Blind and Visually Impaired Community
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Feeling like I'm in a bubble (self.Blind)
submitted by AlwaysLilly
Lately, I'm feeling so much more limited by my vision. I am making notes to share with my optometrist at my next visit in a couple of weeks, but wondered if anyone could relate.
My strabismus is making me feel a lot more limited in that, if something is close up (within a couple of feet) I feel fine. The further away something is, the more likely my double vision kicks in and I start struggling a lot. Driving is okay around where I live where it's rural and I can go out for necessities at odd hours, but driving in the city is awful and in general, the more crowded a place is the harder it is. Even with exercising, I'm finding it takes very little to go from feeling normal to almost constant double vision or enough double vision to where I'm so overwhelmed that I just want to sit with my eyes closed.
I'm trying to stay active and do low impact / steady state activities but the last time I went cycling was a nightmare. I cancelled my gym membership because I don't feel the need for the exposure but I hadn't gone in 9 months anyway. I just don't want to become totally inactive because I don't know if a situation is going to make my symptoms flare and I don't want to be a downer for my kids when we plan something fun and I'm struggling to keep up. At the same time, my corrected vision feels great within a few feet of me -- I can work and read without much issue.
My strabismus is making me feel a lot more limited in that, if something is close up (within a couple of feet) I feel fine. The further away something is, the more likely my double vision kicks in and I start struggling a lot. Driving is okay around where I live where it's rural and I can go out for necessities at odd hours, but driving in the city is awful and in general, the more crowded a place is the harder it is. Even with exercising, I'm finding it takes very little to go from feeling normal to almost constant double vision or enough double vision to where I'm so overwhelmed that I just want to sit with my eyes closed.
I'm trying to stay active and do low impact / steady state activities but the last time I went cycling was a nightmare. I cancelled my gym membership because I don't feel the need for the exposure but I hadn't gone in 9 months anyway. I just don't want to become totally inactive because I don't know if a situation is going to make my symptoms flare and I don't want to be a downer for my kids when we plan something fun and I'm struggling to keep up. At the same time, my corrected vision feels great within a few feet of me -- I can work and read without much issue.
Amonwilde 3 points 2y ago
There are a lot of fully blind people who come up with exercise routines. Worst case, you can put on a blindfold. It seems that you are sensitive to your environment and perhaps you should consider setting aside a small room for exercise so that you can't see far while you work. You may also want to put a gauze or light scarf around your head to mimic a more low vision situation so your brain doesn't try to do too much work, essentially using your vision only for not walking into walls. If double vision is the issue and not a focusing issue (it might be a focusing issue) then covering one eye could help. Basically you need to experiment and push yourself, your solutions might wind up seeming kind of wierd, but accept that you have a condition and you can't just do what everyone else is doing and be successful. Double vision is kind of a crummy reason not to work out, try weights and yoga and don't get stuck on thinking about one kind of exercise if it doesn't work out.
AlwaysLilly [OP] 2 points 2y ago
Yeah, that’s true there are a lot of ways to work out.
I thought I’d mentioned it, but I also have ROP so I’m really careful about what I can and can’t do. (Low impact steady state etc) I loved running but gave that up as soon as the RoP was discovered in my 20s. I was doing some weight training but I keep it on the lighter end per my
Specialist as it takes very little to annoy my retinas.
The room idea doesn’t sound bad. Having a static place wouldn’t be as intimidating and the scarf thing could be interesting. I do have a patch that I’ve used for driving before but I wasn’t a fan in that scenario but maybe I’ll try it next time I try going out with the family.
I thought I’d mentioned it, but I also have ROP so I’m really careful about what I can and can’t do. (Low impact steady state etc) I loved running but gave that up as soon as the RoP was discovered in my 20s. I was doing some weight training but I keep it on the lighter end per my
Specialist as it takes very little to annoy my retinas.
