I would appreciate suggestions on how to cope with life with DES

[Lucy]

Elaine, your going to exercise is a GOOD thing. During my worst times, I've tried to do what I could. I have a treadmill and in my earlier days post-op often walked the treadmill wearing swim goggles. That was before I had Panoptx. ..........I also went on a diet in my early days and decided that was something I COULD do, with or without good eyes. Unfortunately, I'm right back doing the same thing again.

In the darkest of times, I think some exercise (even if you have to drag yourself out of bed) will help you feel better. One thing for me that I was able to do, even though I didn't feel like it was go see a movie. I did not necessarily see very well, but I could do my drops as often as needed and wear weird goggles/glasses. For a couple of hours, I didn't forget about my eyes, but had a chance to think of what I was doing. I WAS out of the house, trying to do something normal. I also go swimming every chance I can either in a lake or a pool. It is something I've always loved to do. I take my swimsuit always when we travel.

Keep up the good work and grit. Lucy

[YGB]

Thanks Shelley. I had a better weekend mentally although physically progress is kind of flat. Hopefully things will keep getting better.

Thanks for providing some eye friendly suggestions. I have started walking the dog a whole lot more since the outdoor cool air seems to help. I guess I need to pick up some other eye friendly activities. Thanks again!

[heather g]

I have found that my children don't let me get away with much! They are little 4 and 7. I am very active in their schools and extra activities. School air is very dry and makes for a tough day and night when I am done.
I just decided I wasn't going to make this their problem. They love for me to be there and I know I won't get these years back. Sure I notice people staring at me sometimes because I constanly blink or am applying tears. Or my eyes are red. And It bothers me. The discomfort in my eyes bothers me. But I am there to make it for them. They won't remember (probably) that I used eyedrops all through the play,etc. Or wore sunglasses when it was cloudy outside. They will remember I was there.
I have even purchased a pair of glasses that has clear lenses and wear them to shop or go to these school functions. It isn't 100% but it does help keep the air away. Better than nothing.
I try hard to focus on the fact that I have my vision. It is very good. And looking back to 1 month, then 5 months and now, I have improved. Not amazingly but a little here and there. I tell myself there are still some options open to try. I quit letting myself dwell on the Dr.'s timeframe as well since according to him it was 2 months and when that passed it was 6 and so on.
All I can say is figure out what it means to you to do "normal" things with family and friends then prepare for it and do it. It gets easier to do with time.
And one day soon we can all say remember when we had dry eye and how awful that was!
Seriously hope some things in these posts help you. I know this site has helped me stay hopeful and positive.
Will say a prayer for you as I do for myself !
Heather

[YGB]

Heather - I am certain that all of us would have a whole knew appreciation for the little things in life experienced with our eyes post-dry eye. I took my healthy eyes for granted until I developed this dry eye problem.

It may take perseverance, time, prayer, and successful new treatment options, but I am certain that at least a part of all of us is here because we believe that it will happen. Thank you all for making that part of me that believes and hopes for a better day bigger than it was before.

[neil0502]

YGB-

Can I just start right off by saying, "Do as I say, not as I do?"

I think I have some great advice here, but am doing a pretty mediocre job of adopting it myself, for--like you--I'm a fighter at heart.

I think there's a lot to be gained in things like meditation and yoga. Mine has been a pretty crappy eye morning (humidity dropped last night and is staying low), and--rather than go for a hike or a jog--I convinced myself to put on a borrowed yoga DVD. Not usually my speed or my style.

But it felt really good ... and it didn't force me outdoors on a day when I probably shouldn't BE outdoors.

Ditto meditation. I'm lousy at forming the habit, but ... on those times when I AM a good boy and sit quietly for a half an hour ... it's a much needed break and helps to relieve so much of the stress that--for me--is inextricably coupled with the pain. It's also the only time in my waking hours that I REALLY close my eyes for any extended period of time ... unless things are bad enough to send me to bed for a bit.

As I say, I'm still far more inclined to burn my eyes on PubMed trying to find openings and opportunities for myself and others, and/or to jump on my bicycle and ride sixty miles, than I am to REGULARLY meditate or do something like yoga, but ... I think that there's some real payoff to those sorts of activities and I'm committing to making THEM a larger part of my life.

Whatever your path, though, I hope you find something that takes the sting--literally and figuratively--out of this most difficult journey.

