Bring your karma
Join the waitlist today
HUMBLECAT.ORG

Blind and Visually Impaired Community

Full History - 2019 - 06 - 02 - ID#bvzry7
10
Having trouble adapting (self.Blind)
submitted by Faded_Night
I was recently diagnosed with a rare visual disease and especially recently I am finding it very difficult to cope. I think I'm starting to lose my peripheral vision and have trouble with depth perception, as well as blind spots and floaters etc. Not many have the disease but from what is known this isn't meant to get worse (clearly not the case for me).

I find it hard to get support for day to day life and emotional support. Finding my way around is getting more difficult and I don't like making the changes being visually impaired is forcing me to make, and I'm even stubborn to refuse things when I probably shouldn't.

Currently I'm in a very fast paced job which I applied for before being diagnosed while the hospital was assuring me it wouldn't be a long term problem, however I have found out this is permanent. I haven't been in the job long but I already believe I'm not able for it (the job is in a restaurant cleaning and serving).

Most of my hobbies I can't enjoy without getting a migraine, and on a bad day my eyes just hurt. I miss gaming, reading, writing and drawing a lot. I'm feeling some pressure from some family and friends to do things I don't feel able for which makes me feel as if I'm a burden or making a big deal out of nothing.

Any advice or sharing of stories would be greatly appreciated to me as I feel lost and alone.
-shacklebolt- 3 points 4y ago
A big thing for a lot of people is therapy with a therapist familiar with disability issues. Losing your vision (or part of it) is a big fucking deal and it's normal to need help coping.

What country are you in? What services, if any, are to receiving or in the process of receiving to help you adapt?
Faded_Night [OP] 2 points 4y ago
I'm in Ireland and I haven't found much, I'm waiting on an appointment with a service to aid people with vision loss but the waiting is a while, I'm very impatient for the help.
Rw0004 3 points 4y ago
Such a big change would always take some time to adapt, but I’m sure many people will attest to the fact that the thought of what you’re experiencing is worse than the eventual reality. You will learn to adjust and find what works for you.

My little one is visually impaired, and probably only has 5-10% vision and after a hard day at school suffers with headaches, so we’ve found some non-visual wind down activities useful. He’s six by the way, so not identical circumstance. He absolutely loves audio books and can independently choose what he wants to listen to with his Amazon Echo.

He also loves films under the ‘disney’ umbrella (the obvious cartoons, but also the marvel ones) as the audio descriptive on the blu rays is second to none.

As for games, although you won’t quite get the full blockbuster game experience there are a number of games for VI gamers, even some for Xbox. The names escape me but a quick google search should help you out.

There is also a company called ‘Remap’ that could probably help you out with some visual aids as well. I saw recently that they provided someone that had very limited vision with what is essentially a VR headset. They configured it in such a way that the whole picture was shown in a small area where they had good vision and gave the experience of a sighted person watching on a 50+ inch TV. Could be worth reaching out as this might allow you to game.

When it comes to work, keep trying, give it your best, and ultimately if you decide that it is too stressful or tiring on your eyes then there are always other careers that you can explore.

Most important thing is speaking to your family and friends rather than remaining silent. If everything looks fine from the outside then they are likely to think that is the case.

You aren’t alone and I’m sure there will be a lot of people here that can help you out.

I wish you the best of luck.
Faded_Night [OP] 3 points 4y ago
Thank you so much for all the advice, I think even hearing this kind of thing helps because everything has been bubbling up in me with no real outlet. Things will probably get better when I accept aids and learn my limitations.
danktress 2 points 4y ago
It’s been almost a year for me (11 months) and I am just now beginning to get to my new normal. At first they said this was probably temporary, and then they didn’t know... and then the hard truth, a couple of months later was that the vision wasn’t coming back. The doctors said my brain would figure it out and adapt with the vision I had left. The headaches would subside and the dizziness would ease up. I remember wanting to scream and rip my eyes out and find a way to undo all of it, to go back to seeing how I used to see. It was a harsh reality to know that I would never be able to see that way again. It’s a long road getting to acceptance (at least for me it was). I felt alone and helpless as I thought I had lost the independence that I loved so much. I kept it all inside and isolated myself.

So 11 months later, Ive done a bunch of soul searching and found a good antidepressant. My depth perception is still terrible but I can work around it. The dizziness stopped and I’m on meds for my migraines. Sure, I still bump into walls and people now and then, but now I can laugh about it. You’ll get there. Just make sure you reach out to people when you need to and know that you aren’t alone.
SpikeTheCookie 2 points 4y ago
Many of us are in the very same situation as you, so we understand the huge emotional and life upheaval.

Here are a couple resources in Ireland.....

​

These 2 organizations in Ireland have counseling and suppport locally. :-)

​

Try: $1

Try: $1
Faded_Night [OP] 1 points 4y ago
Thank you! I've been in contact with NCBI so it's just a matter of waiting, which is actually slightly agonizing despite me being reluctant to need to use such aids.
BlueRock956 1 points 4y ago
Hi, bite the bullet and get yourself the rehabilitation training you need. I strongly recommend attending the Louisiana Center for the Blind. It’s hard, but you need to realize that soon you’ll be completely blind and you would benefit from training now, under sleep shades, so that you may come back from training and retain your employment.
Your rehab agency should help you out. They could communicate with your employee so that they give you permission of taking leave to train, and come back with blindness core skills.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc   •   HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.