I've been going back and forth about writing this because saying it out loud makes it all feel more real. I think I've reached a point where I need to stop avoiding it and just be honest with myself.
I don't think the question is "Will I need a wheelchair?" anymore."Not anymore," because if I'm being honest, I think I already do.
It feels heavy to admit that, not in a dramatic way, but in a quiet, settling way, like something clicked into place that I wasn't ready to face before.
This wouldn't have even crossed my mind a few months ago. I was always on the move and doing things, and I knew my body would keep up with me. That's just how life was: if something hurt, I would rest and get better. Now it doesn’t feel like that at all.
I have a connective tissue disorder right now, and my body just doesn't feel stable anymore. Additionally I have seizures which make walking a risk even if my body wasn't in chronic pain. My joints don't feel supported, my muscles are always working extra hard to make up for it, and there's a level of pain that never really goes away. Also, the tiredness is so bad that it's hard to explain unless you've felt it. It's not just being tired; it's the kind of tiredness that makes everything I try to do harder. I also have Raynaud's which means my limbs get extremely cold as blood doesn't flow properly or normally making my feet very painful to walk and even numb to the point I trip up because I cannot feel the ground or each step.
At the same time, I’m still in the middle of ongoing hospital investigations, which makes everything feel even more uncertain. I’ve already had an ECG, I’ve got an MRI coming up, and there are still a lot of unanswered questions about what’s going on and how things are going to progress, so it feels like I’m stuck in this waiting period where I know something is wrong but don’t fully have the full picture yet.
While all of that is happening, I’ve already had to adapt a lot of my daily life. I use my cane, I’ve got a shower chair, grab handles, tools to help me reach things I can’t anymore, and even my bed setup has changed so I can manage more comfortably. These things have genuinely helped and made things more manageable.
Alongside that, I’m actively trying to improve things where I can. I’m starting physiotherapy and hydrotherapy, and I’ve already been doing acupuncture, all while managing everything with a bit of a cocktail of medications to try and keep symptoms under control. I’m doing everything I can to support my body and not just give in to what’s happening.
But even with all of that in place, it’s been suggested that I look into using a wheelchair for the harder days, especially when moving at all is painful and pushing through just makes everything worse. That suggestion stuck with me more than I expected.
Because when I really look at my day to day life, I can see the patterns I can’t ignore anymore, like the days where walking hurts from the moment I get up, or the times I avoid doing things because I know the energy cost will completely wipe me out. I plan my days around what my body might allow rather than what I actually want to do, and that shift has been one of the hardest parts to accept.
It’s not just about pain, it’s about how much of my freedom feels limited by it. That’s what has made me start seriously thinking about a wheelchair.
At first, I pushed the idea away because it felt like too much and like I was admitting defeat in some way. I kept questioning myself, wondering if I was overreacting or if I was somehow not “bad enough” to need one, and I worried about how other people might see me.
The more I’ve sat with it though, the more I’ve realised those thoughts aren’t actually helping me. A wheelchair wouldn’t be taking something away from me, it would be giving me options and parts of my life back that I feel like I’m slowly losing.
I also know that if I do this, it wouldn’t be a manual chair. I understand my body well enough now to know that pushing myself around would likely cause more damage, especially to my shoulders, arms, and back, which already struggle. The idea of adding more strain just to stay mobile doesn’t feel sustainable.
An electric wheelchair makes more sense for me because it would support my mobility without putting extra pressure on the parts of my body that are already struggling. Choosing that option feels less like giving up and more like protecting my body long term so I don’t make things worse.
There is still fear there, especially around how visible it is and how people might react, and I know adjusting to it would be a big change.
At the same time, there is also a growing sense of relief when I think about it properly, because the idea of having that level of support and being able to go out without constantly worrying about pain or energy feels like it would give me a level of freedom I haven’t had in a while.
I’m still figuring everything out and waiting on results, and I know things might change as I learn more, but mentally I feel like I’ve reached a point where I can’t ignore what my body is telling me anymore.
I’m not really asking if I need a wheelchair at this point, I’m trying to figure out when it’s the right time to take that step.
Fae
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