Leaning into the Sharp Edges

canstockphoto5504066After a long trip away from home, I’d hoped to return with a renewed sense of purpose after school year and winter burnout. Hope can be a demoralizing emotion at times. The “eye thing“, as I’ve come to call it, got worse while on the road, leaving me crying in a hotel room with my husband rubbing my back as I got through another painful episode of stabbing, burning pain. I’ve been through labor and delivery of a child. This pain feels much worse, especially with no end in sight (she smiles wanly at the pun).

Recurrent Corneal Erosion Syndrome (RCES) causes my eyelids  to adhere to my corneas, ripping away the top layer of eyeball cells, exposing nerves and causing severe light sensitivity. I am now afraid to sleep. Being exhausted and miserable is impairing my judgment, my sense of normalcy, any ambitious thoughts of turning this ship around. The pain alone is exhausting. Combined with a lack of sleep, I am a miasma of crazy just waiting to happen.

I try to intellectualize how to balance. How to not be afraid. How to let go of expectations. There are so many people who have encountered this beast. I have been fortunate, until the last year, to not know chronic pain. Some people crumple and shrink and become smaller. Some people are defiant and buoyant and astound the rest of us.

Whenever I have read accounts of suffering – whether it be about the suffering in brutal war or of chronic illness, I am amazed at the fortitude of humans. I am grateful to be where I’m at and wonder, in the back of my mind, what kind of person I’d be in those circumstances. There are doubts.

Lately, I’ve felt small and oppressed by my body’s treachery. I can’t see joy for the anxiety of what the next moments hold – more pain or momentary rest? If I imagined this pain to be a lifelong battle of management and containment, would I want to be this lifelong person, shuttered and defeated in the face of pain? The answer is a resounding “No!”

I’ve researched all the treatment options, read up on homeopathic and nutritional approaches, visited the many, many forums of people living with RCES. Knowledge fortifies me, gives me some sense of control and puts me on a path of my own treatment. The doctors become my consultants, not the authority figures dictating the next step. I have assumed responsibility for my own care and likewise, must assume responsibility for the person I will be in the face of pain.

I have always believed character truly reveals itself under pressure, but I don’t know if it’s true. We are human. Sometimes we snap irritably when we mean to say “it hurts”. Sometimes we run when we should stand our ground. Sometimes we turn a blind eye when we should blow a whistle. We all want to believe that under fire, we’d behave honorably and bravely, but can we fault others when their instinct deems otherwise? Because we just don’t know.

I am where I have not been before and it is an opportunity to learn – to learn about myself, to learn new skills, to see if I have the mettle to stand my ground and not give into hopelessness. For me, seeing this as a challenge to undertake makes it better somehow.

At 2am, it happened again. Searing pain followed by burning and tears. I leaned into it. I lay there forcing a measured breath, in and out, in and out. I imagined sending those breaths to my pain, allowing them to wash over me, over the wound, over my fear that it would continue. I sank into it and thought “I can do this moment”. Slowly, in the hour of moments that passed, the pain subsided.

I can do these moments. In this moment, I feel joy at the emerging sunny day, the cats snoozing happily in the window, the pleasure of expressing myself in words. The big picture – the optimism of cure or pessimism of long term pain is useless. Maybe the next moment, the next word, the next thought is all I can reasonably handle. I hope that I handle it well.

62 Comments on “Leaning into the Sharp Edges

  1. Wow! That sounds pretty excruciating. I am sorry you have to go through this. I hope whatever you are trying begins to help soon.

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    • I do, too. With no end on the horizon, though, I have to decide here and now that it won’t overtake every aspect of my life. It’s pretty easy to sit about feeling miserable and hopeless when in pain. I’ve been doing some great reading on meditation and pain management, though, and it’s been helpful.

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      • Meditation is amazing. Years ago I took some guided meditation classes. Our instructor told me he was part of a study at our cancer hospital. He worked with 6 terminally ill patients, all of whom had less than 6 months to live. All exceeded the 6 months, some by as much as 6 months. All enjoyed a better quality of life with significantly less pain (mental, spiritual and physical) and all died much more peacefully when their time finally came.

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        • The human mind is a pretty amazing thing and I have found meditation, for nearly any stressful or anxiety-producing situation, to be useful. Breathing deeply is a great tool, as well. We never realize how short and shallow and tight our breathing is until we slow it down.

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        • I agree. Of course breath work is very important in meditation and also in yoga and pilates.

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  2. Sorry to hear you’ve had these painful episodes. Like for any condition, getting as much knowledge as possible is powerful and enables you to optimally use your consultants – we’ve learned that in dealing with my husbands chronic heart condition. Sending warm thoughts of strength and healing in your direction.

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  3. I am faithful you can handle it. One of the best things about your blog is that your courage and strength radiates in your posts. I admire that. I need the same will and determination now. I envy how you have taken control of a difficulty. Wishing you well always!

