This Life Is Harsh...!

I have been suffering from a degenerative eye disorder called keratoconus in both my eyes since 8 years which is incurable in my case. Because of it i have lost 40% vision in my eyes and am almost half blind during night. It was a major setback and struggled to live with it but in the end had to accept it. Just when after 8 years when I though I can also lead a normal life, God had something else waiting for me, another incurable disease called T waiting to wreck havoc in my life yet again. This life has been a wasteful errand. I cannot see any ray of light at the end of this infinite tunnel. Living a life with these two incurable diseases which won't kill you but neither will make you better that a dead person is the nightmare anyone could ever imagine. I dont know for how long will I toil!
I hope everyone here get rid of this T!

Best wishes
Harry!

 

Hi Harry,
They are making great strides with regenerative eye medicine - hopefully ears will be fixed up soon as well!

 

@Harry

I too suffered medical conditions before tinnitus struck me. Knowing that I eventually will be dead is more often than not the main reason to why I'm able to cope. No point in taking what eventually will be granted to you anyway, though. Better to fine-tune ones ability to put up with horrible things, because it might come in handy during whatever future existence that is next.

If nothing else, we're all here to go crazy together with you. If you ever felt lonely, that should be a thing of the past.

 

I had extreme eyefloaters and they did a vitrectomy on both my eyes. I was so happy I could see clear again and I thought nothing could beat me ....this eyefloater stuff took 2.5 years of my life when I was 32. But I made full recovery...nothing could be worse than this ...if I got deaf...I wouldn't care because I could see clear again. (BUUUUUUUUUUT at the time I never ever had any knowledge of tinnitus) ...so when that struck me I went apeshit and was acting like a crazy monkey escaping from a cage.

Than I thought ...if I beat this I will be so happy again.... but there was nothing to beat....I needed to habituat....and after 1.5 years I did.... and on the day I would say I could finaly coupe with it I got S-OCD ...and now have to deal with this.

I for sure know that after this something else will be there waiting for me. Life is full of challenges. Perhaps it's a sign that I have to change the way how I live or something so I'm focussing on that now. Stress and anxiety are the main reasons everything looks worse. So I have to get that down....but I do not want to take meds.

So how hard you have it...like everybody else also says ....your not alone in this and if you need some people to talk to...this is the place to be. It gives me the feeling I'm not going crazy because there are people who can relate to what we all have....

Stay strong!!

 

@Harry
Hey, 100% agree with you there. I've had eye floaters since 13 & was told by the GPs back then that I was making it all up for attention -_- Few years down the line I became a really anxious person regarding my health. I learnt to cope with the floaters as best I could, my family saying sorry once they found out it was an actual condition!

Then at 23 I started to look at my life really positively, began making plans to get out there in the world (I've always wanted to travel & be free spirited ) ... then came 19/09/2013... It's felt like a decade since that day, it hit me hard. really hard. I felt like I'd never be happy from this point on, eye floaters & now this!? I've always been a really healthy person, active & really enjoyed the smallest things, but my sight & hearing are now a mess! Since having tinnitus my hearing seems to be getting worse, my eye floaters are more invasive than ever.

I'm only 25 now & feel like an old man I try to keep a smile on my face as best I can as I know there are many out there suffering a great deal more.. but it really doesn't help. I feel so deflated & beaten by something so seemingly small to others. I really hope this isn't as good as it gets

 

Same here @Harry ! I'm still young but these conditions of life and T make it unlikely that old age, when all manner is ailments are going to hit, is going mean an enjoyable retirement. You're right, life is harsh and it's full of suffering and what can be rightly called weltschmerz. All the best to you. There's a long way to go.

 

You can do something regarding the eyefloaters. My surgery was 10 years ago and went without a problem...so I guess in 10 years they must have improved it a lot. I live in the Netherlands and the surgery was done in Belgium in a city called Leuven by Dr Stalmans. One of the best doctors regarding eyefloaters. I had it realy severe and now I have not one anymore!

