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New house I don't think I deserve. This coming from someone who grew up dumpster diving for food, living in the semi my dad drove who later fights the urge to hoard. My dad and me. As soon as we close on the house I want to spend the night by myself to adjust. I usually stay on my bed and don't leave the room due to triggers and anxiety . Going from this I want to go minimalist with my things. I don't know how my wheelchair is going to handle the carpet. I may just sit and spin but I'm hoping not. Nothing is going to be in the house,no power,water,or ac. No help if I need it. I'm excited and terrified but it's a new beginning to the next chapter of my survival. I say survival because that's simply more of what life is for me. I struggle every day with pain and that in turn pushes me towards a depression spiral. I haven't been by myself for over 2 decades. I've tried to be a good mother and a supportive wife. Now I have an empty nest and an irritated husband.(This is my journey though so he can just deal. ) I'm struggling with the hoarding so I thought I could get a feeling for the next step by basking in the nothing of an empty house. It'll give me time to find out what I can live without. If it's unused in the past 6 months it goes... unless it's brought me joy. Not much has except holding my granddaughter. Right now that's all hope because the in laws we're selling the house to got evicted and are living with us. The last time they lived with us both me and my husband tried to end our lives(at different times) so this may just be the beginning of the end one way or another. Stress and boundary issues and constantly being reminded of me being worthless (in such a way you can't say stop without proving them right) We haven't closed on the other house yet but the words "What kinda person do I want to be?And people change." Kept me from saying no they can't move in yet. So far so good after a month. As long as I hide as much as possible I can't get dragged into anything. Sometimes being a good person is risky but I won't change that about myself. I can take her losing it on me if it happens. What I can't take is staying here so as soon as we sign the contract I am running so it stays peaceful between everyone. I can't help it if my choices make anyone feel bad. I can only control how I feel, what I chose is going to be the best option for me.....and being by myself may be all I need. Is my husband going to like this, well no of course not, he's going to feel like I'm running from him no matter how much I tell him I'm not. He's just as much in low self-esteem as I am. But after the first night he can bring a sleeping bag if it helps him. If I don't do this I will never know if I can ever understand being a bit independent. I need that, just once because I have never been in my own place without kids or in laws living with me. One night. I can do that, right?

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Community Voices

Struggling. I need some encouragement. 🫂💜

I went to physical therapy today for the first time. I've been in a bit of a denial how bad things got. It's finally setting in. I'm truly disabled. I have struggle to walk and use my hands. I think I need to change my lifestyle a bit and need to ask for help from family and friends. This is a scary and frustrating time for me. I have 4 young kids and I can barely manage through the day. Basic tasks take so much energy and time and I get exhausted so quick. My husband ends up having to do alot. I was away for 2 months at a treatment center less than a year ago. This is just too much. 😞 #FunctionalNeurologicalDisorder #Disabled

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Community Voices

Trouble walking again and so scared of what people will think or say to me! 😟

I'm having trouble walking again and it scares me. Will I be believed? Will ppl think I'm faking it? And if it comes to that, will they say I'm not disabled enough to use walking aids? Especially with FND there's already a stigma that it's all in my head. My MIL is not supportive of me and thinks there's a quick fix if I just went to better therapy. That's not how this works! I'm in such a panic which is making my symptoms even worse. How will my kids take it? I'm so afraid! 😟 #FunctionalNeurologicalDisorder #Disabled #Anxiety

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Community Voices

Coping through RPGS

I never really put two and two together, but something I have realized recently is that I tend to heavily throw myself into the RPG games that I play in/run and I figured out why, besides them just being fun and an amazing way to bring out one's imagination.

I like being able to be someone else.

I enjoy being able to do things that I can't do as myself (dice permitting of course). And I don't just mean the fantasy, magic elements of the game. I mean being able to run. Or swordfight. Or hell, being able to walk more than a block without being in incapacitating pain.

