What is the hardest aspect of your physical or mental health condition, if you have one?

[calebzz1]

Hello all, just wanted to start a discussion on something that has been on my mind lately.

"What is the hardest aspect of your physical or mental health condition, if you have one?"

For myself, I do not have any mental health conditions but a pretty brutal visual impairment.

I suffer from severe, intermittent horizontal double vision that is highly variable in nature and I'm barely functional overall.

The hardest aspect for my situation is having to mourn my old hobbies such as reading books, playing videogames, watching movies and television.

This affects so much, from relating to others and more.

My personality is also changed, without my aid I am cold and pragmatic.

I just want a cure and care about little else but it is purely altruistic in nature.

If everything goes back to normal, I can continue working, enjoying old hobbies, go back to community college, continue learning how to drive and more.

The possiiblities are endless and I can help a lot more people which is why I'm so focused on this situation.

That's a luxury now and I don't even know what it's like to see single in both eyes, I get "fusion" moments where my muscles work hard enough and I can "will" my eyes to be straight but it's few and far between.

I am a fall risk, live "moment to moment" as I tell providers because my vision doubles in and out like an accordion all day, everyday.

I only get a break when closing an eye or wearing my patch.

Honestly, it gets so bad I have to decide which object is which and I feel like I'm in a survival horror game sometimes.

I swear it affects a person's cognition, speech, movement and everything but the MRI/MRA was clear.

I still can't believe that based off what I go through.

I don't get headaches or pain which makes sense at least.

I also wanted to touch on this point, people don't always understand the extent of my impairment as well and are not empathetic.

I'll list two situations.

For the first one, I decided to head to my local UPS store to ship my frames back since my mom was in the hospital.

Everything was fine, had to bring my translucent patch but it's very finicky and I had to hold it with a binder clip, later found out that I could have tied it up but that was after the fact.

Anyways, on the way back it was super hot outside and I didn't have my bifocals as I just shipped them back.

I knew this, but had to put my phone at arm's length just to see it and was able to call my Uber.

A woman near my location was loudly talking about purchasing condos and just seemed out of touch in general.

Another dude was just sitting there chilling.

Of course, no one bothered to assist.

Anywho, it was like having low vision and I barely saw the white blur of the car.

Thankfully, I made it home safely while hobbling with my wooden cane of course to and fro.

The whole experience was a lot and it demonstrated how impairment makes everything harder across the board.

Next, this is the second situation.

I decided to check the mail yesterday and there was a worker sifting through everything of course.

I asked politely if I could access the mail box as he wasn't near it.

I was clearly struggling to find what key to use as I rarely go out and he didn't even offter to help or anything.

After this, the man gives a look like I was bothering him even though I'm the impaired one.

Homeboy looked like a typical silver fox (gross) complete with being buff and had tattoos.

I thought about saying sorry and expressing that I'm visually impaired but I really don't owe anyone anything in my state.

That interaction was super annoying looking back.

I'm not a people pleaser anymore which is what I realized from the situation and how I reacted.

Anyways, I had to tell my friends recently again what was going on because they think there's an immediate cure to my situation and I can do everything like nothing happened.

One of them kept pinging in our Discord server to play this game I really wanted to try, Sons of the Forest in particular.

He didn't really know how serious the situation is, I've just been dealing with triggers like that and it's just difficult knowing I can't do all of those hobbies anymore.

I struggle so much daily.

I was recently told I have to be half-blind and alternate with either a 0.2 Bangerter foil (special medical patch) or contact paper for a whole year.

This is the only way I can be cured and my spasm alleviated.

I've worked so hard for alternatives which is already explained in my introduction post.

What's ironic is that even though I'm on this site, I have no history of mental health conditions and will not CTB unless the condition becomes permanent.

I try to think broad and be grateful that I can see clearly even with the aid of a drop and people have it much worse.

For example, there's a little girl who is blind that I always see on Facebook but she is always super positive.

Her faith is really strong in the Lord and she is always happy despite her circumstances of being functionally blind at a young age.

I need to get like that but it's hard.

I know that one day everything will be cured but I don't know when.

The whole situation boggles my mind that I have to work so hard for something that should be given, honestly.

I just hate the feeling of not being able to do what I want to do on a given day, it's very annoying but at least I've gained a lot of empathy for people who deal with visual impairment.

I hope you are all having a great day, thankfully I will be able to make a lot of progress next month but July has been dragging after my mom pulled her stunt.

I lost a lot of trust in her after that and just would rather live alone, it's enough just dealing with my impairment on a daily basis.

 

[helencry]

Well the living part really sucks, love to end that bit.

 

[orbit]

For me it would be my reliance on other people. I just cannot function alone, I've tried being independent so many times but it's not possible without utterly ruining my already frail health.

Having good well intentioned people in your life is a rarity and a privilege that I unfortunately do not have, my mother is my primary carer but only performs her caring duties when she feels like it. It makes me feel like a burden, like my life only matters when it's convenient. I am currently working on trying to get placed in assisted living, but until then it's a game of chance wether I'll be able to eat or take my medication each day.

Once I'm able to have better support, I'm sure I'll thrive- but the fact I have to wait and rely on someone to step up in order for me to have a good quality of life is disheartening.

 

[calebzz1]

For me it would be my reliance on other people. I just cannot function alone, I've tried being independent so many times but it's not possible without utterly ruining my already frail health.

Having good well intentioned people in your life is a rarity and a privilege that I unfortunately do not have, my mother is my primary carer but only performs her caring duties when she feels like it. It makes me feel like a burden, like my life only matters when it's convenient. I am currently working on trying to get placed in assisted living, but until then it's a game of chance wether I'll be able to eat or take my medication each day.

Once I'm able to have better support, I'm sure I'll thrive- but the fact I have to wait and rely on someone to step up in order for me to have a good quality of life is disheartening.

I see, sorry to hear about your situation.

I also am living with my mother but after her recent incident she's pretty unstable overall and unpredictable.

I'm planning on moving out long-term once I get benefits and can obtain a housing voucher.

I hope your plan with assisted living works out.

"Once I'm able to have better support, I'm sure I'll thrive- but the fact I have to wait and rely on someone to step up in order for me to have a good quality of life is disheartening."

Yeah, this is really profound and how I feel as well.

A lot of my problems come down to waiting and being patient which is very frustrating but I have learned that apathy is key to an extent.

The less I care about my situation medically the better I feel.

I try to avoid talking for hours and hours while I can do something else more productive instead.

 

[GhostInTheMachine]

I'm trans. Just existing feels like I'm stuck in a house of mirrors of my own identity. Aside from that, for a while I had a nasty skin condition that would cause frequent boils, cysts, abscesses, and carbuncles to appear all over my body. It was extremely disfiguring and painful, and most severe on my face. I have since seen a massive reduction in them as my HRT has slowed my body hair growth (the growths always resulted from infected hair follicles), and I have gotten laser hair reduction on my face which has eradicated them. I still suffer from the mental anguish of being trapped in a body I am not aligned with.

Other than that, I probably have some kinda of post-traumatic stress from my upbringing as I was both physically and emotionally abused, as well as inappropriately touched at times. Honestly though, the trans thing has taken more of a toll on me than anything else.