The pain and loss of hope

[dryeye4ever]

Anyone of you guys feeling that no one can understand you because you feel tired, dizzy, stoned or wtv that is because of dry eyes. Even companies and experts dont seem to know what we really go through.

And the loss of hope. I got long computer usage dry eyes as long with the big brightness. Do you feel kinda hopeless that this wont go away? I feel like its something we didnt need to have in our lives. Lets discuss what you find unfair in all of this. To get better they recommend me to stop watching tv, use the computer and a cellphone. How is it possible in this era of technology? but God is gracious, Im just a nerd type of guy that uses laptop/pc alot thats why its even more painful for me

[SunshineinCalgary]

Dryeye4ever, do not give up. God is gracious. He understands. I was doing fine at work until they turned on the central air conditioning last Friday (because it's getting into spring..) SO tomorrow I'm not sure if I can survive the entire day at work. But I have a feeling I will. I just look at it one day at a time, sometimes even half a day Many days I feel depressed, but I'm proud to have gone through what I gone through last year, though people do not understand, they can hardly imagine the pain we went through. But that's o.k. Can't expect people to know all about DES.

[robster]

Of course it's unfair dude but asking people to discuss what they find unfair about it is not going to make you feel any better. As with all bad things it's something we didn't need in our lives but listing all the bad things about dry eye will only make you feel worse.

Try and focus more on good things in your life, I know it's not easy but it's better than going over all the things that you can't do due to your dry eyes.

[Mawsky]

It's so easy to let this get you down, It makes it hard when you feel alone in this, but you are not. Thank God for this site! I have had discussions with friends and co-workers, but sometimes that is tough, because it's hard for them to understand, because they have nothing to relate it to, I had a bad year, since this all started, I would have good days and bad, some really bad, I'd end up not being able to work because of the spontaneous corneal abrasions I would get, finally a smart Doc, slapped a contact in and my life has changed since then, my eyes are still dry (no tears) but I have very few "bad days" I still have to add drops, because of my lack of tears, but more than half as often as before I have very few problems with foreign body sensation, corneal abrasions, light sensitivity, and so on. Now the contacts may not be for everyone, and we are all different, some find help with drops, others thru diet, the point is there is hope, and help, don't stop (give up) until you've tried all there is out there. God is Good, and he is our healer!! Hang in there.

[farmgirl]

HI dryeyesforever:

I couldn't help but notice that you are really struggling with your dry eyes. For starters I would like to say, don't give up this too will improve.

You have stated that your eye problem is computer use related 'To get better they recommend me to stop watching tv, use the computer and a cellphone. How is it possible in this era of technology? ' You then went on to say 'Im just a nerd type of guy that uses laptop/pc alot thats why its even more painful for me'

So my question to you is have you done that, given up the computer, TV and cell phone? That is sage advice and totally doable. Limit yourself to say 1/2 hour per day of each and police it with a timer. You will never get better if you ignore the root cause of the problem. If you haven't I suggest you give it a try. Get a hobby, join a club, take up a marshal art, learn a skill, meet some new people. There is a lot more to life than sitting in front of a computer or a TV. And as far as the cell phone goes, feel free to call your new made friends, or even your old ones for that matter. Don't isolate yourself in your house in front of a machine, there is so much more in life to enjoy. You may even find that your life is not in fact over, it may have just begun, make the most of a bad situation.

In the meantime cruise this forum for ideas and implement them. Try new things and you will find what works for you. Your situation is sure to improve as you leave behind the things that exacerbate it. Dry eyes CAN be controlled in most cases. I agree it is not a fun thing to have but it sure as heck beats being blind or having cancer, I have much to be thankful for. If depression is part of your problem seek professional help but you will improve much faster if you make the best of a bad situation.

Remember life is much smoother if you see the cup as being half full not half empty. Hang in there, this too will pass...F/G

[DCRdryeye]

It's more easier to fall into a state of helplessness, your username reflects someone who has already decided on their future "I will have dry eyes forever". That thought alone will be enough for your mind and body to slide into despair. I do know how you feel though. I'm a guy, and have struggled with dry eyes for the past 5 yrs and have tried everything from plugs, restasis to scleral lenses. I also use the computer a lot and often have to close one eye (my driest eye) and continue work. Work on lifting your emotional state, despite of the dry eyes and it will help keep you balanced. Go into youtube and watch "What the bleep do we know" - it will help (if you get its message) ...

