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How DE affects daily life - good and bad

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  • How DE affects daily life - good and bad

    Apart from the drops, compresses, discomfort etc of having dry eye and bleph, there are ways that my eyes have affected my life - big and small - that I would never have expected in my healthy eye days.

    *My mantra on leaving the house is now: phone, purse, keys, eye drops.
    *I wear stronger colour lipstick since I've abandon most eye makeup - actually a look that works for me!
    *I wear sunglasses a lot more so hopefully fewer eye wrinkles when I'm older
    *I'm become a lot less accomodating in stressful situations. I'm going through enough as it is, if something stresses me out now it gets dealt with sharpish.
    *I've become more compassionate towards people, and I appreciate how the little things can get to people and that people just sometimes need to talk. However this does not apply to people who just enjoy complaining about everything (see above point ^^)
    *I miss driving, cycling and swimming more than I thought I would
    *I've realised how amazing my family and friends are.
    *I've realised how dirty restaurant and pub tables can be - I ain't leaving my eye drop vials down on that!
    *I'm more aware of my environment, and can tell you exactly where that draft is coming from!
    *I know which pharmacies overcharge!
    *If an outfit doesn't have a pocket, I'm not interested. Where would I put my eyedrops? Oh the joys of finding a pretty dress with pockets in it!
    *I appreciate the simple things in life
    The eye altering, alters all - William Blake

  • #2
    Originally posted by Súil Eile View Post
    .......
    *I've become more compassionate towards people, and I appreciate how the little things can get to people and that people just sometimes need to talk. However this does not apply to people who just enjoy complaining about everything (see above point ^^)
    ....
    *I'm more aware of my environment, and can tell you exactly where that draft is coming from!
    ....
    *I appreciate the simple things in life
    I can certainly relate with all these!

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    • #3
      What a nice post! I think everyone here could add something to your list, here are my contributions:

      - I miss reading real books with PAGES and WORDS. Audio just isn't working for me considering I'm asleep within the first 10 minutes.
      - Eyedrops are going to put me in the poor house so I spend less on stuff I don't need ... like Twinkies.
      - I'm not the materialistic person I used to be. Flat screen TV? Who cares, I can only listen to it half the time anyway. Having stuff means nothing now.
      - I have learned that there is always someone out there worse off. I lay my head on a fluffy pillow and cover up with a warm blanket every night. There are so many people in the world that don't get that luxury.
      - I have not yet learned how to handle my fears of the future. Guess that will come with time.
      - I know now that drops are cheapest at Walmart.
      - My pretty eyes are no longer and I'm OK with that.
      - Sleep is my best friend and Schirmer strips are my enemy.
      - I appreciate DEZ for keeping me sane.

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      • #4
        Originally posted by Jasper View Post
        - Eyedrops are going to put me in the poor house so I spend less on stuff I don't need ...
        This definitely!!!

        I should also add that it's the only reason I've ever been glad of Ireland's damp climate
        The eye altering, alters all - William Blake

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        • #5
          Originally posted by Súil Eile View Post
          I should also add that it's the only reason I've ever been glad of Ireland's damp climate
          Heehee... I used to just hate rainy days... now I revel in them! All that humidity is fabulous!

          In summertime, when my kids are napping in the afternoon, I like to go outside on the deck with my laptop.

          On rainy days, I sit on a lounger in the garage... I must look so strange... I mean really... NO-ONE sits outside in their garage for goodness sakes... But there I am... letting my eyeballs soak up the humidity, reclining on a lounger, laptop on my lap, little table beside me with my snacks, waterbottle and eyedrops! Oh, and to complete the look, wearing my Wiley's sunglasses (must look so odd to be wearing these on a cloudy day when it's pouring rain!)

          Oh! And must not forget the sound effects coming from my computer... Workrave goes off every 15 seconds with a little musical chime to remind me to blink... if I ignore the reminder, it makes an alarm sound! haha Man... my neighbours must think I'm SO odd!

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          • #6
            The plus side of DES

            Saag, you crack me up!

            Things I appreciate:

            We frequently have YEARS of low rainfall, so rain was always welcome, but now doubly so.

            Talking books! Yeah, I can fall asleep during them, but that's not a bad thing when I have fibromyalgia messing with my sleep anyway. I listen to books I wouldn't bother reading (fiction), so hey, it's broadening my social horizons.

            And on the subject of sleep, who would deny someone with health issues the necessity of getting enough? I don't have to keep up with the frantic pace some people impose on themselves and no one dares tell me I'm a slug-a-bed.

            Radio. We are fortunate to still have good, tax funded public radio here. Talking programmes are great for 'those days'.

            Low end strip malls. No or little AC!

            Saving money on not buying eye makeup means more $ for better foods or maybe saving up for Wiley's (or clothes that make you feel good about yourself)

            The local hydrotherapy pool. Incredibly humid atmosphere from the warm water.

            Having a small bathroom means it steams up faster!

