When do you call it quits?I

[Guest]

So here's my question...when do you stop reading, booking appointments and obsessing over your dry eye? How will I know I've done everything and this is just where I'm at now?

Im bipolar with mixed traits (anxiety and OCD) so this disease has hit me hard mentally. I research all day, I have made multiple appointments with doctors. Most said initially, glands are plugged and you have foamy meibum. Last check I was told the meibum and the glands themselves are like 75% better. I'm not in constant agony but I'm also on a weak steroid. Eventually I will have to come off that which is scary as hell. I'm pretty sure the only reason I'm doing well is because of the steroids to be honest.

So im just lost...I'm mentally not here for my wife and family and I want to be. I just want my life back. This has been so mentally hard for me....you all know what I'm talking about.

In just scared, sad, tired and confused. Some days I'm positive and ready to kick ass and some days I'm just depressed I dont have my old, easier life back. I don't know when I'll just be able to say, this is as good as it gets and just accept it and move on.

Im wondering how much of this is mental. Am I causing my own problems to be worse, am I magnifying them?

Sorry if my ghougjys are scattered i red I just want to move on with my life and I don't know how to do that. And I feel guilty slightly. Because I know I'm doing better than some of you out there...yet instead of being happy with that I obsess over getting to be normal again. I'm lucky I have the greatest wife on the planet. She helps me everyday...she said she would never leave me as long as I kept fighting. I have the most beautiful, kind and sweet 6 month old daughter that looks exactly like me. I'm lucky, I just don't know why I can't see it that way.

I wish there were more active members to speak with...then again I'm glad there are so few of us here as well. Thanks for listening, Amy advice would be appreciated.

[fernellen]

I, too, am ready to call it quits. Since this hit 6 weeks ago (after being relatively symptom free for 10 years
)I have been felt like this is the end. The specialist says just one more procedure, one more eye drop and I will be through the worst. I just gave up my part time job. I am making plans to move in with my daughter. I just don’t have the strength

[Colin P]

Dowork... Im the person that told my GP its either me, or my eye! And was going to take out my own eye outside the hospital. Later that day i commenced a 7 week stint on a mental health ward, followed by anti-depressents for next 6 yrs. So i think im qualified to answer your question... It's on page 2, i posted it a topic ealier this week titled 'The power of depression'.

[Guest]

Dowork... Im the person that told my GP its either me, or my eye! And was going to take out my own eye outside the hospital. Later that day i commenced a 7 week stint on a mental health ward, followed by anti-depressents for next 6 yrs. So i think im qualified to answer your question... It's on page 2, i posted it a topic ealier this week titled 'The power of depression'.

I saw the post and I can't agree with you more. However the doctor has prescribed me lamictal, it's known to rarely cause Steven johnsons syndrome. I'm a bit freaked out to take it to say the least. But I think I'm headed that route.

[pythonidler]

How will I know I've done everything and this is just where I'm at now?

No matter how much you've think you've done everything, you haven't done everything. This is true for both dry eye newbies as well as veterans.

I just want my life back

I think everyone on the forum has felt that way at one point or another. To be honest, I'm still in the process of doing that.

Some days I'm positive and ready to kick ass and some days I'm just depressed I dont have my old, easier life back. I don't know when I'll just be able to say, this is as good as it gets and just accept it and move on.

Part of the struggle is realizing you will probably never be 100% back to where you were before you got dry eye. The goal is to get to a manageable state - manageable here meaning low pain or discomfort most of the time. That said, if you're in a significant amount of pain, you should NEVER settle for your current situation.

I just want to move on with my life and I don't know how to do that

I'm not a psychologist, so there's not much I can say on this. But I will say one thing - you do have perspective over your own struggles. You've been at a low point in your life because of this, and if you've gotten significantly better, I suppose you can be grateful for having climbed yourself out of the hole.

[hopeful_hiker]

Im bipolar with mixed traits (anxiety and OCD) so this disease has hit me hard mentally. I research all day, I have made multiple appointments with doctors.

I can really relate to that. I am not bipolar but very close to that with anxiety and OCD being my main issues. On the one hand, it is beneficial to seek new ideas for treatments, on the other hand it may be detrimental. For instance, reading horror stories about dry eyes sent me into my first panic attacks as my DED was unfolding. Since you have OCD, you may be familiar with the common loop/cycle that we get trapped in. We keep giving in into certain rituals or activities that give us immediate benefit. Dry eye sensation > anxiety > read more about DED > feel better > repeat. To me it makes sense to allow yourself a certain amount of time for research instead of constantly reading about dry eye.