[SAAG]

To get better they recommend me to stop watching tv, use the computer and a cellphone. How is it possible in this era of technology? but God is gracious, Im just a nerd type of guy that uses laptop/pc alot thats why its even more painful for me

I totally can relate to it being hard to give up the computer, TV etc. Prior to LASIK, I used to play massive multiplayer online games a LOT, and loved them, plus watch a fair bit of TV, read a lot etc. A few years ago my eyes crapped out on me totally and I had to quit the computer, give up TV (could only listen to it with my eyes closed), give up reading etc.

However, although my eyes still are lousy by normal standards, I can now watch as much TV as I want, plus use the computer a fair bit too without causing my eyes to dive into a downward spiral of discomfort. So things can improve over time. Maybe you just need to give your eyes a good break from the computer/TV etc. for a while, then as things improve, you can gradually add in more TV and computer time.

[dryeye4ever]

HI dryeyesforever:

I couldn't help but notice that you are really struggling with your dry eyes. For starters I would like to say, don't give up this too will improve.

You have stated that your eye problem is computer use related 'To get better they recommend me to stop watching tv, use the computer and a cellphone. How is it possible in this era of technology? ' You then went on to say 'Im just a nerd type of guy that uses laptop/pc alot thats why its even more painful for me'

So my question to you is have you done that, given up the computer, TV and cell phone? That is sage advice and totally doable. Limit yourself to say 1/2 hour per day of each and police it with a timer. You will never get better if you ignore the root cause of the problem. If you haven't I suggest you give it a try. Get a hobby, join a club, take up a marshal art, learn a skill, meet some new people. There is a lot more to life than sitting in front of a computer or a TV. And as far as the cell phone goes, feel free to call your new made friends, or even your old ones for that matter. Don't isolate yourself in your house in front of a machine, there is so much more in life to enjoy. You may even find that your life is not in fact over, it may have just begun, make the most of a bad situation.

In the meantime cruise this forum for ideas and implement them. Try new things and you will find what works for you. Your situation is sure to improve as you leave behind the things that exacerbate it. Dry eyes CAN be controlled in most cases. I agree it is not a fun thing to have but it sure as heck beats being blind or having cancer, I have much to be thankful for. If depression is part of your problem seek professional help but you will improve much faster if you make the best of a bad situation.

Remember life is much smoother if you see the cup as being half full not half empty. Hang in there, this too will pass...F/G

your answer is mind blowing. YOu are right, it feels like God is telling me this instead of you. You deserve to have a life without dry eyes too. Take care and thanks for the kind words.

[farmgirl]

Hi dryeye4now:

Note***I used the new name suggested by someone on earlier post.

I felt compelled to reply to your post so maybe that was coming from God not me. That is one of the ways that he speaks to us, if we choose to listen (as you obviously did). I have Sjogren's syndrome and if you google 'Sjogren's' and 'cure' you will see over and over again there is NO cure for Sjogren's. Well, I choose not to believe that and someday hope to be able to post to Rebecca's 'Dry Eye Success Stories' page. Hope to see you there,.....cheers.....F/G

[fiddle]

I so understand what you're saying Dryeye4ever. I haven't posted much here as after almost 2 years post lasik I feel what's the point. I am where I am and things have only stayed the same with no improvement for me. Most of my family has no idea of what I live with on a daily basis and my quality of life has been altered in ways I had no idea (can't read for pleasure, never sleep through a night, can't swim for fun, can't drive with the windows open and eye drops cost a lot of $, ect).
Not sure where things go from other then onward for me, but I hear you for sure.
fiddle

[farmgirl]

Hi Fiddle:

What do you mean you can't drive with the windows open? I got a pair of very dark WileyX sunglasses that fit my face well, plugged off all of the vent holes, suck them down to my face, screw my baseball cap on put the top down on the convertible and CRUISE!! I am almost bullet proof with them.

What do you mean you can't swim for fun? My favorite activity is boogie boarding. Again I suck the Wiley's on with the strap that came with them put a baseball cap on to block the sun and have a blast. Occasionally I lose the cap but it always floats back up and I have fun. If I swim at a pool I suck the swimming goggles on and go for it. Aquacise is great because of the high humidity above the water, for that I need nothing on my face and don't need to stop to put in eye drops. The autologous eye serum got rid of the dry spots on my corneas so that was a relief. There is hardly anything I can't do anymore as long as I don't overdo it.

