relationship&dry eye..

[green eyes2]

The cornea is the most sensitive organ in the entire body and is filled with thousands of tiny nerve endings, which is why dry eye can be so excruciating. I think eye pain is worse than diabetes or many other types of common problems. I'm sure there are some rare disorders that are worse.

The unique thing about dry eye is that those of us with severe eye pain don't seem to get much support or understanding from anyone, including eye doctors. Dry eye is so misunderstood that half the time eye doctors can't even tell you what kind of dry eye you have and/or can't help you. When I had very mild dry eye, I went for several years not even knowing why the heck I couldn't wear contacts or what was even wrong with my eyes. Every time I went to an eye doctor they would say my eyes looked fine. Since my eyes never get red, no one can even understand why I'm in so much pain. Every time I said I was in pain, no one could help me.

I don't think anyone who hasn't suffered from severe dry eye pain can understand just how much it impacts my life. My eye pain has caused me to have headaches, a sick feeling, stress, etc. There is absolutely no way I can work, even though I'm otherwise completely healthy. I have missed out on all kinds of social functions, can't read or watch tv for pleasure, don't go to movies anymore. It's a miserable existence and a far cry from what my life was like before dry eyes. Honestly, if I have to live 40+ more years like this then I'd rather not live. The saving grace about being older and developing this kind of eye pain is at least you won't have to live 40 to 50 more years with it like many of us young folks may have to if an effective treatment doesn't come along or if sclerals can't help.

[Amy09]

I'm sorry to have to bring this up, and I am in no way arguing with anyone or pointing blame at anyone, but it just really upsets me to read y'alls posts about how it's the end of the world because of dry eye and how we can't possibly understand the pain y'all are in. we’re all here for the same reason. Don't get me wrong, there is a very good chance y'alls dry eye pain could be far worse than mine, and I do empathize. Also, I used to feel just as depressed about dry eye when I was first really struggling with it. But I can also say from experience that trying to continue with normal life as best as possible, despite pain and embarrassing redness, is far better than moping around and wishing you could die because there's no cure... yet.

Trust me, I agree that it sucks to have to deal with this for possibly a very long amount of time- I'm freakin 19 years old and have been dealing w/ this since I was 14- I could have a good 60 years of coping w/ this before my time on this earth is up. I've already had a couple minor surgeries for dry eye and take Restasis, serum drops, and other over the counter stuff, and I haven't even hit things like pregnancy, menopause, or general aging, which will probably make my dry eye worse. But if I sit around and wait for some kind of treatment for dry eye before I go on w/ life there is a very good possibility that I will miss out on a huge part of enjoying life.

It just really frustrates me to see people that are 10, 20, or more years older than me giving up on enjoying life because of dry eye. I hate to break it to y'all, but theres a good chance you're going to be having problems w/ things like arthritis, chronic back pain, etc. before your time is up, so you might as well make the best out of life while you can. Again, if I'm coming across as mad or argumentative, I had no intention of doing that, but I just really think people should take a step back and consider all the other things in life that they are currently blessed with, and take advantage of those things. I made the mistake of not doing that a while back, and I can honestly say that I'm enjoying life much better now, trying to continue life as normal as possible. It just really upsets me to see so many people give up because of this.

[Jade9923]

Amy Amy Amy...lol

When I talk about the pain of dry eyes I'm talking about the pain of having a needle poking your eye all day long. When I had the really bad dry eyes it was nothing that could be ignored. How do you ignor someone burning your hand with a lighter? This is the pain that I spoke of....something that is IMPOSSIBLE TO ignore. It wasn't something you could take your mind off of for very long. Red sore eyes was the least of my problems! Think about your eyelid rolling over a dry piece of sand paper all day long....no tears or moisture. IT WAS PAIN THAT I FELT. It's sorta like someone driving a screwdriver thru your arm all day long and you being able to smile and go on about your day with a "good attitude". Give me a break.