            Another plus, when you have any chronic (my least favourite word) health issues you find out who are acquaintances and who are friends .

            Cheers,
            Polly(anna)

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            • #7
              Originally posted by FearlessTearless View Post
              ....Another plus, when you have any chronic (my least favourite word) health issues you find out who are acquaintances and who are friends .

              Cheers,
              Polly(anna)
              A famous quote I once read says if you die with 5 people you consider real friends you are very fortunate.

              I went into this DE thing with what I thought was 4 or 5 good friends and walked out with 2. One I would have never guessed and I didn't consider a good friend and one that was "placed" into my life through this ordeal.

              True, it can surely weed out the acquaintances from true friends.

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              • #8
                Just realised my eyes are becoming my trademark. I was at a conference and one of the presenters was surrounded by people trying to network and flatter him after his talk. He noticed me and said "ah, how are the eyes?"! He had remembered me from last year as the one putting in the eye drops. He had been fascinated by my condition and had obviously remembered! I didn't even have to reintroduce myself. My eyes may have been the reddest at the conference, but everyone else's were a jealous shade of green

                I've taken to carrying my eye drops (single dose units) in a neon pink travel soap dish with a lid, and leaving it beside me on the table when I'm out. Now people associate it with me. I'm going to have to get different colours to match my outfits and handbags.

                Also, most people here are lamenting the end of summer as we've had torrential non-stop rain for two days. I'm loving it!
                The eye altering, alters all - William Blake

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                • #9
                  I don't want to ruin the party but this is very depressing. I guess all I'd want to be reading is how little impact DES is having in your lives!

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                  • #10
                    Originally posted by Ariel View Post
                    I don't want to ruin the party but this is very depressing. I guess all I'd want to be reading is how little impact DES is having in your lives!
                    I would love to be the first one to do that very thing for you when I get the chance!

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                    • #11
                      Originally posted by Ariel View Post
                      I don't want to ruin the party but this is very depressing. I guess all I'd want to be reading is how little impact DES is having in your lives!
                      Not all impacts are negative...sometimes it just means things are a little different!
                      The eye altering, alters all - William Blake

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                      • #12
                        This is lovely. How many times people I respect have told me "you can't change what's happening to you, but you can change how you react to it." So frustrating, so entirely true.

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                        • #13
                          Surely this depends to the severity of one’s symptoms. Over the years, I have often found it hard to maintain a happy outlook and permit a compassion for others to flow uninhibited. Blame it on two decades of dealing with dry eye and other conditions but I’m only human.

                          Never in all that time have I found suffering to be ‘redemptive’. All this significantly impacted on family members and it is they (rather than me) who were strengthened. They would have preferred it to be otherwise and rarely did they complain. If my children (now adults) had one wish, it was for me to get better. Imagine a pre-internet time: alone with one's thoughts, hours spent waiting to see doctors, days spent in darkened rooms, incapacitated by discomfort. Lots of time to reflect on the impact of suffering on the soul and not getting answers.

                          I don’t really care who knows about my `bad' eyes or who doesn’t but I refuse to be defined by them. I still suffer the occasional trite or sarcastic remark about my `condition’ but I'm reasonably quick with an appropriate response. All done with a smile on my face of course.

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                          • #14
                            when you grow up you hear about debilitating conditions...these things never seem real, and if they do its something that heppened to someone else or because someone got in a horrible accident...

                            dry eyes is the epitome and what anyone would fear. a completely disabling, invislble disease with constant severe pain that affects possibly the most important sense we have, one that we receive 85% of our input from. it is especially horrible because of the limit of treatment options as well as the ridiculous idea that people should live with it, as well as the fact that it can come on so suddenly (for me in a period of hours). it is also especially cruel when you see whats physiologically wrong, in my case a stupid little oil thats coming out a little less than anyone else

                            i think you can only appreciate it if theres an end to suffering on the other side

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                            • #15
                              While I have no doubt that most of us are suffering on a daily basis in a most frustrating way; there is a secondary aspect of dry eye and its evil side kicks that are parallel to the pain and discomfort. There are little ways that our eye conditions affect our lives, and everyone from mild to severe sufferers will go through those changes to lifestyles that we didn't expect.

                              I despise the notion the suffering will somehow be our salvation. Suffering is nothing more than a huge pain and source of furious frustration. The only benefit to suffering is when it ends. It will not make us better people nor will it be our saviour in the long run.

                              But sometimes I need to look at my DE beyond just the burning and itching and darkness. I need to see it as something that changed my life in the same way as a new job changes my life, or gaining an allergy changes my life etc. Pain cannot be the be all and end all. That's what brings us all down. I had a blister on my foot today, so I needed to use a plaster and wear comfortable shoes. I had dry eyes today so I had to use drops and take the bus instead of drive.

                              I know we are all feeling pain and frustration, but if every conversation about the affects of dry eye focuses on the pain then we're walking through a very dark tunnel indeed.
                              The eye altering, alters all - William Blake

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