I ditched all of the medications that were irritating me and making me worse namely gels and non preserved eye drops and the only thing I need to aquire now are Onyx goggles for nighttime so I hopefully don't have to keep waking up to put in drops. I found gels to be very irritating and would wake up looking like something out of a low budget horror flick. Restasis helped, all 4 punctual plugs helped, autologous eye serum helped, I just keep getting better and better even though I have a non reversible condition.

Hang in there, there is hope that you will a) recover or b) find enough things that work for you to get to a comfortable spot where you can actually enjoy life again.

Cheers....F/G

[SAAG]

Well said Farmgirl!

[jax8it]

I completely get what you guys are saying. I am 5 months post lasik and still trying to figure things out. I go for walks, swimming, to the zoo and even get on our boat with my 7eyes strapped tightly to my head. Doing these things make me feel almost normal again. What I am having issues with are the indoor activities like going shopping, out to eat, going to the movies, hell even going to the grocery store. How do you guys do it? I can't stand the AC on my eyes and I only have onion goggles. I can't get over going out in public with them on. Any advice would be appreciated. I can't find anyone in the Dallas area that can make the custom moisture chambers.
Bianca

[fiddle]

I have come to realize that what works for one does not necessarily work for another and while I have tried many methods and the like, as I said I am where I am. This post was under emotion and depression, not a success story and for me, realizing that others feel the same as I do (e.g., dryeyes4ever) is what helps, goggles aside.
fiddle

[No tears in ATL]

Dry Eye 4Ever,

I have pretty severe dry eye and have reflected on how much it has changed my life, and whether or not this is a message being sent to me. I know, it sounds kind of hokey, but hear me out. I work with spreadsheets all day. It's awful on my eyes and DES has slowed me down considerably careerwise. Truth of the matter is, I really don't like what I do that much. I'm pretty good at it, but sure as heck don't LOVE it. And I know, if this thing gets much worse, I simply won't be able to stay in that line of work, lest I go blind! So I look at it as a message for me to go out and do what I was meant to do, which is anything BUT sitting in a dreary highly air conditioned office in front of the computer. I like the outdoors, and independence, and more altruistic pursuits, so I'm working on trying to make that happen eventually. So, all I can say, is when life gives you lemons, make lemonade--we really have no choice as human beings. This could be, as my sweet grandma says, "God is tapping you the shoulder, and giving you signs." Maybe you're an outdoors person or a great painter or something and you don't even know it! Hugs to you.

[jax8it]

Fiddle,
I am not even at the acceptance stage. I don't know if I should keep hoping this will get better or just accept it. This has completely changed my life. I am depressed every day. Some days I don't think I can make it, but it's not just me in my life. I have a 6 year old son. I take meds for depression and I know they are not helping with the eyes because I have dry mouth too. Nobody in my family really understands how this has impacted. My husband will say you had a good day today why are you crying? Well, because my eyes sting and burn without some protective moisture chamber and they never did before. I get the emotional aspect Fiddle and it is not good. I wish I could just come to terms with what is.

[farmgirl]

Hi jax:

Yeah I hear you I have the same problem. To answer your question here is how I cope.

If it is the mall and I sense a problem, I just keep the dark Wileys on as long as possible. Restaurants etc. the same. Nobody much questions dark glasses. I have a problem with what I call my racoon glasses which are the Wileys with varigrey lenses. Those go clear and my vanity interferes with my comfort. I do wear them at my friends house to play games as they always have an overhead fan going which I simply cannot tolerate. I admit I feel foolish but they are very kind and don't seem to notice. Movies again wear the varigrays it's dark and no one can see you. Sometimes I even wear those watching TV at home if there is too much air movement and definitely driving at night (for me driving is the worst). If my vanity overrules my common sense (which it often does in public places) I just keep pouring in the drops every 20 min but will pay later with burning eyes at night.

I suppose the custom moisture chambers would be the answer if you can manage to find someone to make them. I haven't tried them yet, mostly because they don't look to me like they would seal well enough but I suppose they would most certainly be better than nothing. Someday maybe I'll try to locate a pair. Partly for me the problem is I get tired of swapping glasses and carrying a pair for every occasion and if your're a guy it could be even worse without a purse.

What it comes down to is I do what I need to do to cope, but it is infinitely easier once you have identified your triggers which it seems you have. What you need to do then is you need to take steps to overcome those triggers. For me it is either wear some kind of eye protection or pour in the drops and pay later that night. If I HAVE to wear my raccoon glasses I will, like the time I went on a cruise and left my sunglasses in a taxi. I was without them for 6 months and HAD to rely on my raccoons....didn't like it but I did it. I found wearing a hat kind of took the cuss off of them. At least I felt like I could hide under the hat.