You're very young and I'm glad that you have a good attitude about your dry eyes. I'll say this...you sure have a lotta .........(pick the word, any word) to lecture a group of people so much older than you who have been thru God knows what. You've got spunk girl. You're a spitfire and that will be a big advantage for you as you advocate to get the treatment you need for your eyes.

Oh, I'm also smack dap in the middle of alla the problems you spoke about...arthritis...knee replacements....They are NOTHING (a walk in the park )compared to the pain of severe dry eyes. Give me arthritis in every joint of my body over the kind of dry eyes I'm talking about any day of the week.

I wish you all the best and really hope you do not have to suffer the kind of debiliating pain that is impossible to ignore. Any kind of chronic problem at your age is really so sad. Keep your chin up girl, I really think you will do well.

[Flick]

As another young person with dry eye, I try not to think that I'll suffer for 40-50 more years. Rather, I think about how many better treatments there will be by then (and possibly cures, if we're lucky). If so much progress has been made in the past 10 years, in 20-30 years we'll have so much more. Especially as the boomers age and the population of dry eye sufferers increases and the research dollars follow.

At least that's what I tell myself.

[neil0502]

I'm with Flick, but then....I'm really with all of you to some degree or another.

Since this was a thread about relationships and I've had both more time to think through the subject AND ... much more has happened to me since MY last thread on the subject ... I'm going to throw out the following, disjointed thoughts:

Everybody's approach to how to present the subject--when they're single--to potential dates is going to be different, I assume. Some people view their dating potential as vast and have confidence that Mr./Mrs. Right is out there and that they'll have a multitude of choices along the way. Others view their choices as limited ... for a whole host of reasons.

BEFORE my ocular surface (BAK-induced) damage, I was ALREADY disabled because of accommodative and binocular function (eye) eye disorders that resulted in chronic pain. I would tell ANY potential date ... pretty much right away ... that I was "disabled and unemployed." I think it saved me a lot of time. If somebody could handle it ... then they could handle it. Somebody that freaked out at the news ... probably wouldn't have worked out in the long run, anyway.

Now that I've got the BAK damage, too, there's just no hiding it, so ... again ... =I= would be really up-front.

But that's me.

One thing I might suggest, though, is that you REALLY need to figure out what kind of a partner you would have when you start to get to know somebody. Empathy. I use the word quite frequently. Empathy is something you may want to consider as a MUST in a partner. They have to have SOME ability to "feel" what another person is feeling. Tough and rare, to be sure, but NOT impossible.

As I said, I started a thread along these lines a few months ago. Since then, my wife and I are in a bit of a "separation," aided, perhaps, by about 7,000 miles. Despite her being a Nurse Practitioner, I learned in a decade that she really had NO idea what another person was experiencing and put NO effort into figuring it out. I mentined that--for two days after her PRK--her eyes were KILLING her, but ... a week after that ... she couldn't imagine what eye pain would be like or what somebody who'w eyes were hurting might need.

I've known a number of people battling chronic illness. Many of them have lost MOST of the people close to them in an ugly sort of weeding out process. Sadly, I suspect that our particular brand of issue WILL create certain needs for many of us ... needs that we may HAVE to rely on others to meet.

The therapist that my wife and I saw suggested that my wife and I had "each married our own personal version of hell: she married somebody with needs and I married somebody who never wanted to be with somebody WITH needs."

Maybe it was denial on my part--never wanting to see myself as HAVING needs. I hope that those of you really struggling with this are more honest with yourselves than I was: if you have needs from a partner, it's likely to be important to you that they be met. Absent that, I think you have some basis for dissatisfaction and resentment over time.

GreenEyes: you wrote some pretty powerful stuff. Having been diagnosed--via an (basically) electron microscope examination of my eyes--with an abnormally high number of abnormally large nerve endings in my cornea, I can attest to the sort of "broken glass in my eye" feeling that many people experience.

Little example....to which many of you can relate. I'm in Portugal right now....in a very old city with steep hills and cobblestone streets. Against my usual habit, I decided to venture out in the evening for dinner. The minute I hit the air, my dry eyes got all blurry. I couldn't KEEP from stumbling on the cobblestones, staggering like a drunk person, stopping continually to try drops, palming, or anything to regain focus and make it down the hill.

