Announcement

Collapse
No announcement yet.

I need a pep talk

Collapse
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    People are often made up of their experiences or lack of experiences. Itís 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.
    What I donít get it is why people question and do not even attempt to accept what others tell them. If empathy was more prevalent, world would for sure be a better place.

    Comment


    • #17
      Yeah, especially when itís someone we know well. It feels like they donít trust us and/or think they know better than we do, the last thing we need instead of getting support and empathy when we are struggling.

      Comment


      • #18
        I'll write more tomorrow... eyes are too sore to type more today. Thanks to all for the comments. <3
        Yet another post-Lasik (2005)...
        Anyone have a time machine so I can go back and undo this mess?

        Comment


        • #19
          Originally posted by hopeful_hiker View Post

          Dry environment can devastate even normal eyes. Scientists did a dissecating stress study with mice and they ended up developing Sjogrenís 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.
          omg, yes... I wince and feel like puking when I read the mice studies... they're essentially torturing the mice to try to find a treatment for humans... I wish they wouldn't do that, it's cruel. I know how bad my eyes feel, and do induce that - and worse than that - on any living creature is awful.

          Maybe it sounds crazy to care so much about mice.. but freaking hell, they FEEL things like we do...

          Originally posted by hopeful_hiker View Post
          You know what helps you. Thatís the key.
          Indeed.

          Originally posted by hopeful_hiker View Post
          Comfort should come first when suffering, in my opinion.
          So true!

          Originally posted by hopeful_hiker View Post
          Being almost normal gives room to breathe a regroup. I donít believe I will ever be able to leave for extended time periods in dry places, especially in Toronto (winters), and thatís 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.
          Yes, I'm trying to accept this and harden myself so I don't succumb to pressure to do things that will harm my eyes only to prove myself to others, no matter who they are (and by extension, harm my family since they suffer too when my eyes are crapping out on me.. my kids have to be basically with an almost absent mother... my husband has to be with an almost absent wife and take on such a big load himself because his partner isn't able to be there and help share it).

          This has been a big lesson... I'm learning it's not my responsibility to prove to anyone that what I say about my eyes is real... it's not my responsibility to make sure I don't hurt their feelings because they think my refusal to visit at certain times of year is selfishness when in reality it's because my eyes will be devastated by doing so. I'm in survival mode now...

          The only thing that matters is making my eyes well enough to tolerate enough time on the computer to build my business large enough to allow me (plus my husband and kids) to live in the tropics permanently since that's currently the only thing that can save me.. .it's the only thing that can lower inflammation in my eyes to a level that isn't causing more damage - my eyes were white and comfortable in the tropics, rather than constantly red/pink, aching, sore, burning etc. like they are when I'm trying to live a normal middle class working life in Canada. Even pink-ness is a sign of inflammation... the only time my eyes have ever been truly white is in the tropics. Anyhow, I also need money to cover living expenses for my kids to be in Canada for university. Attaining that is my singular focus right now.

          I am sad if some people close to me will think I'm being melodramatic or exaggerating my condition, but I am working hard to accept that and stop fighting to change them... I can't change them. They will either choose to change themselves, or not... I have no control over that.

          If by some stroke of luck I am able to live comfortably in Canada one day - with white eyes, not pink or red - that'll be a bonus... but since that's not my reality right now, I feel like the only thing I can do is plan for how things are now, which means I need to get back to the tropics at my earliest opportunity. It may take years to get there... so be it. But I have to try.

          Originally posted by hopeful_hiker View Post
          Humidity is a blessing. Our forest air helped me when ever single blink hurt every day everywhere except for the outdoors.
          No doubt - humidity feels sooooo good.

          Originally posted by hopeful_hiker View Post
          Oh, and I am glad you mentioned scraping eyelids... thatís my biggest issue. Glad I am not crazy for having it.
          Nope... you're definitely not crazy. When it ramps up in intensity, it's so bloody uncomfortable you can't think of anything else other than how to make it stop. I wish people could understand this.

          Originally posted by hopeful_hiker View Post
          Also, I agree with Rebecca about persons A and B.
          They're not bad people. They just can't see me for who I am... I feel like they don't know me on a deep level, only on a surface level. They know who they wish I were, they know how they wish I was, they know how they wished I looked... I think they want me to be that way so badly that they just can't see me as I actually am no matter how many times I try to tell them.

