A Day In The Life Of Coping With Chronic Illness

It’s been a rough week, but somehow I am still moving forward.

Even though the list of things that aren’t working quite like I might want them to continues to grow (my hips are locking up, my eyes constantly burn, my left knee is grinding, my hands are increasingly being pulled out of shape, my thigh muscles are a mess, and the list goes on and on), I find myself turning to what has helped me so much during previous crisis moments: focus on what is going right in my life. And just as easily, I find myself building another mental list; a list that motivates me to keep moving forward, no matter what is happening to my body.

For example, I have lost five pounds in the past two weeks. I continue to do fifteen minutes of gentle stretching and range-of-motion exercises, exercises that have already shown great results when it comes to problems in my shoulders, upper arms, and back. I am surrounded by supportive and caring people, both in my real life and in my online activities. I, along with a great team of directors, are in the midst of strategic planning for Show Us Your Hands!…and given the opportunity and the time, I could continue to add an infinite number of items to this list of things that are going right.

That said, dealing with a flare of this nature is still very challenging; so much so that even though I have no doubt that I will continue to get through each new day, I am feeling worn down. Like those of us who live with this know all too well, there is a certain point where no amount of rest will fully re-charge our batteries…we just have to learn to continue to make the best with what we’re given at any moment in time, whether is comes to the amount of energy we have or how much we are (or are not) able to move our bodies.

Yesterday afternoon, I started feeling somewhat startled. Over the past couple of years I’m never had much of an issue when it comes to connecting to the inspiration that resides within me. Now that I continue to face challenges that are both known (in what they are) and unknown (in their severity), I’m starting to find the exact opposite to be true…and while I know I need to allow myself the opportunity to experience this wide range of emotions, I also know that I cannot allow myself to enter into a backward slide towards the darkness, and towards the depression.

I found myself returning to my trusty three-point plan; a plan whose power belies its simplicity.

1. Accept everything exactly as it is right now.
2. Figure out where I want to be, and what I want to change.
3. Do *everything* possible within my control to get there.

And yesterday, at least, step three meant finding an outside story of support and inspiration that I could use to re-build some of those internal feeling that were starting to slip away.

One friend recommended Flying Without Wings: Personal Reflections on Being Disabled by Arnold Beisser. (Unfortunately this book is only available in print format, which means it will be some time before I can get my hands on it.) Another friend recommended Strong at the Broken Places: Voices of Illness, a Chorus of Hope by Richard M. Cohen. My search soon led me to another book by Mr. Cohen, Blindsided: Lifting a Life Above Illness: A Reluctant Memoir. I decided I would start there. (As an added bonus, this book is available in audio format!)

One of the most frequently received comments that I receive from readers of this blog is this: “When I read your words it feels like I am reading my own thoughts.” As I started listening to “Blindsided” yesterday afternoon, while sitting in the back of a taxi on my way to physical therapy, I could not help from thinking the exact same thing.

“I am not just a collection of muscles and nerves, the wiring that has short-circuited my dreams. Who I am, my very identity rests in my head. It is from that fortress, my command post, that my being takes shape. Citizens of sickness, those who suffer from their own assaults on body and spirit, know disappointment. Ours is a common siege. The battle to control our heads is every bit as important as combating the attacks on our bodies.

The psychological war with illness is fought on two fronts, on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. The positive impulse must struggle to survive in a troubled mind. I skirmish with myself, in an effort to shield my eyes from the harsh sight of the diminished person I believe I see looking from the mirror.

Self-pity is poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.”

In light of a disconcerting trend that I have noticed over the past few months, where some individuals feel the need to attack others (including myself) for choosing coping methods that are different from the ones they themselves use–an attitude that was clearly demonstrated in a message that I shared on my Facebook page last night–I found the next paragraph to be particularly poignant.

“…this book is not about sickness, but about the search for emotional health. This is not the answer, but only an answer. Coping is a personal art. There is no element of science in coping, no formula or objective standard for measuring proficiency. Coping is measured against only how you want to live and what you think works.”

Here’s hoping for the best of success for each and every one of us, when it comes to coping with the challenges that chronic illnesses introduces into our lives. Here’s hoping that we all continue to learn and grow, not only as individuals, but also as the wonderfully supportive community that we are.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

3 Comments
3 comments
  1. Gillian Pidler says:

    Yet again another brilliant post RA Guy. I think we all have our own methods of coping with our illness’s, whether that be to turn in on ourselves ( I do this when in very severe pain), or to try and make something positive out of something negative, have a laugh about it, it’s better than crying and I do this very often.
    I don’t wish to pull others down with negativity so try and keep a good sense of humor about all those little things that I may have to deal with on any given day. That’s not to say that I don’t ‘deserve’ to have days when I wish it all away and yes maybe even get angry at my RA/body. RA is a roller coaster so it only follows that our emotions should go up and down with the ride.
    How we choose to deal with it is a personal choice but I’d far rather be the bubbly, happy, funny person I was before all this than the scared, less bubbly, less energetic girl that I find I now see looking back at me from ‘my’ mirror & that’s the side that I prefer people to see, that I’d want them to remember one day when my time is done.

  2. Carla says:

    I hope the flare lessens and passes completely. Best wishes on getting your referrals for medical attention in the US. I have been so mired in my own situation I missed your request for help. If you still need anything let me know. I want to read stories of improving health on your blog!

  3. Sallie says:

    Just to share, I was equally disappointed to find out that Flying Without Wings wasn’t available in audio book. Not being able to hold a book up was a very early symptom that I ignored for so long. I guess it’s easy to put down to tiredness.when you constantly work 70+ hours per

    Thank heavens for my iPad cover, at least that makes sure the device bounces every time I drop it (as witnessed 2 minutes ago) .

    Carry on inspiring and amazing!

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