A dark, dark place.

[Rebecca Petris]

There is a dark, dark place where many of our members have been during some part of their dry eye journey and where some of you are right now.

It's a place of shock, of deep depression, of sometimes paralyzing anxiety.

It's a place where you are consumed with fear that things will never, ever get better.

It's a place where you obsessively compare your situation with the others posting on the boards, alert to every shred of similarity between your situation and that of someone else who has been here for, perhaps, years and not gotten better. You desperately try to find some strand of hope that there is someone else like you who HAS gotten better, but since the ones who do don't hang around boards like this, you don't see them, so they don't exist.

It's a place where you read the bulletin boards daily and become oppressed by the idea you're not "handling" it well - that there are others much worse off who are handling it better.

It's a place where some of you are consumed with guilt over things you think you could or should have done differently that might have prevented this. Or guilt over the impact on your loved ones. (It's so much easier to give to those in need of support than to have to be on the receiving, needy end for awhile.)

It's a place where in your imagination you live the entire rest of your life in advance subject to the same intensity of suffering you're experiencing right now. And that picture terrifies you.

It's a place dominated by fear. Fear of continued pain. Fear of permanent change to your life. Fear that your eyes will never be attractive again. Financial fear. Occupational fear. Family fear. Fear, fear and more fear.

To all of you who are there right now, this is what I would like to say:

1) IT WILL GET BETTER.

I can't guarantee your eyes will get better, though in most situations you have a darned good chance if you are patient, persistent and methodical.

But I can nearly guarantee that in time you will FEEL better, because you will find yourself better equipped to cope. You will move beyond the shock and even the depression. You will not feel that weight dragging you down all the time. You will not feel frantic with pain all the time. You will sleep better, you will have more energy, you will once again be able to do many of the things you love best. You can feel normal again, even if the dry eyes persist.

2) GET A DRY EYE BUDDY.

Or a few. And use them, and don't put yourself on a guilt trip for doing so.

Some are blessed with supportive spouses, family, and friends and some are not. But almost all suffer from the absence of someone physically near them who actually UNDERSTANDS and doesn't ever get a kind of distant look on their face when you talk about it.

One thing I am truly proud of about this little community of ours is the many kind caring souls here. I know there is a ton of supportive behind-the-scenes activity going on, private messaging, phone calling, even people meeting up. If you have not tapped into that, and if you're in a rough spot, please reach out! If you see someone's story that strikes a chord, private message them. If they don't respond, don't take it personally, but do try someone else. If all else fails, call our office, and if you don't reach me leave a message. No staff here, just me, but I try hard to make myself as available as possible.

3) GET HELP for depression.

There comes a time with the emotional/psychological impact of eye problems begin to eclipse the eye problems themselves. Depression and anxiety will increase pain and they will cripple your ability to advocate for yourself effectively in the medical world, at work, etc. It is very important to be proactive about this and address depression and anxiety directly. Know that suicidal thoughts really ARE common during the crisis stage of coming to grips with this painful, potentially chronic disease. Do the sensible thing and talk openly with your family and your healthcare provider about it. Get treatment.

Some eye doctors may tell you that anti depressants may increase dry eye. Yes, that's possible, but a lot of things are possible and you can't worry about all of them - you have to keep it in perspective. Dry eye won't kill you. But depression can. Know that depression is normal during this experience, and deal with it head on.

4) DON'T BE AFRAID to make short-term alterations to your life to accommodate your current needs!

You don't have to live the whole future right now. Let yourself go through this hard time, cut yourself some slack, let it be OKAY to ease off many activities that are too hard on your eyes - it doesn't mean you'll never be able to do those things again. It means you need a break now.

5) I CARE! I'm so sorry you're going through this, but I am glad you are here and if there is anything I can personally do to help, let me know.

[stephgurl1986]

wow...Thanks, this was written in such a wonderful way...
I had a horrible day today, I even went home early from university because of the pain...
I think this forum really helps me...Thanks

[brd888]

thanks

thanks Rebecca, my biggest help in dealing with my dry eye has been The Dry Eye Zone. And the biggest problem with my dry eye is not the condition itself, but the draining effect it has on my ability to cope with the ordinary ups and downs of life.
Thanks for the site,
Bruce

[IanJ]

Thanks Rebecca..........so may truths in your post, it's a relief to know that there ARE people out there that FULLY understand all aspects of it all. Thanks again.........

To touch on just one of your points..... I'm soooo glad that I have Tracey. I developed dry eyes just 6 months before we were married and I couldn't ask to be with a more understanding person........I have thought about it from time to time and life without her and her support would be really scary!