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  4. My very very heartfelt sympathy. You’re faced with a journey requiring great courage. It sounds like you have it.
    Don had it for a while, though maybe not as badly as you. His (Canadian) doctor prescribed “Refresh Lacri-Lube”, a lubricating ophthalmic ointment. Because it makes your sight blurry you can only use it at night before bed. He’s not had the problem since he started using it several years ago. He uses it every night and says he’s too afraid not to use it because of how painful it was before he started using it. During the day he uses natural tears (the one with out preservatives). I don’t know if this is helpful or not. Don was simply diagnosed as having “dry eyes” (duh), but it was described to him as being exactly the problem you have – eyelids adhering to the corneas and ripping away the top layer of cells.
    I wish you all the courage and strength you could ever need, and presence for “this moment”.
    Blessings
    Alison

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    • Thanks, Alison. I’d never heard of RCES before I went to the eye doctor for the pain. Dry eyes exacerbates RCES, so I am using drops during the day, ointment at night, staying hydrated and taking flax seed and fish oil (supposedly helps eyes stay lubricated). This condition can be a complication of disease, or related to old injuries and surprise, surprise – most common after the age of 40. I have a couple of old injuries and hit 46 this year. Beyond that info, time is the biggest healer, but healing time can go for months or years, with many recurrent episodes along the way. Management becomes a lifetime thing.
      I understand what Don means by the fear of not using ointment at night – nothing worse than closing your eyes to sleep, not knowing if you’ll open them to searing pain. You do whatever you need to do!

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      • Okay, I kind of expected that you would say you’re already doing the ointment and drops, but thought I had to mention it just in case. Hope your healing time is short!

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  5. My sympathies, it sounds dreadful!!

    For what little it might be worth, I’ve had some luck fighting through pain with what I was told is an old Indian saying, “Pain is just an opinion.”

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    • I’ve been reading a lot about how you can use your mind to overcome pain signals. It can apparently be a very loud opinion, because I haven’t mastered those skills yet!

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      • I’ve never been certain just how effective some of these techniques are in the face of truly severe pain. For what little it may be worth, what success I’ve had seems to come from almost embracing the pain, accepting it as a sensation, and not trying to fight it.

        It seems similar to how I learned to deal with a buddy’s immediate and constant snoring on camping trips. Trying to “not hear” it — fighting it — just made for sleepless nights. It was when I accepted it and stopped fighting it that I could tune it out and fall asleep.

        Obviously what works for one may not work for all. I saw your note about a bandage. Hope things improve!!

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        • I try to remember that pain is the brain sending out signals to prevent further harm or damage, but I’m not sure about the efficacy of creating different messages to ease pain. I know there have been studies done – I just haven’t had the chance to read them. Sleep is welcome relief with the contact bandage and can only help in the healing process. Thanks for the good wishes!

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  6. Dear Michelle,
    So sorry to hear of you pain and illness. I recently read a story bout this disease –suffered by a Fox anchor. She was successfully treated. I am on my iPad, and not at a real computer so I cannot find the article. But I will find it and see if it is the same condition and if you might benefit from it.

    I have had chronic illness and pain for many years. Be good to yourself!

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    • Thanks, Elyse. I’ve read some of your posts regarding health issues and you are one of the people I thought of when thinking about people who have dealt with chronic illness. It is a lesson for me, as I have been fortunate to have good health most of my life. Besides learning to develop my own coping skills, it’s yet another way to cultivate compassion for others. And that’s all the spin I can manage for now!

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      • Chronic illness does, suck. But what can you do except grin and bear it? But do be good to yourself — indulge in something when you can and when it will make you feel psychologically better. And get good treatment.

        I found the article I was talking about — I don’t know if it is your condition or if it is a different one — but the moral of the story is that if you don’t get an answer from one doctor, find another. Personally, I go to teaching hospitals for my care. It means that there are always extra eyes and hands on you, but often that is a good thing. More brains working on my problem, the better, I think. And teaching hospitals tend to be leading edge — they are teaching others so they tend to know what they’re doing. I like that.

        The other thing I always suggest is DON’T BE SHY! There is a time and a place for it. Block the door if you must. Take notes. Bring questions with you. And any question you think might be too stupid to ask the doctor? ASK IT!!!! Those are often the most important ones.

        Here is the article: http://www.washingtonpost.com/national/health-science/fox-news-reporter-struggled-with-painful-eye-condition-for-more-than-a-year/2013/06/07/ff04c3b8-b734-11e2-92f3-f291801936b8_story.html

        Good, good luck with this. And keep us posted.

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        • PS – This is exactly what I am dealing with – I have an awesome doc, though, who saw right away what the problem was. The anchor’s story is like many stories I’ve read, so I feel fortunate that I landed where I needed to be. It’s a tough condition, but I’m never afraid to seek out multiple opinions to weigh my options.

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        • Then you will be fine. Shyness when dealing with medical folks is totally the worst approach.

          Hopefully, the treatment will work before you get bored with hearing yourself talk about it. I don’t write much about it (in spite of the fact that I am currently having trouble). It is so boring. So deadly boring that I use my writing as my escape!