I'm pretty sure the only reason I'm doing well is because of the steroids to be honest.

Are you on Xiidra? Or Restasis to control inflammation long term?

Some days I'm positive and ready to kick ass and some days I'm just depressed I dont have my old, easier life back. I don't know when I'll just be able to say, this is as good as it gets and just accept it and move on.

What is stopping you from being in your old life? To me pain management is priority, sensation management is second. If I only noticed my dry eyes in a dry heated store or on a very windy day that would be a success to me. Even if I needed to put eye drops 2-3 times daily and do some additional basic routine, that would be fine.

[Guest]

Pythonfinder, I sent you a PM

hopeful hiker, I'm on restasis and hoping when I taper the steroids, it's effective as a stand alone...however I'm concerned it may not be as good at managing inflammation as I think. But before I jump to conclusions I'll have to see...just scary to think I could regress back to where I was.

Whats stopping me from my old life, well trying to claw to get it back is the main issue. The "work" I put into this is also taking me out of my life. I'm stuck in my own head trying to find a better solution. It's good and bad, it's lead me to better treatment yet also locks me in a cage of my own thoughts.

I am hoping that eventually things things will become easier for me to accept. A lot of this is accepting my reality now with dry eye. This was years in the making, the abrasion sent me over the edge into a horrible place but my eyes were dry well before that. I was just lucky to be pretty much symptom free prior to the injury.

Sometimes I still feel like I'm in an episode of black mirror and eventually I'll wake up from this nightmare....but that's clearly not the case.

Thanks for the replies and thanks for listening.

[Guest]

Ok so let me add some weird shit to the mix. Today, ZERO dry eye symptoms and I mean none. This is part of the anxiety. Not knowing what's going to happen next. Am I complaining I feel good today, you bet your spaghetti o eating ass I am NOT complaining. I'm soaking this day like a sponge. But just dumbfounding. But I'm grateful for today!

[Hokucat]

Dowork, that's good news today you have zero dry eye symptoms. That means your glands still have the ability to function normally. In the past few days, have you done anything differently, like started taking new supplements, eating some different food, etc. than you normally do? Sometimes it's things like that which affect your meibomian and lacrimal glands from the inside out. My diet is the MAIN reason my glands function better again (after probing first, but that's because I had scar tissue, sounds like you don't).

[Guest]

Dowork, that's good news today you have zero dry eye symptoms. That means your glands still have the ability to function normally. In the past few days, have you done anything differently, like started taking new supplements, eating some different food, etc. than you normally do? Sometimes it's things like that which affect your meibomian and lacrimal glands from the inside out. My diet is the MAIN reason my glands function better again (after probing first, but that's because I had scar tissue, sounds like you don't).

I have the oddest stuff going on. So a month ago I had only 2 truncated glands (thankfully) but the meibum was thick and foamy. Last visit was right before my erosion and he's like man these glands are 75% better than the last time I saw them. That was the doc that makes my serum tears. My original opthamologost saw them and said the same thing, he's like these glands look good finally. So yes, I can produce better oil now...however, I don't know how to adjust my routine to that and I think that's the issue....

so im trying to keep track of things, I should keep a journal...I feel that the erosion occurred because I had just got my serum tears and wanted to replace my theratears pf with the serum. The serum is isotonic, feels best in my eyes. But I have EBMD so I need something with sodium and electrolytes like theratears to keep that epithelium locked down better. So I think the switch lead to the erosion. That whole week I felt like a million bucks. Then boom. Was heartbreaking. Again, I'm thankfully feeling like I'm back on that good track again today. But I need to keep these things in mind.

I pulled back on the length of my compresses now that there's no glue coming out...I can do 5 mins at 45C and feel great. Now if I go heavier like in the past when I was clogged, I get really dry I believe because I'm draining the clean oil too quickly.

so it's this balancing act that's so stressful. I need a PHD in being human lol. Wtf!

Thanks for the replies. I'm just at a loss sometimes. But I'm going to enjoy today and leeep my eyes off the computer. Just writing this and I'm feeling a hair off.