Ian.

[Amy09]

this post is awesome... you described exactly how i was when i first had to deal with dry eye, but everything you said at the end is so true... things do get better. here's praying for patience and strength for those that are just starting to cope with dry eye so that they eventually also reach the light at the end of the tunnel!

[Silverlady]

Wow!

Thanks Rebecca,
You put it into words so well. This site has been a big help in guiding me toward the care I do of my eyes now and also with arriving at peace within myself with this stuff.

Thanks again,
Billye

[Dryeye22]

Thank You Rebecca,

I could not have said it better myself. Im still going through it, and its nice to know you have all been there too.

Heres to getting better

~Erin

[stella]

Thank you SO much Rebecca for that post -
I have printed it out to show friends and family who just DONT UNDERSTAND at times how desperate we can feel
Stella

[MJ]

Rebecca,
It took a woman of absolute compassion and courage to create this website ... and to write that post.

You've had your own very difficult journey and yet on its path you've stopped to care for so many others who were in their own very dark place. You showed them with encouragement and hope to look for the light at the end of their own dark tunnels and created a safe place for them to put their burdens down for awhile.

I think that's truly remarkable. People like you don't come along very often in this world. But when they do, the rest of us are very thankful inside our hearts. MJ

[madarka]

to rebecca

ur words mean so much to all of us.u r truly a MOTHER THERESA in this forum

[Rojzen]

a salute to the ultimate dry eye buddy

Rebecca's description of that dark, dark place can stand as a powerfully truthful testament to what life is like, after this disorder sets in. . .and as an equally powerful testament to the fact that life DOES get better, and that there is inevitable healing and a return to the living. . .

I salute you, great Rebecca, for the acuity and compassion that have opened you to the idea that those of us who get dangerously depressed must consider anti-depressants. The spiral of hopelessless, and our families'/loved ones' utter confusion over what we are experiencing, so often stand in the way of our taking the single most important step for freeing us to SEEK the help that will heal us to a much stronger place. Nine years ago, that step, for me, was Prozac (now replaced, often, by newer, more complex drugs). Without a course of it, I would not have been able to summon the focus that got me first to Dr. Gilbard, and then to Dr. Tseng, and then to the master opticians who saved my life with moisture chamber glasses. Today, if one does not embrace anti-depressants, let it be known that countless other options may be considered, such as amino acid supplementation targeting the neurotransmitters that affect mood and perception (not to mention so many other nutritional and energy-medicine approaches). But the key is to get to a place where you can ask for, nay DEMAND, help, and it will come.

YES: IT DOES GET LOTS BETTER. . .and LIFE MAY EVEN BECOME BETTER THAN IT WAS BEFORE THE DES. . .Be assured of that. . .

Thank you, again, Rebecca. . .You are our dry eye buddy extraordinaire. . .

[liz56]

Thanks, Rebecca.

This part of Rebecca's posts particularly rings true for me:

"It's a place where some of you are consumed with guilt over things you think you could or should have done differently that might have prevented this. Or guilt over the impact on your loved ones. (It's so much easier to give to those in need of support than to have to be on the receiving, needy end for awhile.)"

My husband and family are so nice and doing everything that they can for me. My husband is here with me and is always very considerate. My family is not nearby, but they are calling me every week to check in on me.

My biggest emotional problem with Epithelial Basement Membrane Dystrophy causing recurrent corneal erosions is fear, what's worse, it's a fear of sleep, a fear that my condition will never get better, and, as I lose sleep (waking up every two hours to put in Genteal Gel), I am more emotionally distraught.

I have stopped trying to figure out my problem out loud with my family members, because as I talk about the details, they just say, "Well, you are getting better, now, so don't worry about it." I need to give them that, I think, and stop talking with them about it, because they don't need to waste their time and energy worrying about me.

However, I cannot help but think of what will happen to me in the future. I am on a conservative regimen with drops, and I have not had an erosion in 23 days.

Perhaps I can share my biggest question with you.

My problem is unclear to me, so I don't know what the prognosis is.

