I need a pep talk

[Guest]

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[Milo007]

It's heart wrenching to read your post SAAG

Today was a bad day for me too. In fact I felt like crying. Couldn't sleep the last night due to panic attacks. I can totally understand how it feels to go back to where you started after some really hard work to make your eyes feel better. It's relentless and so much unpredictable. I don't know if I can continue like this for the rest of my life. I can definitely understand your pain. Just hold on for the better times.

Hope is the only thing we can live for.

Please feel free to privately talk to me if you need someone to listen and share your agony.

Feeling dejected after reading your post.

[Rebecca Petris]

This is just so far beyond heartbreaking SAAG. I am so, so, sorry.

What just really kills me is for you to be here: "To be completely honest, I'm devastated by how my eyes are right now, and feeling so alone....The freedom from eye pain that I fought so hard for is gone. I'm back to where I was before we left for the tropics...."

AND at the same time, to be enduring not one, but more than one person in your life, who could either read or listen to any of your experience, ANY of it, ANY OF IT AT ALL, let alone so much of it and over a long period of time, and yet respond with such utter, incredulous callous indifference. This leaves me dumbfounded and furious. I know you specifically don't want anyone bashing people you care about so forgive me but... I... just... can't help... but feel... so indignant at the toxic harm caused by people who choose to respond in such an inhumane way to such obvious suffering.

People will always doubt my integrity, wondering if I'm making this up, exaggerating, or whatever. It's so insulting. But people just can't wrap their heads around it.

NO. They shouldn't. They shouldn't. That's intolerable. Unjustifiable.

Sigh. I'm sorry. Not exactly a pep talk.

I know that you clawed your way back from the worst before, and I know you will do so again. I know you'll be ok. I know from watching from a distance over the years that you're incredibly strong and I know how much you've reached out and helped others and I know how many, many, many times I've referred to your stories and experiences when I've talked with others on the phone and how many people have taken hope from your progresses and triumphs and your persistence. You are such an amazing person. And I'm really, really glad that you give yourself permission to acknowledge how you feel and to put it into words because you carry such a large load.

I just hate that you are going through this and I wish there was something, anything I could do to make it !@#$!@#$!@#$!#$!#$ pass.

[farmgirl]

OMG Saag, I am so, so sorry to hear that you are having such a struggle. It must have been hard for you to even write this epistle.

I guess I have to question if it is really that important to have person A and B in your life, I guess you have to ask yourself, am I better off with them or without them, rather like contemplating a divorce. Do they contribute more to your life and happiness than they take or are they sucking more out of you than you can give.

I know it is not easy to cut anyone out of your life and perhaps you don't need to go that far if they are people really close to you but rather just keep them on the periphery at arms length; to be there if they seek you out but not initiating contact of your own.

Life is complicated enough trying to raise a family but we plug on the best we can. If you had cancer and were laying in bed no one would question your motives, I understand your frustration in that you look so normal that it is difficult for people to understand just how you feel. I like to use the analogy of soap in your eyes, that is something that everyone can relate to. I just explain that it is like having soap in your eyes, that they burn and sting but the only difference is that that feeling rarely goes away unless you are in optimum conditions, like a room with a humidifier or in the tropics so those are the environments that you seek.

I applaud you for having taken the steps you did for as long as you did to move around the world seeking places that might allow you to live in relative comfort. You know now what it will take to live that life and maybe in the future you can make it permanent.

I know that a lot has changed since you have been gone and maybe some of the new treatments will help you....stay strong.

There is one thing that I might try if I were as desperate for humidity as you are. Is there any way that you can raise the humidity inside your moisture chambers. For example my 7eye brisas have quite a large eye lens and there is room to tuck a moistened strip (I just tried it with toilet paper) in the bottom of the lens resting on top of the gasket. I would of course try to create something black so it is not so noticeable to my eye but maybe that would allow you sufficient comfort to go to your childrens activities. You could bring along an eyedropper in your purse to re-moisten it as it dries out. Just a thought.

Anyhow my friend, feel free to PM or call me anytime you need a shoulder to cry/***** on....(smiley face)....cheers...F/G

[Guest]

I'll shake it off eventually... don't know how yet... but somehow, I will. You will too.

[Guest]

One thing I can say for sure is that it's not indifference ... I think they're worn out, very wrapped up in other stuff, and have zero mental space to deal with what's going on in my life. So they ignore it, pretend it's not happening, or stay in a state of denial. Sadly, this knowledge doesn't make it any easier for me to deal with their reactions to what I go through. Sigh.