The room idea doesn’t sound bad. Having a static place wouldn’t be as intimidating and the scarf thing could be interesting. I do have a patch that I’ve used for driving before but I wasn’t a fan in that scenario but maybe I’ll try it next time I try going out with the family.
danie02 2 points 2y ago
Can you elaborate on ROP affecting what you can and can't do? I'm assuming you mean retinopathy of prematurity. I have it, too and have only ever been told to avoid contact sports. What else do you avoid (or make sure to do, for that matter)?? I'm so curious and hoping I haven't been inadvertently doing something I shouldn't have.
AlwaysLilly [OP] 2 points 2y ago
Yes, Retinopathy of Prematurity. I was advised to avoid high impact. When I asked specifically if I could jog or run, they said I shouldn’t. I noticed if I do HIIT I get symptoms easily so a lot of at home workouts are out. I used to do a lot of yoga and didn’t have a lot of issues with it but it’s gotten worse over the years. I also stopped snowboarding because if I fall there’s too big of a risk that I’ll hit my head hard. Plus with the strabismus I wouldn’t feel safe anymore anyway.
I wasn’t told directly, but I also now avoid things like zip lines and rollercoasters because of the rapid changes. I brought my kids to a bounce house once and got a lot of flashes/floaters after sliding with them but hadn’t put that together.
I’d love to swim more but I public pools are not common near me and the ones that are have crappy hours and aren’t worth the cost.
I assumed no heavy lifting to be over 60 or so pounds. I gauge off what I feel comfortable/get symptoms at. When I went to the gym, I didn’t do deadlifts mostly I stick to machines in the gym and make sure not to hold my breath as the trainer advised against it.
I wasn’t told directly, but I also now avoid things like zip lines and rollercoasters because of the rapid changes. I brought my kids to a bounce house once and got a lot of flashes/floaters after sliding with them but hadn’t put that together.
I’d love to swim more but I public pools are not common near me and the ones that are have crappy hours and aren’t worth the cost.
I assumed no heavy lifting to be over 60 or so pounds. I gauge off what I feel comfortable/get symptoms at. When I went to the gym, I didn’t do deadlifts mostly I stick to machines in the gym and make sure not to hold my breath as the trainer advised against it.
Amonwilde 2 points 2y ago
AH, ROP changes the equation a bit. Something that ocurred to me after writing, more as a hack you could do in a specific situation, would be to pick an object (or place an object) close to you and focus on it while doing your exercise. Like if you got a red ball and put it 6 feet away. Just a thought. I'd also recommend yoga, it's actually pretty strenuous (I know a lot of men avoid it, not assuming either way). Good luck!
AlwaysLilly [OP] 1 points 2y ago
Yeah I used to love yoga but I get really symptomatic so I mostly just use some favorite floor poses to stretch.
My default coping mechanism is using a focal point and it can help a little but most of the time I loose it quickly and have to reorient. Sometimes I can stay ahead of the changes if I have a focal point but once my brain notices say other people/things moving, a lot of colors etc it’s like it can’t decide where to look.
My default coping mechanism is using a focal point and it can help a little but most of the time I loose it quickly and have to reorient. Sometimes I can stay ahead of the changes if I have a focal point but once my brain notices say other people/things moving, a lot of colors etc it’s like it can’t decide where to look.
charliesdesk 1 points 2y ago
Have you ever thought about supplementing with a long cane. They make some really cool cane tips for rural travel and rough roads, they can take care of notifying you of obstacles and drop offs on the group and then you can use your vision to keep your head up. Its just a tool, I know there is a lot of stigma to it, but it could be a missing piece.
AlwaysLilly [OP] 1 points 2y ago
Yeah I’ve been thinking of one for more recently even for just walking because I never know when my vision will be tricky, I’d just never thought it was an option as my vision was “good enough” but I’m going to look into training. I never thought of it for exercise but having that confirmation of what’s in front of /around me etc would be helpful as I already use carts etc a bit like that when my vision gets bad in stores etc.
[deleted] 1 points 2y ago
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