          So here’s to hearing all about it until it goes away.

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        • Thanks! I worked at a university hospital and coordinated a residency program for a few years – I ain’t afraid of no white coats! They’re a little scared of me at times. I see that attitude of reverence all the time – people not questioning doctors and specialists and suffering so much because of it.

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        • I work in medical litigation and am married to a lawyer. They bow before me …

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  7. What a wonderful blog.
    I too live with chronic pain …
    There is a lovely book that helps me called ‘How To Be Sick’ by Toni Bernhard. Although written with M.E. in mind she offers simple and beautiful Mindfulness exercises for dealing with the challenges of any illness. I highly recommend it, it’s on Amazon if you want to take a look.
    Wishing you better days soon.

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    • I’ll check into that book – I appreciate the recommendation. I’m sorry to hear you’ve had need of it. One always hopes to exhibit graciousness and resiliency in the face of struggle, but like most things, it often does not come naturally. There’s always some work and thought required to get there. Thanks, Helena for your good wishes.

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  8. Michelle, so sorry you are having to suffer through this — hoping the condition turns the corner and it coincides with an extended summer season 🙂

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    • I hope it resolves soon as well, but in the face of not knowing, I am determined that it not define my every moment. And yes, a longer summer (or even better, endless autumn) would be wonderful!

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  9. Having read all of the very thoughtful comments here, you certainly are not lacking in sincere well-wishers. I just wanted to let you know that you’re in my thoughts and when I next meditate I will think of you and send healing light your way.

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  10. Green, how crappy. I’m amazed you write so eloquently about chronic pain being new to the reality. Way to tackle it moment by moment. I hope you find some reliable management for it somewhere down the line.

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    • Writing is often how I process my own thoughts and work out what my perspective needs to be, so it is very useful. Also, as much as I’d like to write about a wide range of topics, whatever is most immediate is going to be what comes out. I am hoping that in the days to come, I’ll have the wider view again.

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  11. Hi Michelle, also very sorry to hear that you are suffering in this way. It sounds similar to a condition one of my family has – I’ll check and see if they have any tips if so

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  12. I’m sorry you have to go through this and am amazed at your strength. That you even have the energy to want to approach it diffently shows how incredible you are.

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    • Thanks, Joanna, for your kind words. We often have things happen to us that are outside our realm of control, so I have decided that I must focus on what I can control. Usually it’s attitude and perspective, as well as a willingness to be open to ideas. I hope that I can cultivate a positive approach and perspective, since it will impact my health, as well as my quality of life.

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  13. I feel for you, Michelle. I wish this will pass soon.

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  14. Oh, Michelle. I am so horribly sorry to hear this. What a damn difficult thing to live with and to anticipate. I, too, am amazed at your courage and acceptance. You inspire me. Hang in there. Do whatever works for you. Don’t withdraw from life.

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    • Thank you for reading and leaving such a nice comment. I am determined to move forward through this fog. Either I get better or I learn lifelong management, but I’m still prepping for a taekwondo belt test, writing (with copious eyedrops and breaks) and getting on with the business of living.

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      • And that’s exactly what you need to do.

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  15. I’m betting you’ll handle it with grace, style and a sense of humor.
    And you’ll take your frustrations out on the first doc who ways something stupid.

    And here’s my stupid question (but I’m not a doc so it’s okay) (I hope) – would squeezing eyedrops between your lids help before you opened your eyes?

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    • Thanks – I’m hoping no doctors are harmed in the making of this success story! Your question is not at all stupid – this is what a lot of people with RCES have to do. I’ve been trying to train myself not to open my eyes upon waking and get the drops in post-haste. I’m getting better at it, but haven’t mastered it. I’m one of those people who is accustomed to popping off the bed and getting things done. This grasshopper is having to learn patience!

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  16. That sounds so hard. I have no advice, just empathy.

    Well, maybe one piece of advice: see if your community offers Chronic Disease Self-Management Classes. It sounds like you’re already doing a lot of what the classes go over, but they might be a good source of support.

    As Glennon Melton at Momastery says, “We can do hard things.”

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  17. I hate this for you, Michelle, but you’ve taken the only real perspective that makes any sense. I hope you’re able to devote the concentration to this that you need—I know how hard it is to switch gears from the daily List of Things to Do to surviving the current moment—without guilt or shame. This is your Work now.

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    • Thanks. You make a good point about switching gears – that’s a challenge for me. Nothing else has changed except my ability to keep up with daily life with any sort of coherence. Guilt is often my pilot! Thanks for the succinct reminder that my focus is where it needs to be.

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  18. This sounds so awful. I am sorry you have to deal with this, and I admire your calmly written thoughts on this. I’m thinking of you as you deal with this!

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    • Things are improving. I have a contact bandage on now, so I have managed sleep (will improve nearly ANY situation!). Hoping it will allow my eye to heal. Thanks for your kind thoughts!

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  19. I think one of the things about chronic pain is the loss of control – and it sounds like you are finding techniques to take back control.

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