Acceptance

[JAH1973]

I have only endured dry eye since May of 2008 and have come to realize that I will be approaching my first full year of this horrible discomfort. I recently read a statement noted by Rebecca that she did not really think about her eyes unless someone asks. (Please correct me if this is an incorrect statement) To me, that is absolutely amazing and I hope to be in that position someday. I have also read many follow-ups by members here who have either been cured or have gone on to feeling well. This is also very inspiring.

My best regards also goes out to Rebecca regarding this website. Although I do not know the entire story, I find it quite impressive for someone to make the most out of a horrible situation. This website and support within has made a great impact in my life. So, to all of you, I greatly thank each person who has been there to answer questions so freely. It is reassuring to know that someone is out there to help even when nobody knows whether or not the person typing is also crying and/or miserable from severe pain!

My question goes out to those who have dealt with dry eye for a much longer period of time and have gone through the miserable ups and downs of physical and emotional pain.

How long did it take for you to accept that this was something that was not going away and that your life may never be as it was?

When you finally accepted the disease, were you in a more comfortable state?

What change did you have to make in your life that impacted you the most?

Which treatment(s) helped the most?

What do you love the most about this website? Do you find that by simply logging on that you get a sense of comfort/relief?

Thank you in advance for any advice and postings.

Julie

[kitty]

I'm not sure what you consider to be a "much longer period of time". I just had my 3 year anniversary of my DES diagnosis, though in retrospect I was having serious symptoms a year or so before, and milder symptoms long before that. DES was my first chronic disease diagnosis, and it hit me hard emotionally. I was all consumed by it at first.

How long did it take for you to accept that this was something that was not going away and that your life may never be as it was?

I would say at about a year or so after the diagnosis.

When you finally accepted the disease, were you in a more comfortable state?

That's hard to say. I was emotionally more comfortable in that I had learned a lot about it and was doing everything I could to manage it. My eyes have never been "comfortable", but there are times that they are more comfortable than others.

What change did you have to make in your life that impacted you the most?

Giving up contact lenses was really hard for me. At first I limited myself from going anywhere there was a draft. Later I learned that I can manage this disease or it can manage me. Now I do what I want (other than wearing contacts), knowing I will probably pay the price in pain. But I'm still living my life and doing what I love.

Which treatment(s) helped the most?

The combination of PF TheraTears and punctal plugs have improved my symptoms about 40% - 50%. That's as good as it gets. Steroid drops help tremendously but I don't get to use them very often.

What do you love the most about this website? Do you find that by simply logging on that you get a sense of comfort/relief?

I love that it is here and it is full of people who share the same disorder as I do and fully understand what it is like to live with it day to day. As a "silent disability", joe blow public can't possibly understand. I so appreciate all of the knowledgeable people here, and know that when I ask a question, 9 times out of 10 someone will have an answer and if not, will give me the support I need. I could not have gotten through my first year following my diagnosis without this website.

[hkgcomet]

>>>How long did it take for you to accept that this was something that was not going away and that your life may never be as it was?

I never accept this illness, it won't be with me for my future life. I will fight it will full force and $$$ (please don't take all my $$$)

>>>When you finally accepted the disease, were you in a more comfortable state?

Haven't accept it, don't give up~ I had no permanent damage on the eye.

>>>What change did you have to make in your life that impacted you the most?

It made me give up working and rest at home for a long period.

>>>Which treatment(s) helped the most?

All things done just help a little, you had all added up together to get a better state. Just like having GEL at bedtime helps a lot. Moisture glasses helps outside home. Permanent plug don't do the expected, so regret.
Having chinese medicine, acupuncture, they helps.

>>>What do you love the most about this website? Do you find that by simply logging on that you get a sense of comfort/relief?

I love DRYEYEZONE~~~

[Justpeachythx]

On acceptance

Personally, I don't believe that "accepting" something means that you've given up. I've been suffering with DES for a little over two years; with varying degrees of intensity. September to December last year was horrific -- there were times that the helplessness and hopelessness was so overwhelming that I really might have given up (in the worst possible way) if I hadn't committed several months previously to a family vacation in late December. While away, things improved to the point I barely thought about my eyes, and while I knew this was probably "stolen time", I used it as an opportunity to clear my head and think very deeply about what I was going to do/how I was going to cope with this for the rest of my life.

Acceptance came to me in the form of giving myself permission to have bad days and stop fighting them. If it meant drops every five minutes, so be it. If it meant laying on the couch listening to TV for the entire evening, so be it.

Someone on this site once said that sometimes the best thing you can do for yourself is stop chasing a cure. I remember thinking well, what the heck else are you supposed to DOO??? But I think I got it now. The trick for me has been in finding the things I can do something about (my daily routine, keeping myself educated, taking ownership of my own wellbeing) and letting the obsessive, negative thinking go.

I remember having an epiphany several weeks ago, when I decided to push myself just a little. I'd agreed to go out to an event and was wondering how I could possibly get through it. A little voice spoke up and said "well, you can put your eye drops in every 5 minutes there, just as easy as you can do it here on the couch". It was sort of a sarcastic little voice, challenging myself for considering such a thing. But I decided to do it anyway ... telling myself I could always leave if it became unbearable. I got through that evening with only one drop, and it sort of became a turning point for me.

I'm a firm believer that we create what we "think". And I think what I did was draw a line in the sand and acknowledge to myself that I was stepping over it. You have a choice to either stay on this side of that line in the sand, resentful, angry, panic-filled, and mourning the things you've lost ... or step across to the other side and move on ... dry eye and all.

Acceptance to me doesn't mean giving up ... it means not expending useless negative energy worrying about things that I really can't do anything about. And sometimes with this disease, the only thing you can control is the degree to which you refuse to let it change who you are. I've given myself permission to have bad days and try to stop compulsively worrying about what those bad days/weeks/months might mean to the rest of my life.

I've been doing much better since Christmas and really do think a lot of it had to do with "surrendering" to those bad days and trying very hard to stay in the moment.

Hope everyone is having a great weekend.

Debbi

[Margje]

Acceptance?

It is very hard. The fact that I have to wear my glasses, the fact that nobody around me seems to understand, the fact that when I have a good day my mind fools me into thinking I am cured, the fact that I am less self assured and feel very vulnerable, the fact that working is hell but on the onther hand keeps me occupied. All the things I have to do to make it bearable.

It started in november 2007 and I am no way near acceptance. It is a journey. A very lonesome journey. A journey nobody around me seems to understand and makes me afraid of the future but...this website gives me comfort. Comfort that there are people around the world that feel and experience the same of all ages. I keep on adjusting my routine to perfection it. I now know that excercise, going out (even though the eyes hurt), read instead of watching television, go on holiday to warm humid countries and indeed accepting bad days is my way of dealing with it. Although the anger sometimes still consumes me. Especially when a visit a doctor who tells me that I am the only one suffering from this at such a young age and there is nothing more they can do for me...

Sorry not a very good day today but I know that after a bad day there always is a good day. Thank god for tomorrow....

Margje

[mclaire66]

i feel the same way margje, just know that people here do understand if no one else around you does--i hope today is a good day for you...