For me the bottom line is to live my life as normally as possible with the least amount of discomfort. Mercifully I am not as sensitive to air conditioners in public places as some but maybe it is because I have found a regime that works pretty well for me.

Good luck Jax and I am hopeful that your condition will eventually improve, it seems that many Lasik victims do....cheers....F/G

[farmgirl]

Gosh, this is a busy post. While I was fiddle fussing around writing my reply (shouldn't have gone and vacuumed) many more jumped in. Obviously this is something that needs to be discussed.

To No tears in ATL I like your attitude. What you had to say is NOT hokey. Like I said before 'You may even find that your life is not in fact over, it may have just begun, or as you stated 'if life gives you lemons, make lemonade'.

To fiddle and jax your feelings are understandable in the early stages but please don't get stuck there. If depression is the underlying problem holding you back start at the bottom and address it. Please don't allow this to control you and take over your life. Go online and study natural means of controlling depression, diet, hypnosis, self help books or get some professional counselling. Chances are as your depression lifts your eyes will improve along with it. Jax it is OK to accept your condition for what it is at this time. Accepting does not mean 'giving up' any hope that you are going to improve. Take it one day at a time and you will find that you do eventually improve, Even for me with a non reversible condition I constantly improve and I try really hard for this not to be a limiting factor in my life.

It helps that I don't have to work in front of a computer all day but like No tears in ATL says he/she is going to look at a career change. How life altering is that!! but not necessarily a bad thing. Like grandma said, "God is tapping you the shoulder, and giving you signs. Maybe you're an outdoors person or a great painter or something and you don't even know it! WOW your Grandma was a sage person.

Hang in there everybody you too will find your way but remember, attitude is everything...cheers....F/G

[farmgirl]

Look again Fiddle this post was under depression, and emotional health NOT emotion and depression there is a difference and I think that anything which can help one rise about wallowing in self pity is worthwhile. Remember, you too will eventually find what works best for you...Cheers...F/G

[Rebecca Petris]

Wowsie, what a thread.

We are all really different, aren't we. Different in how we think and feel and process, and of course different in what stage we're at right now with our eyes (and heads).

Some of you right now will benefit most from the terrific examples of others on the board with outstandingly positive attitudes and relentless practical troubleshooting, and just knowing that others can and do live well and happily, somehow or other, despite their personal variation on the chronic dry eye theme.

Some of you will benefit most from pure empathy unadorned with advice. I know that place. Intimately.

Some can benefit from advice on dealing with the physiological side of depression. Some can't, at least right now, because the emotional side is just different for them.

What jax8it said is still kind of reverberating through my mind "...realizing that others feel the same as I do (e.g., dryeyes4ever) is what helps, goggles aside." .

Makes me think of a lengthy period of my life when I was struggling to keep my head above water, coming to grips with family health issues. During that period no matter how sound the advice was, sorry, I just couldn't have done the stuff. If I'd ever talked about that fact to an outsider they would have thought I was nuts because I appeared to be pouring about five people worth of energy into other directions, professionally or even websites like this but yet the fact was I could not scrape together one measly ounce of energy for my personal wellbeing in any of the direct ways that anyone would have been likely to recommend if they had known where I was at. It took years, literally, to work up what felt like a superhuman effort to accomplish one or two things which might just sound to all of you like such easy no-brainers. For me, it just was what it was. I was where I was. Beating myself over the head about it only compounded matters.

In retrospect I sure wish there had been someone near me with the wisdom to say, "You know, given what you've been through, I totally get why you feel like this and I want you to know it's OK to feel that way right now. I am sorry you are in that place. It's so hard. I've seen how people come through it so I'm confident you won't stay there forever but for now, let yourself grieve. You really do not need to feel obliged to somehow magically 'pull yourself up by your bootstraps'. " It's that retrospective that makes me want everyone who is hurting to get that message when they need it.

Anyway, for all of you, whatever your need, I hope you're able to glean from these pages whatever bits help meet your present need and let the rest drift on by, knowing that everyone who contributes really cares and is giving the best of themselves to help.

[farmgirl]

You're just genius Rebecca, so well put.