          I feel like the only logical thing to do going forward is to stop trying to prove anything to anybody, even them.

          Self-preservation must come first. It would be lunacy to continue to do otherwise.
          Last edited by SAAG; 06-Jan-2019, 13:20.
          Yet another post-Lasik (2005)...
          Anyone have a time machine so I can go back and undo this mess?

          Comment


          • #20
            Originally posted by Hokucat View Post
            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.
            Yes, I can completely relate to that. We become good actors... pretending to be okay so as not to make those around us uncomfortable, so as not to ruin a good time for others, so as not to face people's doubts about us.


            Originally posted by Hokucat View Post
            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,
            Yes, and the "use more eye drops" thing is frigging ridiculous - like we've been dealing with this so long and didn't think of such a simple solution? Do they think we're that stupid? Or do they think we're deliberately withholding effective treatments from ourselves to get attention? It pisses me off.

            Originally posted by Hokucat View Post
            ...commented how my poor husband was doing everything like taking care of the kids, cooking, driving them around, etc. etc. Iíd try to explain how debilitating my condition was where no treatments were working, but it didnít 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 Iíve 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 couldnít believe it because she saw the pain I was in.
            I'm so sorry you went through that - it's shocking how quick people are to think one would willingly choose to withdraw from normal activities in life and be homebound by choice. That's majorly f'd up... generally I try to be more diplomatic, but I'm losing patience with such people and their lack of empathy.

            Originally posted by Hokucat View Post
            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-lawís 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 didnít want to do anything.
            I believe many people suffer from a lack of imagination. If they haven't personaly experienced something, they do not have the mental capacity to imagine it. And without the ability to imagine what something might be like, they cannot feel empathy or compassion, only judgment.

            Originally posted by Hokucat View Post
            I hope things can get to a better place for you this coming year.
            Thank-you for that. I don't know what I'd do without this forum... it's cathartic to talk it out with people... it makes me feel better.

            Thanks again to all <3
            Yet another post-Lasik (2005)...
            Anyone have a time machine so I can go back and undo this mess?

            Comment


            • #21
              UPDATE re: "Dec 27 post... Every time I leave this room to go outside, my eyes get worse and it takes a few days for them to return to baseline. I ordered the 7-eye Sedona glasses to lessen the airflow reaching my eyes when outside... my hope is that this will allow me to get out more without suffering a setback with my eyes."

              The new glasses make a world of difference when I go out. OMG, it's incredible how much less irritation my eyes feel when outside because the new glasses seal tighter than the other ones I was wearing (I could get away with the other ones in humid tropical Mexico, but not here in Europe where the humidity is more moderate). I'm still avoiding going outside when the humidity drops too much, but on days when it's not so bad, I can go out now, even if it's windy. Huge sigh of relief. It's a step in the right direction.

              I'm also sleeping better since I started using that meditation app daily... it sounds crazy perhaps, because it's such a simple thing... and I'm generally not into meditation-type stuff AT ALL... however, the Headspace app suits me because it's free of woo-woo (https://www.headspace.com/), is helping me shut off all the worry/stress that's on my mind, and that means I'm sleeping better, and that is helping my eyes feel better. Another step in the right direction.

              I watched a movie today, pain free. I checked email today, pain-free. I'm still babying my eyes a lot and avoiding a lot of activities/screen time... but... the new glasses and improved sleep are making a big difference. Onwards and upwards...

              I'll try to continue to update this thread as things progress.
              Last edited by SAAG; 06-Jan-2019, 15:01.
              Yet another post-Lasik (2005)...
              Anyone have a time machine so I can go back and undo this mess?

              Comment


              • #22
                Thanks for the update SAAG. Great to hear the new glasses and meditation/sleep are helping you. Was worried about you! But sounds very promising that you can go outside, and watch a movie and check emails pain-free, as from personal experience I remember how painful and impossible those things were! Am hopeful you will continue to progress.

                Comment


                • #23
                  I'm lucky that I have such an amazing, supportive husband - honestly, I could not have chosen a better man. And not that he'd say it this way, but I kind of feel like his attitude about my eye problems and some people's lack of compassion/understanding about it is "F*** it... if they don't understand that your eyes are bad as they are, too bad for them. We know. And we have to do what we have to do to allow you to live a more comfortable, pain-free life. Let them think what they want." It's rubbing off on me... I really need to care less about it when other people assume I'm exaggerating because they can't wrap their heads around eyes causing such a massive problem.