 

No , no cataract at all....but like I said I took a lot of rest. A lot of people went to work 2 weeks after the surgery, but I did not do that. I kept a diary on a forum where I posted a lot 10 years ago. If you search in google at "I had FOV Jan 27 in LEUVEN by Dr Stalmans in FOV" you should find it on floatertalk.yuku or something. .... if it still excists.

Catarct was also my main concern, but nothing happend and I have clear 20/20 vision in both my eyes. Like I said ...when I had this done I was so happy....but than T came along and S-OCD. T i'm done with now this S-OCD thing and I hope I can go back to being myself again....who ever that is these day

PS Dr Stalmans was my resque... If I emailed him at 3:00 am at night at 3:15 I had a reply....this doctor is awesome!!

 

Wow, see a vitrectomy scares the hell out of me! I've looked into it but I dunno... not to mention the results aren't awalys 100% either. Glad yours was a success though, you lucky bugger

 

It scared me too, but at least you can realy do something about that than only accept it. And even if you accapt it and later on do not anymore you can always do a vitrectomy. With Tinnitus you just cannot. Both my eyes have been done on seperate occassions of course, but they both went well and with no cataract.

In the Netherlands they did not want to do it, but in Belgium it was something that was done all day and I looked for the best doctor regarding eyefloaters and that was Dr Stalmans. He made a lot of people happy I'm sure of that! ;-)

I said to my self or I stop complaining about floaters and move on or I keep complaining but do something about it. So I choose the second

 

I'll keep that in mind You're right, I'm a little happier when I think I've got a chance to get rid of them, & like you said, this T though doesn't have any options or way out! There does seem to be a lot more efforts to do something about this though, from what I've seen at the end of last year that is, something to be hopeful for at least

 

I was not a little happier when I knew something could be done about it...... I went totaly donkey kong because I knew there was a light on the end of the tunnel that could fix this stupid floaters and I could see normal again and not have the feeling I saw the world through a spiderweb and strings and dots. It was like the whole universe was inside my eyes casting shadows on my retina.

What I try to say...is that hope is a good healer....if you know for 100% sure you win the lottery next month ....you quit your job right now and sit the rest of the month out totaly broke but with a smile on your face.
If you know for 100% sure you eyefloaters can be removed but you have to wait 6 months for surgery...you wait 6 month with a smile on your face because you know you can sit these 6 months out knowing there is a cure.

If you have floaters and you did not know there is a cure and you look to the upcoming 6 months ...you don't think the world is that much fun anymore because there is no hope....you do not even have to do the surgery to feel better...you KNOW there is a cure and YOU can decide when to use it. So there is your hope.

This counts for every thing.... if there is a light on the end of the tunnel you can take it while it lasts. When there is no light in the tunnel you keep sitting in the dark not knowing which direction to go. But if somebody lights a candle you have a direction to go and gives you a positive feeling. So that is what hope does to you

With hope you can be near dead but still be happy cause there is a change you make it.
Without hope you can be near dead and give up on it already. But at the same time....your still the same person on that moment, that second, that minute, that month, that day and nothing is changed the next minute or hour or perhaps month, but the point you got your hope...changed your life right there and than.

I keep saying this to my self so I live more in the know than try to think to much about the future.

 

Thank you everyone for your comments and support. Its comforting to know that there are people out there who understand my agony and suffering. I hope the grass is greener on the other side and of course silent as well!

 

I hope your grass gets greener on this side and also more silent
It's all tuff as nails....but......well there is no but.... it's all tuff as nails.....but together we can get eachother through

 

I have keratoconus as well
Got it fixed 6 years ago in Los Angeles - dr Boxler-Wacher
Got intacs implants to flatten the cornea and corneal cross linking to stop further changes major improvements !and no more KC since then.
Now if they can fix T like they fix Kc I would be very happy

 

I had two optometrists measure my vision with them commenting that the measurement changes while they measure. I still see blurry with glasses and I can't seem to find glasses that fit me. I had myopia in my teens. In the last 5 years my astigmatism has been increasing. Is there any test I can make to see if it is keratoconus and at what stage?