Best,
Neil

[YGB]

Thanks Neil. I do need to find eye friendly solutions, but it is easier said than done. My well-earned nickname prior to LASIK was "perpetual motion man". I was always on the move and always doing something (that virtually always included my eyes of course). Yoga and meditation would certainly be eye friendly but I would in essence be taking on a whole new persona since that is the opposite of what I would normally be doing. Maybe this dry eye experience will teach me how to live at a more moderate pace since I was probably heading toward an early heart attack in my pre-dry eye life. Actually, probably not since I was not that stressed and I was quite happy and healthy before dry eye, but let me not digress. I do need to figure something out. I keep hoping for the ultimate solution out of this predicament ... less pain that will let me live well again! However, until that day comes, I need to take all of your good suggestions, do some soul searching, and learn to better adjust some of my lifestyle that I had grown accustomed to.

[Rebecca Petris]

I think my practical tips would include things like...

• Invest in Panoptx.
• Keep the saline handy.
• Take naps if possible. This does not get mentioned as often as it should - clearly benefitting a lot of people here.
• Max out on good sleep, good food, and exercise (not because of dry eye benefits but to keep depression/anxiety better controlled)
• Consider looking specifically for some new activities to do during the restless pacing-the-floor times - activities that can be a channel for the energy without putting you into the "Jeez I'm not accomplishing anything!!" emotional spiral. I have concentration 'blips' from time to time myself and it really helps me to keep a little list of 'rote' type repetitive, brainless tasks that I can draw on to plug that time with something I can actually do but without feeling crummy about myself when it's over.

[Lucy]

I was always on the move and always doing something (that virtually always included my eyes of course). Yoga and meditation would certainly be eye friendly but I would in essence be taking on a whole new persona since that is the opposite of what I would normally be doing. Maybe this dry eye experience will teach me how to live at a more moderate pace since I was probably heading toward an early heart attack in my pre-dry eye life. Actually, probably not since I was not that stressed and I was quite happy and healthy before dry eye, but let me not digress. I do need to figure something out. I keep hoping for the ultimate solution out of this predicament ... less pain that will let me live well again! However, until that day comes, I need to take all of your good suggestions, do some soul searching, and learn to better adjust some of my lifestyle that I had grown accustomed to.

YGB...........dry eye does bring one down a bit. If your eyes are seriously dry, you just cannot maintain your previous schedule. It's impossible. I worked for 5 years after my lasik-induced dry eyes and horrid vision as an administrative secretary. I'm still not sure how I did this, with eye drops lined up on my computer and sometimes installation every 15 minutes. I could not leave the office either as I was to cover phones in the president's office. Mainly, I went to the ladies lounge during morning and afternoon break plus lunch hours with an icepack on my eyes. That was my life. After work, I usually went straight home and to bed. Period. Or to the couch, eyes shut as I could no longer hold them open FOR ANY REASON. If I had been threatened with death, many times I could not have forced my eyes to remain open. Period. No choices. One time at work, another secretary walked up and said "napping are we?"......as I'd closed my eyes for what I thought was a private moment.

By the same token, I often said my job was the only thing that kept me going for this 5 year time frame. I HAD to get up, get ready and get there on time. It was torture and the only thing I wanted was to shut my eyes. If you're really hurting, your extracurricular stuff will be curtailed out of necessity. Being a Type-A isn't important if you have dry eyes. In fact, dry eye hurts equally, male or female, young or old, sedentary of active, rich or poor. You'll eliminate all the extra stuff out of necessity.

I remember meeting my husband for supper after work one day. We were "celebrating our anniversary." I hated being in that restaurant and wolfed my food down, couldn't get out of there quick enough. My eyes were on fire and I didn't care to celebrate. A co-worker asked me the next day if I'd enjoyed meeting my husband for supper. I was honest and said "no" because my eyes hurt too much and I should have known better.

That's just a thumbnail of some of my times. May your time be much shorter in duration. Be concerned with what HAS to be done. Rest those peepers at every opportunity. Twiddle your thumbs and listen to music with your eyes shut. The world will slow down a lot while you're dealing with this. I think the more rest and the less you "push" your eyes, the faster they will rebound.

[YGB]

Lucy - I truly hope and pray that you someday you will be known as the "Queen formerly known as the Dry Eye Queen".

