Dealing with the “Mental” aspect of this disease

[Edan]

I have had dry eyes / cornea erosion's for over 15 years. My problems started after eyelid surgery.

Every doctor that I have seen in the last two years, 2 cornea specialist, and 2 optometrist have, to some degree, mentioned the “mental” side of this disease. This has ranged from “You need to monitor yourself for your overall health” to “Being too anxious could be making your problems worse”.

Having worked in the medical field most of my life, and seeing for myself what a persons mental attitude can do, basically agree that a negative attitude can make most situations worse. But I have also heard that upon running out of ideas, the doctors would state that the problem “Is all in their head”.

I am happy with my current doctors and I am not trying to put anybody down here, I am just wondering how everyone deals with the mental aspect of this problem. Just today, I could tell that my doctor was saying this to help me.

I started dealing with this when I realized that I was “afraid” to go to bed at night due to the erosion's. I guess it took a few years of researching the problem, talking to others with this issue, and finally, just “kicking myself” whenever I had a negative thought. The only times that I “worry” about this is when I wake up with an erosion. In that unguarded state, I wake up with pain and thoughts of how long until I get an erosion that will impair my vision. Other than this, I can generally put the worry aside, but it can be a struggle at times.

Again, I would be curious as to how you deal with the anxiety that happens with this disease, but also, how do you monitor your mental health to know if you are worrying too much.


Thank you.

[Klee]

Id like to know to,i cant help but obsess about my vision. Its hard.

[Patrolman]

Sorry for your situation. I have had corneal erosion in the past but nothing like the extent and frequency to which you describe. Following PRK surgery, My issues are mild discomfort 24/7 and haze when in particularly dry environments. Mindfulness meditation helps me with the mental side of things. When I practice gratitude regularly I don't feel jealous/resentful of pretty much everyone around who takes having their comfortable eyes for granted etc. I also keep a bottle of contact solution in the fridge and lay back with an eyebath if I need some instant (temporary) relief.

[khmedia]

Very good topic Edan. A lot of the time we can discuss the physical aspects of our condition but overlook this shadowy aspect which seems to run parallel. The reason I am replying to this thread is a direct result of the 'mental' aspect of my dry eye. Sometimes when it gets bad I have to visit the forum for help. Readings things and sometimes replying to topics helps me. For the past 2 years I've being trying to get 'used' to my new life. Only this morning on the way to work I was thinking of such things. I always seem to think that I am gazing back at the healthy happier me who had no worries at all. The chronic nature of this condition makes me soo jealous of where I was - and also envious of those who don't have to carry this condition. Sure there are waayyy much scenarios than this with so much sickness in this world. However this condition is terrible in its own unique way. For me it is the feeling trapped that causes my mental stress/worry. I do find that is comes and goes in waves. As I write this it is really increasing. However I know when I go to get some lunch and get distracted I will feel more at ease. I think there is a lesson in that when I visit the forum and read up on things, as Rebecca would agree, it can have a negative effect. Whereas getting on with life, talking, meeting people, eating food can be a positive thing.

[Klee]

I find at home with no distractions the symptoms amplify,if i can go to somewhere with distractions,i have so much to take in,the symptoms arent as pronounced. I need brain overload to wipe out the anxiety from it.

[Kimmycarolina]

Unfortunately, I haven't mastered it yet, but I can empathize with you. I think it's natural to worry, and it's not always a negative thing. Worry is what drives you to continue searching for a cure. I used to have erosions, but they got better. Why? I don't know. Maybe because of Restasis? I have Sjogren's and I am still suffering with dry and irritated eyes that I have to wake up for to put drops in and, of course, I am still looking for a cure because of that, but I totally empathize with you about your fear. I also suffer from another condition and sometimes I can't sleep at night because of my anxiety about it. So I know what you are talking about. This other condition went misdiagnosed by doctors for years. Many doctors who were very good would rather tell me that it was mental rather than physical because they couldn't find the proof for themselves. But I persevered, and I got an answer. Now, I just need to be brave enough to go through the treatment.

I guess you can tell yourself: "I will deal with this erosion if it happens, but until then, I won't worry." Not easy to do, but maybe that's the only way to sleep? But then I would keep coming to the site looking for answers! You might just find an answer here.

[Kimmycarolina]

Btw: What have the doctors recommended for treating your erosions?

[Edan]

Both cornea specialist that I see recommend that I have a “superficial keratecotomy with diamond burr”.

I am a little hesitant right now as I only get an erosion during the winter months, or when the air is cold and dry.

My “theory’ is that if I could get the dry eye under control a little bit, that I would not need the surgery. My erosion's are very predictable as to the level of dryness that I have.

My eyes are very sensitive to any thing I put into them, hence my hesitation on the surgery. Some of the drops I would have to use post op are on my list of meds that cause me problems. I have been told “we will cross that bridge when we get to it” concerning the drops, but this statement only increases my reluctance.

[Kimmycarolina]

I can totally understand your anxiety. In addition to my dry eye condition, I am suffering from iron deficiency anemia and I was offered IV iron infusions last fall and then again more recently. But I have done the research and I know that there are a percentage of people who get these infusions and then develop some serious and sometimes persistent side effects. I can't bring myself to go forward, but I don't really want to stay like I am. Also, my treating physician isn't familiar with these side effects which simply shocks me. And like you, I don't want to cross that bridge when we get to it. I want to know the plan ahead of time.

I got several erosions in the beginning of this journey, only on my right side. Always in the morning, after a dry night. The only thing that has changed has been my use of Restasis, which I was very reluctant to use given the pain it caused me. But for some reason, after several weeks of being on it, my eyes didn't burn as much and now they don't burn at all. I keep it in the fridge and the coldness feels good. But my DX is different from yours. I have Sjogren's. I have also used Muro 128 which was probably the worst pain I have ever felt in my eyes, searing pain, but it drew a lot of water out from behind my cornea and maybe that helped seal the cornea together?? I don't know. It's not something to use lightly. I though I was going to go blind, but I didn't. I understand your reluctance to undergo surgery and take on more risk. I hope you can figure out a way to go forward that is sustainable for you.

[Kimmycarolina]

Okay, I just did like five minutes of research and it sounds like hypertonic solutions like Muro 128 have been used with RCE successfully and so my theory about Restasis may not be correct. It pulls the fluid out from behind the cornea. But it really hurts.