Insanity

[Michael2]

Sometimes I feel like I'm the only sane person living in an insane asylum

PAIN, constant, chronic is debilitating in nature. I've found that it crushes your liveliness, spirit, and willpower. When the pain subdues for a few moments, I'm completely back to myself...but it hits again, I'm imprisoned in my mind.

But deep down I remember the person I was before this happened...a happy person, with no psychological issues, no complaints, loving life (and i'll get back there again someday)...and I realize I've been able to hold on to my sanity despite months of constant pain. I also realize if the pain was lifted tomorrow, I would have no sense of depression.

Yet, no one seems to understand. 'If it's just dry eye get over it.' 'Must be psychological.' 'Are you depressed from something else.'

The other day we had a family dinner. I struggled through the whole day to keep my eyes open, and more than anything wanted to go to the family dinner. Pushing myself to go to the meal was so incredible hard, sitting in constant focus of pain, suffering through that mental agony...but I did it because it's not all about me, it's about being there for my family member's birthday. 6 months ago, going to that dinner wouldn't have been a second through. Now, it's as difficult as running a marathon...eye drops, pain meds, etc, etc. Then, after dinner, family members bring me aside and tell me how poorly I acted and how quiet I was and how I should just push through the pain. 'Is there something else wrong here that we need to talk about.' 'Other people with chronic pain don't act like this.'

I know I'm in constant pain, and I realize the effects it has on your brain. I think those who have not experienced chronic pain like this cannot truly empathize.

But any suggestions with how to deal with this socially and with family members? All these people who looked at me 6 months ago as vibrant and ambitious now look at me as insane and crazy. bummmmer. if i hadnt lived this experience, I could never have imagined it

[ringo]

Hi Michael...

I have experienced every single sensation and emotion you described in your sad post. I could have written exactly the same post, I know also that noone understands, not even my closest people.

But I do understand your pain, more than that, I actually experience your suffering both physically and emotionally. I know what it means to attend a gathering with friends or family, especially in a strongly air-conditioned restaurant or bar. There is nothing to enjoy about the experience. The only thing that is there is the pain. An the anxiety of how others perceive the whole thing.

Most of the people here on this forum surely experience the same suffering, and some even much more than that. The only thing that can alleviate this suffering and stop it from driving us insane, is serious treatment. And emotional support of course, which I have found here on this forum more than anywhere else.

You said you are going to return to the happy person you used to be one day. I have exactly the same hope aboutmyself- I used to be cheerful, abitious, good looking, happy person, who enjoyed every minute in life. I used to have so many friends and go to so many places; I used to have an excellent job that everyone envied, and I loved playing computer games....I miss them so much... I liked going to dance clubs, dressing up, did not give a toss, and was not aware that there is a strong air-conditioning in night clubs. I loved having a walk on the beach with the wind blowing in my face and hair. I loved driving. I loved meeting new people. I loved the way my husband was looking at me with admiration and pride, not pity, worry and helplessness.

All these things and many others that made life meaningful and worth living have gone now. But I have hope that all this can and will come back. Becoz with treatment though very slowly, I have some improvement, at my worst I would have been better off dead, and I am not exaggerating. I thank God, this forum, my doctor, my husband and my own efforts that I am not in that darkest place any more. So, may be, I will be back to that person who used to enjoy life, some day, again. I pray that all of us can go back to their healthy selves.

Please hold on to the hope you have. It is not in vain, and it is something very realistic; it can and will happen. Dreams do come true. Especially when we work hard to achieve them.

What is your condition currently and what medications are you taking?

God bless you,
Daniela

[Michael2]

Thanks Daniela for the kind words.

My condition is severe dry eye that started overnight with some contact lens intolerance and progressed to debilitating pain, about 6 months ago. No real reason, my body's in perfect health otherwise. I was on azasite which helped somewhat, and came to the conclusion that I have pretty bad MGD and possibly ocular rosacea. Of course, no ocular signs so alot of people have dismissed the pain.

I'm currently on doxy and going through the IPL treatment (have done two so far), and have seen slight improvements...my eyes felt perfect the night of the second treatment but regressed completely by the next day, so hopefully over some time I'll have some more long lasting improvement.

I've also been lucky enough to find a pain drug for me that makes the pain tolerable for a few hours of the day, and doesn't drug me out. Kind of like a break from the pain for an hour or two a day, to go read or use the gym...which is very nice.

If IPL doesn't work I realize there's alot of other options out there...your story has been inspiring.

I can't wait until I wake up pain free, I know I'll never look at life the same way. But for now, I'm making do...just trying to keep my sanity

[ringo]

I think you are on the right track with the IPL treatment. I was thinking of trying this option as well. Please keep us posted on how you feel as the treatment progresses.

Doctors were never able to determine whether I have ocular rosacea or not; and my current doctor says that in all cases this diagnosis is a good guess at its best. I have often had "plugged" meiboian glands in the past, but not any more; at least before, I was able to see them with naked eye, and feel the extreme discomfort as well. Now if they are still plugged, they are not so "obviously" plugged, so doctors do not think I have a problem in that area.

I think that you might benefit from a "cocktail" of treatments if you have severe pain. I have found with my dry eyes that when I was trying one medication at a time, it was not doing anything; but when doctors started prescribing combination of treatments, then improvement was noticeable. For example, eye drops might not do much on their own; but if you use them along with the IPL treatment, both might potentiate mutually their effects.

