What do you do for fun?

[André Pereira]

What do you do for fun?

Lately I've been very sad with my life in general.
I have had little or no social life.
After the end of my last relationship, I did not approach anyone else.
I got to meet some girls, but I have no courage to bring anyone into my life today.
My amusement lately are playing video games and playing football with friends.
The rest is work. Add money to finish my house and do my treatments for the eye. And researching solutions to my eyes.

My psychologist suggested I find different sources of fun. But honestly, I can not think of anything. I always liked video games, but I can not abuse ... you know ... inflamed eyes. I do gym, but it is connected more to health and self-esteem than fun.
I like music. But I had to leave my classes. My eyes burned and I could not read sheet music in the morning. My guitar is on the wall and my plans of having a band no longer exist.

These are some of the MANY frustrations brought by my eyes.

Today tested the scleral lenses and my eyes were inflamed with them. Over this frustration I thought, my life is still waiting for the healing of the eyes. This healing does not come. What to do then?

I like to hear stories of things do you do for fun! What makes you forget your eyes!

Thanks to those who read this far!
(Sorry for the english)

[LaDiva]

Your English is great, and I understand how you feel. I have decided to learn new things. Photography, writing, and that is enough for now. There are online courses, and I have signed up for three from National Geographic. (No teacher feedback for those, which I miss.) When my writing improves, I will try an online course with students and a teacher! I am cheering myself up by learning new things. My cousin, who is blind, offered to send audio tapes, but I can manage fairly well with these old eyes.

Have you seen the online musicians who live all over the world? They record their part of a piece of music, and when everyone is done, the music is put together. It is a global band. I've seen choral and instrumental music done this way. https://www.youtube.com/watch?v=D7o7BrlbaDs

Finally, the food thing. Eating is fun, and I used to love to eat AND drink! I no longer drink, but after trying Brady Barrow's rosacea diet, discovered there were foods I was able to eat that I did not know I could eat. I can eat BACON!!! Black coffee doesn't bother me, and so I leave the sugar out but add some star anise. Such little things, but they are a big deal and bring much enjoyment. Best wishes to you Andre, and God bless.

[Rebecca Petris]

I love everything LaDiva said!

My 2 cents.

Gotta do what you love. And if you think you can't, find another approach.

I sing. Started late in life - I'm 45 and started 2 years ago! - but it's rapidly becoming my life! My very favorite getaway on a really bad eye day is to sneak out of work early and drive to a state park called Fort Worden (ancient military base on a peninsula not far from us) where there are some really old bunkers built into the hill that have these absolutely incredible acoustics... It's like you can see and feel each sound wave. I go up there and sing and sing and sing. Italian, French, Greek, any and every song I love. Oh man, I have to stop, this is making me want to play hooky right now!

So music is the first thing that comes to mind. I'd pull that guitar back down. Maybe it's time to think of a different angle on music. Find workarounds. Get creative. Like one of my best friends says, "If the thought isn't working, have a different thought." Maybe it's about a different way to have a band, maybe it's not about a band right now but just re-connecting with the sheer love of playing. Maybe it's even something other than guitar.

My choral group meets on Monday nights... that's my HARDEST eye-day of the week because I work the longest hours Monday and have more computer time than any other day, so by 6:30 pm when we meet my eyes are shot and reading music is tough. So I just work on memorizing things quickly and I use little tricks like I highlight with a color highlighter places where the bass (I'm alto and sing next to the strongest of our two bass singers) is on same note or on an octave with me so that I know what to listen for without picking out the notes. My voice teacher knows my eyes are crap and that sometimes I have to just put away all the sheet music and just sing, period.

Hugs to you Andre. It's hard coming to grips with so much loss. Clawing your way back to quality of life is not easy. But it will come, it will!

[cathy8889]

Hi Andre, I'm so sorry life is not good at moment, this really one of the most underestimated conditions, I don't think doctors realty realise how awful it is.
I like to do yoga, play football, when I'm doing these things I can for most part forget about my eyes.

I hope things get better for you
Take care

Cath xx

[Reggiemane]

Andre,
I love playing pickup Basketball games at the park.
When my eyes start to burn it helps me to just go and shoot around for a few hours.
Anything that forces me to concentrate on what I'm doing is a thing that I love to do.

I don't know if you played "The Last of Us" on the PS3, but that is a good game man.
It has a great story and it's challenging too.

You say you don't have a social life and that you do not have the confidence to approach women.
I understand the need to write things like that when you're feeling down but we both know that **** is not true.
You just gotta wait till you have a day when you're feeling good. Get a couple of drinks in your system and
go to the beach or something lol.
If you don't know anybody, just go alone. If you don't wanna go alone drag someone from your family with you.

I know things are gunna get better for you man.

[André Pereira]

You guys are ****ing amazing.