[Colin P]

Hey y'all.. I've just had my worst day for while, maybe a 3 out of 10 (i've had 10's). I noticed 1hr into my day, im aqueous defficiency, so my routine is - bowl of cerial then a shower for maybe 20mins... Eyes get off to best possible start, now 1st time for a while on the drive to work i was squinting due to car windscreen and the magnified UV rays coming through it. And co-incidently i had my worst night sleep for a long time also, a daft dream (im not on any medication for 3 months now) woke me 3 or 4 times, plus my dog sneaked in and jumped on my bed whom i couldn't be botherd moving, his is like a hot water bottle and eventually at stupid o'clock he got his marching orders! Due to the sheer heat he generates. Finally i have a garage mechanic messing me about which is stressing me out. The point of the story is, last night whilst attempting to sleep i was red hot, and stressing about this butt hole at the garage who figuired in my odd dream, has had my motorbike a week now and not answering the phone. Ffwd to today - Well stressed, Worst my eyes have been for a while, cursing myself for posting back on here and tempting fate. Is it just co-incidence stressed and worse dry eye symptoms??. Got my bike back now, stress gone, looking forward to a dog free, stress free, good nights sleep + improved eyes tomorrow as a result. Stress really messes me up and i'm sure it exasperates my 'dry eye'..
# i'm G.A.D generalised anxiety dissorder - i stress out quicker and worse than everyone else.

[Guest]

Hey y'all.. I've just had my worst day for while, maybe a 3 out of 10 (i've had 10's). I noticed 1hr into my day, im aqueous defficiency, so my routine is - bowl of cerial then a shower for maybe 20mins... Eyes get off to best possible start, now 1st time for a while on the drive to work i was squinting due to car windscreen and the magnified UV rays coming through it. And co-incidently i had my worst night sleep for a long time also, a daft dream (im not on any medication for 3 months now) woke me 3 or 4 times, plus my dog sneaked in and jumped on my bed whom i couldn't be botherd moving, his is like a hot water bottle and eventually at stupid o'clock he got his marching orders! Due to the sheer heat he generates. Finally i have a garage mechanic messing me about which is stressing me out. The point of the story is, last night whilst attempting to sleep i was red hot, and stressing about this butt hole at the garage who figuired in my odd dream, has had my motorbike a week now and not answering the phone. Ffwd to today - Well stressed, Worst my eyes have been for a while, cursing myself for posting back on here and tempting fate. Is it just co-incidence stressed and worse dry eye symptoms??. Got my bike back now, stress gone, looking forward to a dog free, stress free, good nights sleep + improved eyes tomorrow as a result. Stress really messes me up and i'm sure it exasperates my 'dry eye'..
# i'm G.A.D generalised anxiety dissorder - i stress out quicker and worse than everyone else.

Same, I beat myself up hard, hold myself to super high standards, I'm bipolar with mixed traits (anxiety and OCD). So I completely understand and I can feel things get worse....if I get anxiety and my face tenses up, drier eyes for sure. Same with depression..

[Colin P]

How someone beats depression, anxiety or whatever brought about by this chronic illness without medication is a better man than i am!. I couldn't do it; but now it's all but cleared (on its own accord) my dry eye is much better and i can get on with my life again. I won't be posting much longer cos i want to put this behind me, and a long long way in the distance, definatly not looking on here for reminders, topics that make me shiver.. This is the story of someone that used this site, it was vital in my hour of need and now needs to leave, but also wants to give something back to the next/current wave of folk who think they can't go on. I read testimonies on here from guys who have escaped the evil clutches of depression, now it's my turn, and it's your turn next!. Maybe not tomorrow, or the day after, or the day after that? But it'll lift, just as quick as it came as and when.
one last bit before i go.
While you have it, it feels like your in a game of chess against a grand master, who just keeps putting you in checkmate, every move you make is not a positive move, it's just moving away from check, and bang checkmate again, over and over again. If you hang in there long enough, your enemy on the other side of the board will eventually try something else, and you escape. The final throes of depression is like paying of your mortgage, getting nowhere in the beginning, and eventually you'll start to see minimal results, it'll speed up, and right at the end you pay it all off in double quick time, ie the bit where it shifts just as quick as it came... Somehow, get rid of anxiety and depression and expect to be able to live a life again.
# what does 'a good un' do now - watch Tv in bed or read, and dry his eyes out completely, or tune into 'The 2 Mikes' (graham & parry) without doubt the funniest duo since Laurel and Hardy, now on Talksport radio 10pm-1am..