It truly is an escape from myself sometimes and I have realized that my characters don't necessarily need to be physically strong to be 'heros'. So, as of late, my characters I've created have begun to have similar struggles to mine. My current favorite character that I play is a member of a winged species, yet they cannot fly due to malaligned bone structure and muscle atrophy in their wings. But guess what? They're still kicking butt left and right.

You don't have to fit in to what society deems as "strong" to be amazing in your own right. And if I learn nothing else in the years ahead from RPGs, I will still be satisfied and happy from knowing that

-Aisling

#ChronicPain #Disabled

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Community Voices
Community Voices

My journey of 3 years and still no end

A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
An aftermath that is not yet completed.
In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
Lung function tests showed I had little breath and wheezed and panted and coughed.
But no reason could be found.
After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
But still, my oxygen levels overnight are too low.
And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
I have #Hypoxia but how is it caused?
No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!

Community Voices

This past weekend - Friday June 24th - I got to see Halsey at the Shoreline with my two best friends. To be clear, Halsey was AMAZING! But the venue was shitty...

I was prepared. I brought my handicapped placard and researched the venue before going. I purchased tickets online that said handicapped accessible tickets with a companion so I got the seat with a handicap and companion seat and also the seat next to the companion - three tickets in total. A week before the concert I checked again to be sure there was handicap parking and indeed it said handicapped parking available.

The day of the concert we got to the venue, and parking was a mess. We asked eight parking attendents where handicapped parking was, and they just pointed - and didn’t say anything. We finally parked but it wasn’t handicapped parking. The parking lot was uneven and gravely and not paved, which is kinda difficult when you're in a wheelchair. We got out of the car to assemble my wheelchair.

We had to walk a little ways to get to the venue. On our way over, we saw the parking lot where all the handicapped parking was. Austin asked one of the staff members if we could park there and she said yes just ask one of the shuttles to shuttle you back to your car and put his hazard lights on. But, once Austin got his car but yet another staff member said he couldn’t park there, and made him go back to his original parking spot. It was confusing and disorganized, as if people at Shoreline aren’t used to disabled people coming to concerts with their friends at all.

If people get treated like I did, that’s kind of not surprising.

We got to the venue and they wanted to do a bag check - including looking at the bag where I carried my catheters. It seemed like too much of an invasion of privacy, so I left the bag in the car… It turned out that the bathrooms (porta-potties) weren’t wheelchair accessible anyway… even though they were supposed to be.

We got to the gate to scan our tickets. I asked where the accessible section was. They just pointed and said on the other side of the theater. It turned out that the seats we had that were supposedly handicap accessible …weren’t. My friends Austin and Brooke talked to one of the staff and told them the situation. The staff member looked obviously irritated, pulled all three of us aside and radioed her supervisor. Austin was still talking to the staff member still telling her the situation and then she made a finger gesture telling him to be quiet.

Her supervisor came and after hearing the details, she looked at me and asked, “Can you walk down eight steps?” I said no. Then she asked “What if one of your friends carried you down?”

I …couldn’t even believe they asked me that. I was born with a birth defect. I have spina bifida. My spine was formed outside the skin, and my nerves weren’t formed in my legs. Right after I was born, doctors had to put my spine back into my body. I can’t feel below my knees, so I'm paraplegic. I don’t expect strangers to know my whole history but… I was in a wheelchair and I bought handicap accessible tickets. Why was she asking me that?

I turned and looked at Austin and Brooke and I just shook my head.

The staff lady rolled her eyes and sighed. Then she said, “Let me see what I can do.

Eventually we got to our seats, and they were accessible, but they were segregated off in the corner.

And I don’t know how I feel - maybe disappointed? It's a RARE moment when I’m feeling really good about navigating as a disabled person in public spaces. It is also RARE to get to hang out with my best friends. I go to dialysis three times a week, and right now I don’t work, so the tickets were an expensive treat. Most of the time I’m feeling tired and sh*tty, but on Friday, I felt good - it was going to be a good night.

And Shoreline ruined it.

…But Halsey was AMAZING!

Community Voices
Community Voices
Community Voices