18 years ago I had to give up a very lucrative career due to a chronic neck injury. I threw my own pity party for a long time as I was systematically forced to give up almost all of my hobbies and any sport that I had ever enjoyed plus undergo a 7 year battle with an insurance company. Just because you 'look normal' doesn't mean that your 'feel normal' which makes it so difficult for others to understand. It took me 15 years to surrender my professional designation (that was the last thing that I clung to) but you know what, I discovered that as I gave up the things I had enjoyed I found more things to replace them with, life went on. I think this life experience has helped me much more quickly deal with my latest setback because I discovered when one door closes another opens. I am no longer in chronic pain with my neck injury and am even able to enjoy some of my past hobbies again as long as I don't overdo; simple things like reading for example. I am sure if I had another horse I could even ride again. I am also no longer in chronic pain with my eyes either after 2 1/2 short years (a lot of thanks to this website) and for that I am grateful. Once again I have accepted or accomodated my limitations but I will never give up the hope that I won't continue to improve, I have much to be thankful for.

Thanks for your words of wisdom and your gift of understanding. You're the BEST....F/G

[Hopeful2]

Wow . . . what a great post Rebecca!

I never cease to be amazed how clearly you can articulate your healing, inspiring messages. This retrospective message is bang on! . . . In fact I think I will print it and add it too my journal.

I really do think it is OK for us to live in that space of grief and despair when confronted with traumatic circumstances. It is being in that space that we may come to realize many truths . . . we are all important . . . anything and everything can be forgiven . . . this moment is all that there is, and 'it is what it is'. . .

A close friend of mine was involved in a car accident several months ago. We meet regularly and share our frustrations with how hard it can sometimes be to get comfortable with our 'new' bodies, and how others really are unable to appreciate the huge impact that the trauma has made on how we see ourselves and our life. I marvel at how many similar insights we have found in our healing journey, despite the fact that our physical injuries are very different. Actually, my friend did notice recently that she was experiencing episodes of burning eyes, which she had never had before. It does seem to support what many of us here have remarked on; stress may aggravate symptoms of dry eye. . . or maybe even cause dry eye?

Thank you Rebecca for setting a framework for all the caring thoughts that others are wanting to share.

I am so grateful for all that you do to support this community.

Hopeful2

[fiddle]

Wow is right, I think a lot of what I was trying to say has been misread. I feel at this point, and I say again, I am only speaking for myself here, that I am at a point of acceptance with what I deal with on a daily basis. Even not being to read what post I'm on as clearly pointed out by farmgirl for me (my sight limits me here too it would seem). I accept my sight at this point and no longer look for more cures, am I happy with where I'm at no, but does my life go, certainly.
I say again, that works for one may not necessarily work for others, goggles aside.
What I take from this site has usually been (for most who respond with support that is, and at times that can just be listening), is the comfort in knowing that others have felt what I feel, positive or not. At the end of the day, I'm only human and try to put my best foot forward in whatever direction that takes me these days.
fiddle

[farmgirl]

Hey Fiddle: I feel like I owe you an apology. I realized that after I sent off that post it could be misconstrued as a missive sent directly to you. Honestly it wasn't. When I said 'I think that anything which can help one rise about wallowing in self pity is worthwhile' I was referring to anybody in any life altering situation, including myself. It was not my intent to send barbs directly your way although clearly now that I reread it, it seems like it was. I was trying to point out that emotional health is an important component of recovery and needs to be addressed along with all the other physical issues. Enough said, please accept my humblest apologies and I wish you the best in your recovery....cheers...F/G

[Rebecca Petris]

One of the obvious-but-easy-to-forget pitfalls of a bulletin board for people with eye problems is that none of us is really comfortable reading online for long. I know I am often guilty of replying inappropriately to a post because I've only read about a quarter of it!... or posting a reply that's totally redundant with five others. Fiddle if I said something that sounded like it was aimed at you, I'm sorry

[fiddle]

Thank you Rebecca and farmgirl, sometimes just being heard helps.
fiddle

[robster]

Wow this is a monster of a post. I know it's extremely hard to look for the positives when your eyes are hurting like hell but if you can adjust your life to make your eyes less painful - do it. If that means less PC time, wearing silly goggles or whatever else then try it.

My eyes have improved considerably the last few months but they are still the first thing I think about when I wake up and the last thing I think about before I go to sleep. They are still the main thing I think about but I really don't allow myself to think about them too deeply. I know it's very difficult but as soon as negative thoughts about my eyes enter my head I quickly acknowledge the thought and then try to think of something else I enjoy straight after.

Easy for me to say but I know things can improve. It's just a shame that more people who's eyes have improved then disappear so unfortunately we hear more negative stories than positive ones on the boards. I really believe there are just as many people who have overcome their eye issues who have at one stage or another posted on boards it's just that we never hear about it.