The most important thing is maintaining the certainty that things will get better. One day you will wake up pain-free. It might take some time, but it won't be forever; and after all we are lucky to live in the 21st century-- new medications are on the horizon, potent and efficient, and sooner than later they will be available to provide relief or even cure. Just only 20 years ago people had no option but to suffer with only primitive artificial tears resembling plain saline solution. Those people are old now, and they really have a reason to feel down about their condition. But for us, there is still a great hope that the suffering will end soon. So cheer up, things are not as gloomy as they might seem when the pain overtakes us.

[odydnas]

Michael and Daniela,
Your post looks like it could have be written by me. It's tough, no one around me really understands and just thinks that I'm making it up or making it seem worse than it really is. And with the holidays and all these required family things to go to, its really tough on me mentally and physically. I feel trapped in this broken body...ugh. I no longer look at other people and my relationships the same anymore (in both a good and bad way, depending on the relationship).

I find that it really really helps to get a DE buddy to talk to or email regularly because at least it's someone you are in constant contact with that understands, especially if your social life has taken a beating.

[ringo]

Thank you for sharing , Odydnas,
Since I came to this forum, I have realized, and it has greatly helped my mental health, that I am not insane, and that my tolerance for pain is not too low, as some people, and even doctors have declared.

I used to look forward to the winter holidays, my favorite is Christmas, and I have a birthday on New Year's Eve. However now, their approach triggers the same anxiety as you, Michael and I believe others have about social gatherings. It is so sad really...

I would also be happy to have a DE buddy, and stay connected, but I do not know how to approach someone here with such a request...

[odydnas]

Hi Ringo,

Haha yes, it can be an awkward and funny request. I think I even remember someone starting a thread a while ago looking for a DE buddy. For me, I think I just PMed another member with a question, we turned out to be around the same age going through the similar changes and frustrations due to DE and just got to talking. From there on, we just became friends even though we are on opposite coasts of the US.

I love DEZ because people are so friendly here and they get that DE isn't just a physical problem -- its effects extend to our career, image, social life, etc. Like Rebecca has said in the sticky, if you see a post that strikes a chord, reach out and PM that person. I believe that many people, esp those who are not blessed with strong support from friends and family, are very responsive. And of course, you can always PM me =)

And I realize I didn't answer Michael's original question about dealing with this socially. People will always misunderstand and they will always judge, no matter what it is. It's just human nature. Some people are more emphathetic and giving than others, and I would seek out the company of them, and drop the ones that make you feel worse. Of course, this is impossible when it comes to family of which you can't escape, especially during the holidays. This might not be the best answer, but I've learned to both suck it up or stand my ground, depending on what the situation calls me. For example, I will suck it up and go to family gatherings and do my best to be cheerful and make it enjoyable for everyone else, but I will stand my ground if someone wants to get the fireplace going. I also find that lowering my expectations of others is also helpful psychologically. Ok, I know none of this sounds appealing nor does it sound inspirational, but it's what works for me.

I like the "kick in the butt, suck it up" drill seargent type of counseling therapy, and I really like this article by Dr. Lastname.
http://www.fxckfeelings.com/2009/08/...urse/#more-319

Ok, it might not exactly apply to your situation, but hopefully some parts will help you.

[mary kenny badami]

To ringo:

I agree with odynas, that the informal and haphazard process of finding the sort of person whom we refer to here as a "dry eye buddy" usually involves noticing someone whose situation, perspective, and/or geography makes them sound like a person we'd like to spend time with . . . whether online or in so-called "real life." A few Private Messages usually establish whether this is someone who has the time and interest and temperament to continue such a relationship.

I want to acknowledge my best and earliest dry-eye-buddy, who is known here as "Lucy." She read my initial posts on another Bulletin Board nearly ten years ago at a time when everyone there apparently assumed that I was a man . . . I had said that I was a college professor, and I was using a sex-neutral posting name ("gloomsburg" -- it was a joke which I invented because my real-life town is named Bloomsburg) . . . so having imagined me sitting by a fire smoking a pipe while wearing a fabulous masculine jacket with leather patches on the elbow as I graded papers, she and others on the BBoard were shocked when I replied to a thread about whether we ladies were using makeup after our Lasik operations. They started a new thread entitled: "glooms is girl!"

And then further good fortune: there came along Rebecca Petris, and "Ethel," and "Moose," and a fellow who called himself "sparkyman" who sent everyone on his buddy list at least one joke a day . . .

To odynas: Oh my goodness, I know that people will differ in their situations and their ability to relate to "Dr. Lastname's" advice, but given my personality and post-Lasik issues,
that was one of the funniest and most inspirational (albeit tough-love) articles which I have read in a long time. LOLOLOL !

To Michael: I know this may be hard to believe, but one of the kindest pieces of advice which I was given in the early days of my post-Lasik problems came from a wonderful doctor who simply ended his every public and private post by saying: "Hang in there!" I did. And eventually things got a great deal better for me. I hope that the same will happen to you.

[ringo]

Thank you Mary for the assurance, and for sharing about your DE buddies

I have never even dared to dream that I would have the chance to talk to so many people who understand and experience my horrible predicament, so even this is a huge blessing for me! I can only hope to be as lucky as you were finding such great DE buddies... I will have to find someone who does not mind that I live all the way in the Persian Gulf in Dubai!
I like the Prof. Gloomsburg story, it sure put a smile on my face! it is so inspiring when I see that despite the troubles, people like you preserve their cheerful and positive optimistic attitude, and they are still capable of a good joke, and of the strength to continue with their life despite the burden of dry eye...

Odydnas, thank you for the encouragement, and for the wonderful advice from Dr. Lastname!!!! It made my day.... i definitely feel so much better after reading your post! I think that in the end this dry eye thing might actually do lots of positive things for me as well-- it is bound to make me a stronger, more sympathetic, braver, knowledgeable, patient, survival expert!!!

[Guest]

Loved that article Odydnas!