Anyhow, I appreciate your words of support... they give me comfort, and reassure me I'm not overreacting or being "too sensitive" or "overly emotional" to the way they've handled this. I've always thought ANYONE would be upset about this kind of reaction... but it's affirming to hear it from someone else.

[Guest]

Anyhow my friend, feel free to PM or call me anytime you need a shoulder to cry/***** on....(smiley face)....cheers...F/G

Thanks F/G... it means a lot. <3

[Milo007]

I can relate to the trouble sleeping... I know that's part of my eye trouble. I fall asleep okay, but wake up in the middle of the night, my chest gets tight, tears well up, and I can't fall asleep again easily. I either stay up the rest of the night, or after a few hours awake, fall asleep again for a few more hours. Frigging exhausting and not so great for the eyes.

So much truth in your words. I guess life has been a living hell for all of us. Only some are lucky to get away. Hopefully we will one day. I pray that everyone will.

I will get through this... always do. But I'm feeling stuck in a very black mood that I am having great difficulty shaking... I'll shake it off eventually... don't know how yet... but somehow, I will. You will too.

Yes we will get through this for certain. Time is a great healer. But the question is for how long before destiny strikes the next blow and again things would repeat. This is relentless torment.

Sorry I was freaked out by your post. I realize you are one of the oldest members of this forum and seeing you write your heart out like this really scared me. I am just a newbie trying to adapt to the miseries of life this disease has brought upon me whereas you have been living with it for much longer. I got frightened to see you break out like this.

[Guest]

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[Guest]

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[Milo007]

In case this is any consolation (and it probably will be), my LASIK surgeon had me on preserved artificial tears for 4 years. I was using them every 5 minutes in the beginning (192 times a day with my surgeon's blessing), and later my eyes improved to only needing them every 15 minutes... and later to using them once an hour. But I couldn't very well call in sick to avoid having to use so many eye drops since my surgeon told me to keep on doing it, that those were the best drops to use, and that my eyes were doing "GREAT!" - I figured if my doctor wouldn't back me up in needing to stay off work to let my eyes calm down, I'd have to suck it up, and heck, maybe he was right and this was within the realm of a normal recovery. Every time I checked with him and emphasized how many times a day I needed drops to function (and I checked often to make sure it was okay), he'd say these were the best drops to use and to keep on doing what I was doing because I was doing "great!". @$%@$%@$% Clearly, in hindsight, he's an a$$.

It's disgusting to learn about your doctor. Unfortunately even today most opthalmic preparations come with preservatives and that too mostly with the deadly BAK as the preservative. I think I used drops with preservatives as frequently as 2-3 times an hour for a couple of months but before that I used a drop which was preservative free for around 3 years. Interestingly my condition deteriorated super dramatically after I used the drop with preservative (BAK) for 2 months. Before that my condition was not that severe I guess. Now I feel BAK had a greater role to play as a trigger than I anticipated.

However, all those preservatives on my eyes for 4 years may have caused permanent damage for all I know... 4 years of chronic inflammation that was pretty much untreated because my LASIK surgeon insisted I was doing "GREAT!" the whole time also likely did some permanent damage.

What does your meibography and lipiscan results indicate?

I believe if there's damage to the meibomian glands by the preservatives a meibography would show some truncated or entirely lost glands. Lipiscan also identifies scar tissue if present.

I am very curious to know about your lipiview results since I pretty much have similar problem as yours. I can't withstand dry conditions for long and that is definitely attributable to low LLT in both my eyes. I also blink partially 6/6 times (left eye) and 4/6 times (right eye). I guess your lipiview results also indicate a low LLT as mine.

Also do you see lipids coming out of your meibomian gland orifices if mild pressure is applied to the outer surface of your eyelids?

If yes are they of significant volume (enough to cover up 2-3 times the diameter of the orifices)?

I think you could check for yourself using a 15x mirror if majority of your glands are secreting lipids in decent volumes. This is a good way to conclude if your glands are damaged or blocked for any reason.

So, on the bright side, assuming that didn't happen to you, assuming you didn't bathe your eyes in preservatives up to 192 times a day for months so you could keep working, then 64 times a day for many, many months once things "improved", then a mere 8-16 times a day for a long while, I bet you have good odds of recovering better than I have. I'd be optimistic if I were you... because my situation is especially freakish and most people don't end up like me.