LaDiva,
I found two online courses here that are in the queue. A writing course. And an English course (I'll need to when traveling to Dallas to do my lenses). Just to update, I tested other scleral lenses only with saline and they do not bother me. I am hopeful that will help me.

As the food. I'm in my super restrictive diet still = /
When I stop the diet, cooking is definitely a great option.
At least I'm training a lot my smell. I'm smelling all the yummy foods of my friends, lol

Rebecca
Music really brings a great pleasure. This weekend I played a lot of guitar. The simple act of closing the eyes while I play really helped me.

If the thought is not working, have a different thought - Simple but brilliant. Occasionally I get so frustrated with my eyes that do not give me a chance to think differently. I think this is part of the acceptance of the problem. I start to accept now that this is a chronic situation. To paraphrase Bruce Lee: Be like water.

Cathy
Thank you for your words. They do very well in delicate moment!
Our condition is really underestimated. Not only by doctors, but I think the people in general. You need to explain 10x and they need to see you on a bad day to begin to understand what we feel.
In these 13 days I realized many queries to find a doctor to accompany me and give me new perspectives of treatment.
I found an NGO who answered me seriously (apos.org.br) and has some specialized doctors.

I also found a doctor in my town who studied dry eye for two years. 'm On Restasis again. 4x daily. And again with Doxy. The first time I tried it, my eyes were SUPER sore and it did not work. Let's see now. The It can also provide me Autologous serum eye drops made by a university in my town. It is the next step after the Restasis.

Reggiemane

I'm currently without any console. I am waiting for my change so I can buy a PS4. I've seen friends playing "The Last of Us", seems to be pretty cool. Metal Gear Solid: The Phantom Pain will also be a good choice!

On the part of relecionamentos. Unfortunately this is one thing that strikes me. A while back here I was with an immense ashamed to face people in the eye, even more closely. In the early years I did not feel it so much, after a while yes. I think it affected including the relationship with my last girlfriend.

I have a group of friends who support me a lot.

I started a battle against this shame. But I think it takes a while until I turn the game again. I know it's hard to talk about this kind of thing, but here is the place where I feel safe to expose my ghosts.

Thank you to those who responded. I read the topic several times during those days. Helped me a lot.

[DryInUpstateNY]

I do Judo and Brazilian Jiu Jitsu.

You should look into it. Take a crack at Brazilian Jiu Jitsu seeing as you are in Brazil.

I work hard when I'm there and it's been a part of my life for 14+ years. It literally keeps me sane.

When you are training and sparring and in the zone, you don't feel your eyes. My eye issues are gone. completely. I wear protective goggles when I do the sparring to avoid any errant eye pokes. it works.

after all is said and done, I sit on the mat and I just "meditate". i shower up and drive home. From the moment i start training on the mat to the point i go to bed, my life is serene and very much worth it.

[DryInUpstateNY]

i also take joy in bringing my sons to their wrestling and judo classes. i suit up in the kimono w/ them and we train judo together or i watch from the sidelines when they are in wrestling practice.

throw some drops in the eyes for proactive lubrication and just zone out for a few hours watching them.

i love to play chess as well. i always have and was good at it at one point. i play online when i can now but i don't like to use the computer so much anymore. if i had the time, I'd go back to the local chess club again and play w/ others but my schedule is full.

===============

and hang in there. There are times where my eyes are real bad and i should be wetting them and just babying them. I force myself to go train. After a few days of forcing myself, my eyes feel better.

[DryInUpstateNY]

Just tonight I finished a session of grappling and some judo.
Showered up and drove on some back country roads in the dead of night. Nice cool night, windows down (because my eyes are great after a workout w/ no issues) listening to the best of Bill Withers.

Let me tell you man, tomorrow morning my eyes will be hurting, but tonight on that drive home, it was glorious.

Gotta cherish the little things. We have some bad weeks/months w/ this disease, but a good day pops up here and there.

[André Pereira]

You're right!
I'm learning to enjoy more my good moments.

I had a great weekend. But the eyes sent the bill today. The humidity is 16% here. Tough week ahead.

Just tonight I finished a session of grappling and some judo.
Showered up and drove on some back country roads in the dead of night. Nice cool night, windows down (because my eyes are great after a workout w/ no issues) listening to the best of Bill Withers.

Let me tell you man, tomorrow morning my eyes will be hurting, but tonight on that drive home, it was glorious.

Gotta cherish the little things. We have some bad weeks/months w/ this disease, but a good day pops up here and there.

[LaDiva]

Awesome André! Here is another interesting music project:

http://playingforchange.com/episodes...ange-day-2014/

http://playingforchange.com/episodes/

http://playingforchange.com/about/

[LaDiva]

Cannot seem to edit the above post, so here is a link I really liked: http://playingforchange.com/episodes/higher-ground/

Everyone from everywhere!