                  Originally posted by Hokucat View Post
                  Am hopeful you will continue to progress.
                  Me too. I have to progress... there is no other good option right now. My kids need me, they're still so young... I want to be a normal wife (well, as normal as I can ever be with my eye issues... so let's say normal'ish is the goal?). And to be honest, although I ticked off a lot of bucket list items in these last few years of travel, and will tick off several more before I return to Canada in a few months, I still have a ton more bucket list items that I still want to do... so.

                  For all those reasons, fighting on is the only option.

                  But I'm glad I was able to vent here... I really needed to let it out. I don't know why it feels so good to TALK about it, to admit how you really feel to someone, but it just does... it feels good to widen the circle of people who understand, who believe you without question, rather than doubt you. And maybe talking about it feels good because it's exhausting to pretend you're doing better than you really are so you don't freak anyone out? I don't know.

                  I wish everyone out there who suffers from this and feels alone in it knew about this forum so they could talk it out with people here... Facebook groups are good, but forums offer the opportunity to choose an anonymous username and therefore speak more freely without worries about what people who know you might think if they saw what you wrote.

                  Some days I think "YES! I can do this! I'll get better again!" - other days I am more guarded and merely think "MAYBE I can get better again... maybe I can get fully functional again..." People like consistency... and I can't be consistent right now because my optimism waxes and wanes from day to day still.

                  The overall trend since I've been sleeping better (which I 100% credit the meditation app for helping me with) is to be more positive... nonetheless, there are still moments when I feel like this is so f'ing hard and don't know if I can do it. The good news is that nowadays those times tend to last only MINUTES (sometimes hours), rather than DAYS/WEEKS of feeling that way.

                  I reached out to someone on FB (saw her post in a group I'm in) who was having a hell of a hard time with severe dryness and discomfort... I could see so much of my own experience in hers, the timing of her current flare up, we're close in age, both have 2 kids, both married, both with good careers, both look like normal people in FB pics who haven't got a care in the world... anyhow, I wanted SO BADLY for her to know that the way she is feeling is NOT going to be permanent, to hang in there, to stick it out and wait for better times to come - because they WILL, you know? I probably made an idiot of myself writing my long, rambling messages lol Most people are more succinct than I am. Anyhow, I really hope she makes it through what she's going through and doesn't give up... everyone here knows how hard it can be.

                  As for me, the logical side of me thinks there's a decent chance of getting my eyes back to all-day fully functional IF I can stay in a highly humid, very warm room for most of my waking hours. I realize that sounds nuts and hermit-like, but it is what it is. I figure I'll try that for a few years to see if I can build my biz big enough to get back to a tropical climate permanently... if I succeed, my life will be freaking amazing since I'll be able to do so many NORMAL things, including reading books (rather than audiobooks). If I fail, the logical side of me knows it's not the end of the world, it'll just mean I'll have to take up more eye-friendly hobbies like, I dunno... gardening maybe? Volunteering at the local humane society? Fostering cats/dogs waiting for adoption? I'm trying to figure out what I will DO to occupy myself and be happy if I have to stay in Canada permanently where the climate makes my eyes so much more sensitive. I need a plan for that, just in case.

                  Having a taste of relative normalcy for those years in the tropics is hard to give up. It's ironic that the ONE THING that can get me back to a tropical climate on a more permanent basis - working online - is also one of the MOST DIFFICULT THINGS for someone with severe dry eye to do. I can work online effortlessly in super warm, super high humidity - my life was fricking amazing in the tropics because I was SOOOOO much more normal in terms of my ability to do things pain-free... but in a normal climate I have to be so restricted. Sigh.

                  I'm also trying to do blinking exercises as many times a day as I can remember... I saw a video of Dr. Korb (I think it was him?... my memory may be faulty though) speaking to a room full of docs about dry eyes, and he demonstrated his recommended blinking exercises (I wish I had a link to it, I'd share it if I did). Anyways, it's not like this is going to be a miracle cure... but every tiny bit of improvement adds up, and together, they can add up to a lot of improvement over time.
                  Yet another post-Lasik (2005)...
                  Anyone have a time machine so I can go back and undo this mess?

