No announcement yet.

More resources for coping...

  • Filter
  • Time
  • Show
Clear All
new posts

  • More resources for coping...

    As you guys know, I've been struggling a lot with this ongoing flare up, as I try to claw my way back out of it. My eyes are improving... /big sigh of relief ... but from personal experience I know that the mental black hole you may find yourself in when your eyes royally suck (to put it mildly) is such a hard place to be. So... with that in mind, here are some resources that have helped me, and it's my hope that you may also get comfort from them:

    1. Headspace: - I'm not into woo woo at all... but this has helped me to calm my mind, not just when I'm actually doing the exercises, but somehow the calming effects last all day and into the night. The free version is fine... just do the same 10 minute exercises every day. If you like it, upgrade to the paid version for more... but you definitely don't NEED to use the paid version to benefit from it. I wrote more about Headspace in this thread:

    2. To feel less alone, this blog: - it comforted me to read her posts since the chronic nature of her disease causes all the same kinds of issues that chronic, severe dry eye and corneal pain can cause. If you get comfort from this, read it... if it makes you feel worse, then skip it. I suspect everyone will differ in terms of how they react.

    3. This book:
    -A caution though... I don't recommend this for when you're in the blackest of moods, when you're in total despair.... wait until you're feeling more stable before you dive into this book. I started listening to it (the audiobook) during that awful phase and it made me cry more, it made me rage at the unfairness of it all... Clearly I wasn't ready for the contents of this book at that time, so I ended up quitting early on in the book, deciding I'd go back to it at a later date. However, fast-forward a few weeks, and although I was still having a hard time, I wasn't in the blackest of mental holes anymore... so it was at that stage that I found this book helpful. Where this book helps is in dealing with acceptance - note, that doesn't mean giving up, it doesn't mean one has to stop looking for ways to fix things, but just to accept all the uncertainties that dealing with a chronic health problem can bring. The one thing I did not like was the touch of an accent that the narrator tried to bring to the quotes... it was distracting. But if one can ignore that, the content of the book is great and the author offers A LOT of different strategies for dealing with the mental side of chronic disease/disability. And no worries, one doesn't have to be religious to benefit from it... the author is Buddhist, so obviously she talks about that, but the coping strategies she shares have nothing to do with religion so can be helpful no matter what you believe or don't believe in. :-) I think of the words/advice in this book often, and it's definitely helping me cope better.

    4. To help alleviate the anxiety that often accompanies a disability/chronic disease (or even a severe short-term severe incident): cardio for 30 minutes 5 times a week (enough to get your heart pumping and make you out of breath) AND 30 minutes of comedy every single day. I can't take credit for this idea, but when my husband was having trouble with anxiety, a psychologist he saw recommended that he try this - and it worked wonders for him. From what I understand, the 30 minutes is important so that endorphins will be released. And doing it often (5 times a week) is important to have those endorphins in your system more consistently.

    Anyhow, laughter feels good, and the endorphins released from cardio can help your mental state. I'm not suggesting this is a cure-all or will help everyone... but it's worth experimenting with to see if it helps you since it costs nothing to try. And obviously don't overdo it... and please check with your doctor to see if it's okay for you to add cardio to your routine.

    I admit that I have not been successful at doing cardio 5 times a week on a regular basis yet... but when I do cardio, there is an undeniable relief from sadness/stress/worry for a time - it does a remarkably good job of clearing my mind. Ditto for watching a comedian that I enjoy. For this reason, I plan to continue working towards adding cardio to my daily routine.

    When I've been in a really dark place mentally, sometimes I just want to wallow in it... I lose the desire to even try to help myself feel better, which is obviously not good. If you feel that way, try to just take a tiny baby step to feel better, no matter how small... baby steps can add up to something significant eventually. I find that the tips in How to Be Sick (book linked to above) minimizes the time I spend too depressed to even want to try to feel better... they help me shut that crap down much faster, which is so helpful. Doing even a 3 minute meditation with Headspace provides a similar effect. Sometimes you just need to interrupt the downward mental spiral for a few minutes in order to start climbing back out of that black hole into a better state of mind that allows you to help yourself better.

    Lastly, obviously I'm not suggesting that one refrain from seeing a therapist if needed, looking into medication options for depression, or whatever. But whether you decide to go that route or not, these resources still may be helpful to you - especially Headspace.

