Frustrated

[MyDryEyes]

Hi All,

It seems like I am always posting on DEZ when things aren’t going so well. I look forward to the day when I can post under the “Triumphs” section and really mean it!! At least I know I have a place to go when I am feeling down. I thank all of you for that!!

Over the past couple of months, it really did seem like things were improving for me. I still had pain, no doubt, but I was managing and doing more and more stuff. Well, as soon as I verbalized my feelings of improvements to my husband – WHAM!! The very next day I woke up to that old, horrible pain reminiscent of what I felt last summer. It is the bad debilitating pain. Recently, my “bad eye days” would last for a day or two and then improve a bit. This one has been hanging on for a week and I can’t figure out why.

I haven’t seen my OD in a couple of months, so I guess it is time to go and see him again. I am starting to feel like there isn’t much more that they can do for me.

And, most horrifying, is how difficult this is for my husband. I was having a major meltdown last night and he didn’t handle it very well. He said that he is tired too and has to deal with everything around the house and a wife that is practically disabled and in pain. He said that he can’t help me or make me happy. I don’t know what to do for him. I am wondering how others of you help your spouses cope with this situation?

Here is my other concern: I am now about 18 months out from my surgery. Do I stop hoping for natural improvements and move forward with the idea that the only way I will manage this is through more and more and more treatments? And I am not sure what to try and do next.

The setbacks are so hard!! It sort of throws me back into emotional turmoil.

It is probably just two steps forward and one back, but I sure am bummed out. I am so tired of this and I want my life back!!!!!

[clioos]

Frustrated Two

Hi,

Just to let you know, I'm having the same difficulty. My husband is most of the time very supportive. But if I go on too long about the pain, he gets tired of it and goes for a 4-5 mile hike, (That's what he loves to do) and then he comes back refreshed (So far).

I haven't fully learned to handle the pain on my own but I think that is the key. Even if just a little bit. It's tough when our discomfort makes us feel insufficient. Also, I know in my case, it has affected my self-esteem. I just try to keep as busy as I can. We recently purchased a little dog (Maltese) and that has help with my feeling of being along with this painful disorder. I love my husband, but sometimes I think I want him to feel what I'm feeling so I don't feel so isolated. Weird!!!

Keep us posted to how it's going and best wishes.

Clio

[pjcortes]

Frustrated three!

I so know what you are talking about. My husband, who I also love very much, wants to know why I am so bitter and seem miserable most of the time. Well, because I am This condition for lack of a better term sucks! I also wish he could feel what I feel just for one day, so then maybe he could understand the magnitude of this disorder.

I started going to yoga because I thought it would help relax me and it does. The problem with that is if I go regularly, the house stays a mess and then I stress out about having a messy house. My husband is obsessed with exercise and he just leaves the messy house and goes running or to gym. No care in the world. Sorry I am just venting.

Anyway, I do know how you feel.

Take care!

Jennie

[mlittlem]

Pain and Depression

I can certainly relate to the emotional pain that accompanies the physical pain. Not to sound even more bitter, but I would say be grateful you do have a husband for support, even though it gets strained at times. I am divorced and alone, so I don't even have that support at home. The loneliness is incredible.

May I ask a question regarding the pain. I see it mentioned on numerous occasions, but no one describes the pain specifically. The reason is that my pain is more in the surrounding skin area and less in the eyes themselves. Is this unusual, or is this the pain which people refer to so often?

Thanks and sorry to sound rather down today.

[sazy123]

your not alone mydryeyes, i know ill never be posting in the 'my triumphs' section, and ive tried probably more than anyone on this site! im on the verge of breakdown again, i cant cope with it anymore.

[jlg_uk]

As I've eluded to in a recent post, it can be hard to cope in the face of unending suffering, misery and quality of life that is a shadow of what we knew.

That said, one also has to try to take things one day at a time, and try as best as one can to continue to fight the good fight. Without the prospect of hope, that's a very difficult task - but I think even for those of us who have tried many things without success, given the increasing focus historically hard to treat DES conditions are now getting (due to increased prevalence) from pharmaceutical companies and medical Doctors, I prefer to think the hope is very real, albeit not manifest next week.

[irish eyes]

Hi Sazy

I know - this is all so horrible. It saps the mental stamina and none of us perform to our best.

To paraphrase Jlg
I prefer to think the hope is very real, albeit not manifest next week.

You take care now.

[odydnas]

Hi everyone,
The psychological aspect of DES seems to be just as bad as dry eyes itself. Sometimes I wonder that if, correction, WHEN my eyes feel comfortable again, if I will still be sorting through the psychological havok that DES has caused. It is difficult to have this "invisible disability" and not have a strong support network around you and people who understand. The isolation can be excruciating. I'm not sure where I am getting at...except that we need to keep trying...exhaust every possible reason and treatment...and just take it one day at a time....and to let you all know that you are not alone in the frustation (I hope this part helps a little).