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cinnabunni

572d

Hey friends- So I’ve recently been advised by my specialists that I should consider getting a wheelchair to manage harder mobility days. This is primarily due to fibro and IC, but the CFS certainly plays a role. I use a cane every day but as a 21 year old, I’m struggling with the idea of using a more ‘obvious’ mobility aid- has anyone been through this, or is there any helpful thoughts out there? ❤️

Top reply
    • nettle

      525d

      @nettle update - got a seating and mobility evaluation prescription from my pcp :) waiting to set up an intake appointment with this wheelchair clinic, it’ll be in the new year but i have that to look forward to. i found this clinic through RESNA’s directory - resna.org/Certified-Professionals-Directory

    • RyeRyeBread

      532d

      One of the hardest-yet-most-freeing parts of the coping journey of being disabled - battling with our own internalized ableism (some that we didn't even know we had!) 😅 I felt that way a few months after the onset of my illnesses. I realized I needed a mobility aid, and had easily gotten over that mental hurdle..... For me personally, i had no problem with the idea of using a wheelchair - but I didn't think I was "disabled enough" to use a power chair 🤦‍♂️🤡, even though I knew i wouldn't be able to use a manual chair long term without power assist. I started by renting a shitty hospital chair at the mall. Though I had bad PEM afterwards, the freeing feeling of being able to zoom all over while moving myself started to open my eyes more to how much freedom wheelchairs can bring someone. After that, I was fortunate enough to have a family member with an old lightweight, custom manual chair sitting around, and they let me have it. I tried it out at a store twice, and it was life-changing. I didn't crash/have bad PEM as much as with the shitty rental chair, and i could move myself so well. But i soon realized that my arms burned and ached, my PEM was still way too much after a single 30 min store trip for a manual chair to be an option (without power assist). This is when i researched A LOT.. I accepted at that point that i needed a chair, but was still fighting a power chair of any kind. Then I found out 3 things: • I was undiagnosed, no supportive doctors, and it would take me years to get coverage and support for mobility aids • I couldn't afford a smart drive & a wheelchair • I found the chair conpany Fold&Go I found Fold&Go, and realized that not all powerchairs look or behave the same. I realized that having one in a cool color i chose, with a weight that I could handle (with help mostly but still), wouldn't need a van, etc. - this all made the step into becoming a wheelchair user more digestable. I was housebound at the time, and I was impatient lol I fundraised money, dumped my money I had saved for top surgery even (insurance still paid for it im just in debt more now).... And now I have my chair. I have gone outside so many times, to parks, events, little strolls. I went to Universal Studios in August - i would have died without my chair. When you need them, wheelchairs have the power to give you your freedom back. Once you realize that, they become one of your most prized possessions lol I was anxious in public at first. I have social anxiety to begin with, and now EVERYONE looks at me (or strategically doesn't lol)... But I've found an odd sense of confidence in using my chair 🤔 I am so grateful for it, and what it has allowed me to do, and I see so many other chronically ill and disabled people my age on social media trying their best to be proud, loud and confident in their chairs as well -- I feel proud of myself when I'm in my chair🤷‍♂️ Maybe it's because im outside lol, or maybe its because I know the mental crap I had to work through to get there - idk - but Once your butt gets comfy in that seat, you're golden!! 😂😊 100% recommend going for it. I also recommend testing some out, renting, etc. before a big purchase. If you're able to, renting a chair similar to the one you want/need would help too. Maybe even grabbing a cheap one of FB marketplace/ebay/yard sales and testing it out would help you gain some confidence in and around wheelchairs (you could also go all out and decorate one to help your brain accept it lol, I've seen a lot of people take old hospital chairs and spray paint, draw, etc. all over them for this reason) 100% also recommend following people in similar shoes who are wheelchair users on social media if you don't already. I grew accustomed to seeing people with my conditions using mobility aids on social media first - and then the idea of me using them became easier for me to come around to. And they offer some peer support, to see others dealing with similar issues is always helpful. Wishing you luck! ❤️

      • nettle

        525d

        @RyeRyeBread this is great advice, thank you!

    • nettle

      550d

      i’m in a very similar place! i’m 22 and looking for a power wheelchair. i use forearm crutches anytime i’m out of the house but they’re not cutting it (also exacerbating my hand/wrist/arm/shoulder pain). personally none of my providers have suggested a chair and i have a feeling they’ll push back when i bring it up. usually it’s on us to push for it/do the work to get a chair - and it’s a lot of fucking work! - which makes it feel even more wrong to want/need it in the first place.

      • nettle

        525d

        @nettle update - got a seating and mobility evaluation prescription from my pcp :) waiting to set up an intake appointment with this wheelchair clinic, it’ll be in the new year but i have that to look forward to. i found this clinic through RESNA’s directory - resna.org/Certified-Professionals-Directory

    • GhostTheRoyal

      559d

      I totally get you. I have used a cane and it was definitely easier using that than it is using a rollator. It's so much more obvious and I get so many more looks being a young person with an "old person" aid.

    • wise

      572d

      just do it. you'll feel a million times better, and if you don't start now while it's still an option, your body will make it non-optional for you. that happened to me when I was 20 and I was more embarrassed by how much better I felt than I was using the wheelchair 😭 I fought so hard to use a wheelchair as little as possible and now look at me. going out and actually being able to move around

      • cinnabunni

        572d

        @wise This seriously helped so much, thank you 🥹

        • wise

          572d

          @cinnabunni np! I'm 24 now and I've noticed an actual decrease in my joint pain, especially from the waist down, because I'm actually giving my body a break like it's been telling me to since I was a child. it's 100% worth it

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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