I can grow old with. But is that true, because at the moment every month I can do less things than the month before.

I just realized I might have been Medically gaslighted. I'm the glass is always half full kind of guy, but where do I start from here with my helpful and awesome GP?

3 reactions 17 comments