I woke up one morning on my face, and through the day, I felt a stinging in my left eye. (I don't know if I dragged my eye on the pillow and caused an abrasion or if I had a spontaneous erosion.) So, in the evening, when it did not go away, and I noticed that a little blurriness would not go away, I went to urgent care. The doctor gave me tobramyacin (sp?) and told me to take it through the weekend. I did and felt fine for the next month. Almost exactly a month later, I had a recurrent corneal erosion in my sleep, which sent me to my family doctor. He sent me to an ophthalmologist, who prescribed Genteal Gel at night for a month. A week later, I had more erosions, called his office, and, since he was not in, saw another doctor, who diagnosed RCE and sent me to a corneal specialist, who put me on Muro 128 5% drops (for daytime) and ointment (at night). After two weeks, things were healing up, but I started getting erosions after going to sleep for two hours, so my ophthalmologist took me off of the muro ointment and put me on Genteal. Things have been okay, since I stopped the Muro ointment. Last night was the first night I did not sleep in the reclining chair (which keeps my head still), and I did okay last night.

Does any of this sound familiar? Is there a chance that I will be able to heal up and just manage my EBMD with drops and avoid surgery? Do most people who have EBMD with RCE have surgery? Will surgery, like stromal puncture and PTK hurt my vision or fail to resolve my RCE's? I have so many questions, and my doctor says that I need to heal up for six months, see how it goes, but may be able to manage. I still have fears.

Thanks to anyone who read all of that and cares to respond.

[Rojzen]

sleep as essential to tissue healing; soft bandage lenses?

Liz 56 - - Just wanted to share that at the onset of my eye problem, I, too, developed an intense fear of sleep, also associated with profound fears about what the future would bring. Awakening to the unknown of each day was a real deterrent to giving in to sleep. . .even though sleep time was the only escape from the crippling anxiety of the eye disease itself. . .

Would it at all help to think about how essential sleep is to the repair of damaged tissue? The docs of mine who address my fibromyalgia often remark that the pains of that disorder may be caused by the body's failure to achieve restful/restorative sleep, which is essential to muscle repair. .and essential, on a daily basis, for all tissue repair. . .In other words, if your corneas do not get enough sleep time, this alone could slow their healing. . .Yes, deep sleep will dry the eyes, and make eye-opening a little risky, but there are also palpable costs in not sleeping deeply. . .

In my case, after not sleeping more than about 3 hours a night for the first 4 months of my illness, I somehow figured it was time to get sleep help. . .A psychiatrist whom I saw for help with my crippling anxiety prescribed sleep aids, but not only didn't these work - - they failed to get to root of my sleep problem, which was the tremendous depression and anxiety.

Those days, Prozac was fairly fresh and new, and on a small dose of it, after a week or two, I finally started to sleep through the night. . .Yes, it was stimulating, but once the depression faded, I could sleep, stimulation notwithstanding. . .Today, we have a long, long list of anti-depressants to consider. . .(I wouldn't, though, sell the older ones short. . .)

Your family cannot possibly grasp the intensity and depth of the anxiety that sets in with RCE and all ocular surface disorders, even though there are now studies documenting that this class of disorders ROUTINELY triggers tremedously high rates of depression and even suicidal ideation. . .Consider moving beyond family, and getting to a professional who can aggressively attack the anxiety/depression with you, and see if sleep then comes back. . .

Do all those good things, while continuing to use the Genteal, or possibly one of the polymers, like the Dwelle product line sold here. . .

In a nutshell, I'm suggesting putting the depression/anxiety front and center, and worrying about the RCE secondarily, just for now. . .so that when you come out of the blue state, you have the advantage of healing sleep AND even a possible sense of positive challenge. . .

On a related front, have any of your docs ever considered bandage lenses, at least for nighttime wear? Dr. Scheffer Tseng pioneered this approach for RCE years ago. . .He fitted sufferers with these soft, large lenses, instructed them on how to rehydrate and remove them safely, and, in many cases, broke the cycle of RCE for them . . .I wore bandage lenses for a while, and i think the only reason they were not a big help was because my underlying severe MGD makes it impossible for me to keep the lenses properly coated...When I wore them, they were quite comfortable. . .I used one once, as well, for a month after corneal debridement. . .and it worked great. .Healing was complete. . .and ultimate removal was painless and damage-free. . .

[liz56]

Rojzen, thanks for your story and supportive words, and I know that you are right about getting sleep. I moved from sleeping in the recliner to the bed for the last two nights and made it through both nights without erosions. I woke up a couple of times to put in more Genteal Gel, but, I fell right back to sleep, and I slept deeply without my eyes sticking in the morning. I have been feeling a lot more in control of my days and will continue to try. If I do not manage to work out something that allows my body to rest and heal up, I will seek help, because I do think that I will need help to get through this weird, unexpected thing that is happening to my body.

Thanks for giving me a positive spin on something that was turning out to be too negative with my recent outlook!

[texaseyes]

serum?

I don't know if it would help or not, but have you tried serum drops? They are supposed to help heal the surface of the eye and keep it healthy.

Texaseyes