Challenges for November 13

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 13

A picture of something you have taught another about having CRPS/RSD

This is an illustration from my article "So you've been diagnosed with RSD and/or CRPS; what now?" which is the article which I've most often been told was really helpful in increasing understanding and reducing the fear of the diagnosis. It seems funny to be linking back to another part of my blog, but there we have it, this is the venue I do much of my work in education. So here it is:

So You've been diagnosed with RSD and/or CRPS... What now?

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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 13

Evolution
Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

As I've mentioned, I have had chronic and critical health problems most of my life, so I did not experience some of the changes other sufferers of RSD/CRPS who were completely healthy prior to it did. I also had experience of disability, but almost always thought of it as "temporary", even though  some of that was the wishful thinking/immortality of a teen...  When I was told that I would always need to use crutches after my multiple failed knee surgeries for hypermobility that caused my first experience of RSD, I didn't believe it for a moment. And I was right, sort of. I was lucky enough to enter remission and recover enough so that I only needed to use an aid for hiking or in bad weather when the arthritis got bad.

The biggest change and challenge of my experience with adult disability has been that of dependency. I have had years of being confined to bed or wheelchair, and even at the best of times, the loss of the use of my arms was actually far more painfully disabling than the loss of my legs later became... as an artist I thought of myself as "hands and eyes" and the RSD/CRPS took both, in varying degrees. But back to dependency... this has been, and continues to be, one of my hardest challenges. I am so blessed in having a supportive family; I know they do not hold it against me, but I am also a terribly independent creature, and even more, a mother, to the bone. Which means others are dependent upon me, and that is the natural order, it's what is meant to be; end stop, period, that's it.

But here I am. Even with all the progress I've made, some days I need help to dress in the morning. Most days I need help with shoes and socks. I cannot carry my own purse, cook a meal for myself or others, be on my feet reliably long enough to do a trip to town without the wheelchair, though I often manage without it in the house. When in the chair, I have all the issues that go with that in a world that is patently *not* accessible; needing help over bumps and doorsills, with transfers and doorknobs. Even at home, most of the basics must be "set up" or actually done for me. Because I have not only the RSD/CRPS to deal with, but the constant risk of anaphylaxis, my family rarely feels happy to leave me alone in the house for any length of time. They need to adjust their schedules for me, work around my needs, every day and in every way.

And I hate it. Basically, I still, after all these years, simply want to make this *not be*... to change it through my will; but we've tried that (over and over again), and trust me, that way leads to misery, deterioration, more and more and more pain... it isn't good and it doesn't work. It increases the load I place on my family, and I can't afford to be that selfish. If I can't have that, I want to handle this with grace, with graciousness, with acceptance...  ah acceptance, there's the rub! When I damn myself for my lack of grace, my family claims that I do have it... but they don't know how I chafe at the bit, inside. I definitely try to be of good heart and spirit, and to act with the grace that I don't actually feel... partially because my family deserves it, I must try to attain it, and I hope that doing will eventually mean feeling, becoming. I have learned to accept a great deal of this situation; the dependency issues continue. I know that evolution can take... a wee whiley.... but on this issue,  I just hope I don't fossilize before I get there...

As for goals and values. Hmm. My values remain the same, as the ones that count are core-deep, and solid. My goals have had to shift with the many changes of my life; they are still shifting, with each and every change that occurs. Despite this last few extra challenging years, I still hold on to hope, as each of us must. I know my abilities can and will change and not always for the worst. Plasticity, plasticity, plasticity. I read up about these concepts as much as I can. Right now, I am reading "Train Your Mind, Change Your Brain - A Groundbreaking Collaboration Between Neuroscience and Buddhism", loaned to me by one of the wonderful osteopaths who offer me the greatest hope for positive change. And if positive change can happen, then I can become less dependent, less always in need of help. I hold this hope in my heart, even as I struggle to accept the things I cannot change... just yet.

 

Author: Lili Wilde
Date Posted: 2013-11-24   Date Last Edited: 2014-05-14 11:07:46