                  Comment


                  • #24
                    And, in case this is of use to anyone reading this... I just added this app (Time Out by Dejal Systems, LLC) to my MacBook: https://itunes.apple.com/us/app/time...02592703?mt=12

                    I can use it to remind myself to take blink breaks when I'm using the computer This wasn't necessary in the topics as my eyes did fine there... but here, I need it. I'm still fiddling around to try to find the perfect settings for my situation.
                    Yet another post-Lasik (2005)...
                    Anyone have a time machine so I can go back and undo this mess?

                    Comment


                    • #25
                      So, so glad that the glasses are helping. Just a little incremental difference in one thing, sometimes, is all it takes to turn one particular corner.

                      In fact I think sometimes (not thinking about you specifically, just pondering this in general) I think that the problem can loom so large to us at times that it doesn't even occur to us that tweaking details might be enough for today's need.

                      I downloaded Headspace, kind of having fun with it! Thanks for the tip!

                      I love this quote: "I wish everyone out there who suffers from this and feels alone in it knew about this forum so they could talk it out with people here... Facebook groups are good, but forums offer the opportunity to choose an anonymous username and therefore speak more freely without worries about what people who know you might think if they saw what you wrote." Do you mind if I quote you on this SAAG ?

                      Not everybody likes to write copiously like us and the FB groups are good for instant gratification and instant "contextualization" of a question. But... for anonymity and any actual discussion or really getting into any issue or description, forums really are so much better.
                      Rebecca Petris
                      The Dry Eye Zone

                      Comment


                      • #26
                        Originally posted by Rebecca Petris View Post
                        In fact I think sometimes (not thinking about you specifically, just pondering this in general) I think that the problem can loom so large to us at times that it doesn't even occur to us that tweaking details might be enough for today's need.
                        Definitely. And the other thing is that when you start feeling better - as I did for YEARS - you may be able to stop using a lot of the precautions you used to use to make your eyes feel better. And it's easy to forget all the tiny things you used to do to make your eyes tolerable back when they weren't doing so well. I was reading through my own old forum posts and was reminded of a lot of little things I used to have to do, and am trying to add as many of them as I can back into my routine. Super-tight fitting glasses being one of them. Also, the app reminding me to blink when I'm on the computer.

                        It's so frustrating to go backwards, but I'm trying to just accept the way things are for now while simultaneously working towards improving things long-term.

                        Originally posted by Rebecca Petris View Post
                        I downloaded Headspace, kind of having fun with it! Thanks for the tip!
                        Oh cool! I've tried lots of apps, but either didn't like the voice of the person guiding the meditation, or it had too much woo-woo that made me impatient... so this one suits me really well. I hope you find it as helpful as I do.

                        Originally posted by Rebecca Petris View Post
                        I love this quote: "I wish everyone out there who suffers from this and feels alone in it knew about this forum so they could talk it out with people here... Facebook groups are good, but forums offer the opportunity to choose an anonymous username and therefore speak more freely without worries about what people who know you might think if they saw what you wrote." Do you mind if I quote you on this SAAG ?
                        I don't mind at all. Can you mark it as said by a forum user though, not specifically by SAAG? I prefer to just blend in among all the users here :-) If people really want to know who said it, they can search the forum.

                        Originally posted by Rebecca Petris View Post
                        But... for anonymity and any actual discussion or really getting into any issue or description, forums really are so much better.
                        Exactly. I totally agree!

                        Yet another post-Lasik (2005)...
                        Anyone have a time machine so I can go back and undo this mess?

                        Comment


                        • #27
                          Posted, then thought better of it and deleted it all. Sorry!
                          Last edited by SAAG; 06-Feb-2019, 12:11.
                          Yet another post-Lasik (2005)...
                          Anyone have a time machine so I can go back and undo this mess?

                          Comment

                          Previously entered content was automatically saved. Restore or Discard.
                          Auto-Saved
                          Smile :) Biggrin :D Wink ;) Rolleyes :rolleyes: Tongue :p Cool :cool: Redface :o Confused :confused: Eek :eek: Frown :( Mad :mad:
                          x
                          Insert: Thumbnail Small Medium Large Fullsize Remove  
                          x
                          Working...
                          X