I find it hard to believe that the eye companies cannot make a well lubricated contact lens geared specifically for dry eye sufferers. It just does not seem like it would be that complicated, but I guess I am oversimplifying things. The conspiracy theorist in me believes that there is too much money being made in selling artificial drops for life to DES people to incentivize eye company's to research moisturizing contact lenses for DES.

I have learned that there is not much research on DES being done in the U.S., but there are at least a few researchers in the far east that are working on DES research (ex. autologous serum came from the work of a few Japanese researchers).

Sadly, even the latest possible relief for dry eye was really just an accidental potential solution for DES sufferers (i.e. Boston Scleral Lens). The BSL was not invented to help dry eyes, but some DES folks will hopefully get to drink from the trough of this latest innovation. Maybe luck will strike twice with even better results on a future innovation.

I know this is not totally related to this thread, but I am just thinking about the difficult hand you have been dealt (as we all have to various degrees). I am searching to find stable hope that someday there will be an answer to our hopes and prayers. This thread has certainly helped me get at least a little closer to finding hope for a better future.

Thank you all. I suppose it's about that time to take the dog for a walk and cool my eyes down a bit.

[Rebecca Petris]

The conspiracy theorist in me believes that there is too much money being made in selling artificial drops for life to DES people to incentivize eye company's to research moisturizing contact lenses for DES.

Nothing against conspiracy theories but I think this one I can safely say "no friggin' way" to. The dollar value of the contact lens market far outstrips the artificial tear market. I think the industry is highly motivated to develop lenses that are dry eye friendly.

If you think about it it's not really that surprising there isn't a miracle self-lubricating lens out there yet. After all if despite all the research (and there really is a fair amount going on - the pipeline page is just the tip of the iceberg) we can't even reliably get stuff to wet our ocular surfaces properly, how much more complicated is the task of keeping a foreign object lubricated while it's sitting on the one surface and being swept every couple of seconds by the other surface.

[YGB]

So your shooting down what I thought might be a good conspiracy theory.

Then I will have to turn my scientist hat on and say that maybe they should just make a pair of glasses with a tube line (kind of like an IV line) that injects "tears" in the eyes every 5 seconds or so (kind of like a windshield wiper but rather than wiping away water, it adds water). We need a group of scientists sitting in a room brainstorming some ideas. I would like to believe that there are lots of scientists in the U.S. doing DES research, but in talking to a cornea researcher, he didn't know of any. Maybe he just doesn't know who these researchers are. I was just going by hearsay.

[Rebecca Petris]

Then I will have to turn my scientist hat on and say that maybe they should just make a pair of glasses with a tube line (kind of like an IV line) that injects "tears" in the eyes every 5 seconds or so (kind of like a windshield wiper but rather than wiping away water, it adds water).

As a matter of fact there is a group working on a product of this type right now. Got a call from them a few months ago.

We need a group of scientists sitting in a room brainstorming some ideas.

Couldn't agree more. I certainly don't mean to suggest that there is ENOUGH research going on, or that the research is of the right type. For starters, I would really like to see some really good epidemiological studies. This is an important precursor because it can show how important the issue is, how big the need is and where the need lies - which have to be demonstrated to justify research projects/expenditures.

[YGB]

[QUOTE=Rebecca Petris]As a matter of fact there is a group working on a product of this type right now. Got a call from them a few months ago.

Great! I want to be one of the first customers when this hits the Dry Eye Shop (and I won't even ask for royalties since the product is in development already ).

[Lucy]

YGB, ya gotta know we were "talking and joking" about this type of thing 6 or 7 years ago in another place in cyberspace. Really! If I remember right, it was my invention. (Of course, me!) It was even before we knew of Dr. Holly's drops because I said it would squirt Theratears right in your eye as needed. Ahhhhh. another lifetime ago. (With dry eyes, 7 years just feels like a lifetime.)

[Elegiamore]

Inspired

Gosh, I'm really inspired by all these stories of eye survival. I know I have it good compared to most of the rest of you, as I can go long periods without thinking about my eye.

However, depression from dealing with numerous health problems, like Lucy and others, is so hard to fight. If I walk for my health, then my eyes get messed up from the wind.

The holidays are a particularly difficult time, with all the allergy-creating Xmas trees, visits in stores (Home Depot just about did me in!) and the forced cheeriness everyone who is depressed faces.

So everybody take special care of themselves right now. I'm trying to avoid isolation, which for me right now is tough, but I'm hoping to make new friends on the site. Best wishes, Elegiamore