    Everyone is wired differently. And, for example, if I felt like I were really, seriously considering suicide in the near future, I'd get my butt to a therapist asap... if I had an impulsive personality (rather than be the type to carefully plan every last detail), I'd be quicker to lean towards therapy sooner rather than later (since I'd want to protect myself against making an impulsive decision to do something drastic that I'd later regret... because for one thing, people often survive the drastic things they do in times of great despair and end up with even MORE problems as a result)... but either way, in the meantime, maybe these resources will help calm your mind and give you the strength you need to provide yourself with the mental clarity needed to sort out your eye problems. And by the way, if you ARE impulsive, that's not necessarily a bad thing in regular life since it can lead to a lot of fun... but when depressed, I imagine that impulsiveness can definitely work against you.... so be cautious, and set yourself up to have people to lean on, medication if needed, etc. and whatever other tools you need to manage any DARK impulses that may strike you when vulnerable - you need to ready the tools and support network to catch you when coping gets really hard.

    And whatever you do, don't feel weak for letting this get you down. People with severe dry eye (and corneal nerve pain that many of us have) are not only dealing with an invisible disability, but the added difficulty of being surrounded by a general public that is convinced "dry eye" is a minor, easily fixable issue that can't possibly be disabling... this contributes to our feelings of being misunderstood, dismissed, and so on. It is my strong belief that ANY NORMAL PERSON would have a hard time coping. But I also believe that we can learn to cope with these things in a way that allows us to increase the joy in our life (and experience way less mental pain), despite our problems.


    In case you read this from me, and think 'OMG, she's still having so many problems after all these years... if she's having problems, then I'm surely screwed!'... please read this next bit that I originally posted in a different thread in response to another member who wrote "Sorry I was freaked out by your post. I realize you are one of the oldest members of this forum and seeing you write your heart out like this really scared me. I am just a newbie trying to adapt to the miseries of life this disease has brought upon me whereas you have been living with it for much longer."

    My reply...

    "In case this is any consolation (and it probably will be), my LASIK surgeon had me on preserved artificial tears for 4 years. I was using them every 5 minutes in the beginning (192 times a day with my surgeon's blessing), and later my eyes improved to only needing them every 15 minutes... and later to using them once an hour. But I couldn't very well call in sick to avoid having to use so many eye drops since my surgeon told me to keep on doing it, that those were the best drops to use, and that my eyes were doing "GREAT!" - I figured if my doctor wouldn't back me up in needing to stay off work to let my eyes calm down, I'd have to suck it up, and heck, maybe he was right and this was within the realm of a normal recovery. Every time I checked with him and emphasized how many times a day I needed drops to function (and I checked often to make sure it was okay), he'd say these were the best drops to use and to keep on doing what I was doing because I was doing "great!". @$%@$%@$% Clearly, in hindsight, he's an a$$.

    However, all those preservatives on my eyes for 4 years may have caused permanent damage for all I know... 4 years of chronic inflammation that was pretty much untreated because my LASIK surgeon insisted I was doing "GREAT!" the whole time also likely did some permanent damage.

    So, on the bright side, assuming that didn't happen to you, assuming you didn't bathe your eyes in preservatives up to 192 times a day for months so you could keep working, then 64 times a day for many, many months once things "improved", then a mere 8-16 times a day for a long while, I bet you have good odds of recovering better than I have. I'd be optimistic if I were you... because my situation is especially freakish and most people don't end up like me."

    Anyways, if anyone else has any recommendations for books/audiobooks, and other tools to help manage the mental side of dealing with this disease, please add them to this thread so that others can benefit, too. :-)
    Last edited by SAAG; 20-Jan-2019, 05:27.
    Yet another post-Lasik (2005)...
    Anyone have a time machine so I can go back and undo this mess?

  • #2
    Another audiobook suggestion:

    hopeful_hiker also recommended this book in another thread:

    An audiobook format is available, too... which is what I will be using when I check out this book.
    Last edited by SAAG; 19-Jan-2019, 06:22.
    Yet another post-Lasik (2005)...
    Anyone have a time machine so I can go back and undo this mess?


    • #3
      Thank you for your post. Iíve struggled with dry eye for 25 years and will continue to maintain a positive outlook because of people like you.