As the son of a past VP of the American Diabetes Association, I can say with some confidence that we should beware comparisons to other illnesses and conditions. Those who can control diabetes with diet or insulin are on one path. Those for whom it is out of control have a horrible row to hoe.

Illness sucks ... in any way, shape or form. Ditto pain.

When I get back to the States, I'll resume the quest for the "cure." Meanwhile, y'all have--more or less--another contributor to Ye Olde Pity Party

[Mika]

neil0502

im very sorry2wat happened2u neil...
guess dat wit ur dryeye u finally saw the true person which lies in ur partner soul&her true feeling..n dat wasn't true love...

yeah people don't kno wat we suffer..its only wen they feel it themselve dat they'll know..n they can even, will not be able to withstand this... so we r strong to be able 2live with this while other people would have collapse.. (altho sometime we all collapse)..

but with dryeye our love relationship opportunity is near nil...
me too i fink i must tell my potential date about this problem before she saw the symptome and runs away without knowin wat happen, for fear of contamination..

sometime i stop *dreaming*...just hope 2 live with only 3character beside me: my family, my friends and ....god !

but i fight so hard..so hard 2 be so different and special in others eyes.. bcoz wat distinguish me from others is this disease...but also of my special characteristic..
if she wanna a *near* perfect man with rare bad preference(cigarett, alcohol ...) , she gonna accept this problem.. :
bcoz wat i can say with this dryeye, it has make me more perfect in my other attributes.. i have learned from this ill...
yeah....ONLY an empathy person will understand... cuz every1 in this world care about themselves and their goal...
empathy exist only in RARE people..
empathy exist only in people people who truly believe in god bcoz its only them who know how to care....
bcoz only them will go wherever u will go.... through all the things..

[kakinda]

Hello,

I can relate to pain one cannot ignore however i must agree with Neil: beware of disease comparisons. I know what is to have a "bright functional brain" entrapped in a painful skull and people around wondering why you're not totally functional when you do look quite alright.
I have had trigeminal neuralgia, a huge corneal endothelial ulcer and a few other things in my life...
But yes, Pain (especially around the eyes) is certainly the most difficult thing to manage, I've had it for 15 years everyday in different forms over different periods.
But again other diseases cause terrible pains... and once you reach a certain level, it may not be worth thinking if it's the worse of all or more likely is it among the worse (Consider other non physically painful such as lock-in syndrome, consider other pains, consider multiple handicaps...)
That's what I call a "dead-end issue", so let's look for better treatments including pain instead, be proactive whenever we can.
I have tried to convert pain (and some form of rage) in energy to fight this... to press doctors so much one may actually get "a drop" of pure empathy out of them, to try to find the right people to be around with (empathic hopefully or even sympathetic persons... let's not forget that we are quite a lot in this and other forums, so maybe some of u could actually find friends or a date here... just a tought).

still, do address the issue of pain with your doctor...

Take care,
K

[kakinda]

I sort of feel responsible for what happened in Coimbra, Neil.
I hope the other places in mentioned were more DE-helpful than that city.
Take care
K

[robinzb]

i had a relationship a couple of months ago just wanted to know what it felt like to have a date with des.

its really like someone said before, when u on a date n ur eyes start to get worse, its really a big trouble cos u dont wanna show any weakness in front of a pretty girl, so u need to work really hard to ignore your pain. i felt really tired to do this time and time again. i guessed this just wouldn't last long, so this relationship was over in a short time.

some people might say so called 'love' could inspire u n give u more courage to overcome this pain. for me, with this relationship, i felt more miserable as u would have a higher expectation to be a normal person, to enjoy relationships as normal people would do. the reality is u just cant. this kinda torture was with all the time at that moment.

i guess i shall just concentrate on myself right now rather than having troublesome relationship esp im still a student with no income,spending a lot of money from my parents for the treatment of des