Thank you for making me feel good and optimistic. I am going to run a recourse of topical azithromycin coupled with oral doxycycline for a month in an attempt to unblock some of my glands which are not yielding good volume of lipids upon manual expression (earlier they used to pour out significantly greater volumes of lipids until I screwed up things with super hot compresses). Let's see if it works. But one thing is for sure even if my condition is cured up 100% by some miracle this episode of my life is going to haunt me for a very long time if not forever. Forgetful times to be brutally honest.

[Guest]

I started using meditation again to calm my mind. It's been really good at helping me calm my mind so I can sleep in the past... maybe it will be again.

[Guest]

What I shared here is a bit raw, so I'm going back and deleting some of it.

[hopeful_hiker]

SAAG, I am sorry that people do not understand or even doubt your symptoms. Even my partner sometimes does not get how I feel partially because I hide it. And other people... I don’t think they try or are capable of getting it unless they had chronic pain issues themselves or are super empathetic.

I completely understand your issues with humidity. A few months ago I went to visit family on the island and my eyes were doing pretty decently at the time. I stayed for about 5 days there with a humidifier running but it could barely reach 50-55%. Outside was cold and not humid. One time I left for a walk and returned later to find that the humidifier was turned off when I was gone! The host was worried it won’t auto shut off when the water runs out or something. I came back to 40% humidity. I thought I would be back to nice humid air...

When I got back home my symptoms did not improve for a while. However, I am easily able to increase humidity to 60% in a small apartment. Sometimes, the humidity is at 60% by itself. Rarely it goes below 45%.

When I feel bad, I make sure to go outside. Negative temperatures with high humidity don’t help. However, usually it’s 5 degrees here in the winter and 85%+ humidity. It feels good. I believe it heals my eyes, and your experience makes sense, too.

Dry environment can devastate even normal eyes. Scientists did a dissecating stress study with mice and they ended up developing Sjogren’s like pathology that lingered for weeks and months after (I hate experiments on animals by the way). So I imagine when our tear film is compromised, even the slightly dry places cause desiccating stress and jumpstarting symptoms.

You know what helps you. That’s the key. You can use this knowledge when you are able to do that (e.g. moving back or a different state or province or doing what farmgirl does—moving away to Florida or such for the winter). It does not matter if you are far from extended family, or not in the top country of your choice. Comfort should come first when suffering, in my opinion. Being almost normal gives room to breathe a regroup. I don’t believe I will ever be able to leave for extended time periods in dry places, especially in Toronto (winters), and that’s fine. People who love me, come and visit me. And when I am a bit better, I will pick the most humid time and visit them.

Humidity is a blessing. Our forest air helped me when ever single blink hurt every day everywhere except for the outdoors.

P.S.

Oh, and I am glad you mentioned scraping eyelids... that’s my biggest issue. Glad I am not crazy for having it.

Also, I agree with Rebecca about persons A and B.

[Hokucat]

SAAG, I remember pulling everything I could get together for just a few seconds, so I could smile with my eyes forced opened and not look in pain for family pictures. Looking back at those pictures, I still didn’t do a good job hiding it.

I had many acquaintances, friends and a few family members who constantly told me I needed to get out more, told me to drink more water and use more eye drops, commented how my poor husband was doing everything like taking care of the kids, cooking, driving them around, etc. etc. I’d try to explain how debilitating my condition was where no treatments were working, but it didn’t seem to get through to them no matter how many times or how I explained it to them, some had a glazed look when I was half-way through explaining, I could tell my efforts were futile.

When my mother-in-law, who in general is a nice person, told me earlier this year (now that I’ve been able to manage decently for ~3 years) that she thought I had been making up how painful my eyes were where I was literally homebound for three years, depressed, had to stop working, could not attend most family gatherings or help my husband, I got very angry and couldn’t believe it because she saw the pain I was in. I asked her why she thought I was pretending. She said she never heard of dry eyes being so bad. She also said she has always been in good health, so had no idea what it was like to be incapacitated, especially at my age. So it really hit home for me after talking with her and thinking about it, why so many people did not understand...they never have seen anyone with such a debilitating degree of dry eye, they nor a close loved one ever experienced anything incapacitating, if one is fairly young it seems unusual to have anything so severe, etc. In my mother-in-law’s case, perhaps seeing her son have to do so much more and her grandchildren not have enough attention from their mom for several years was also a factor, where it looked like I didn’t want to do anything.

People are often made up of their experiences or lack of experiences. It’s not an excuse for all of them, because some people will never change, but I will have to say after going through Dry Eye hell and coming out the other end, I personally have so much more empathy than before for anyone who is suffering from painful andor depressing physical, mental, or social situations.

I hope things can get to a better place for you this coming year.