Nickie Coby (puppybraille) wrote,
Nickie Coby
puppybraille

The Long Long Road To Hope

Maybe it's because of the recent Inauguration and the movements for change, but optimism and hope seem to be on a lot of people's minds.
Chronic Bab is Embracing Optimism
and at How To Cope with Pain, readers are thinking about
how to maintain hope
and to be honest, I'm not sure how to do it.

Lately, I just feel beaten down, like the RSD is winning, no matter what I try. And now that I'm feeling the burning pain in my right foot, I wonder if there is any hope of ever feeling better again. All I can find on the subject of spreading RSD is that it's bad news. I have yet to find out how it is diagnosed or treated. I can't tell you how awful it feels to not be able to count on either of my legs. On one hand, my right leg did so well for so long that I feel like I shouldn't complain. But on the other hand, the pain in that side is hard because right now I have no "good foot" to help pick up the slack.

How does one find hope when it has escaped completely? I try to pray about this, and yet no words come out. I try to hope that things will get better, but I've run through almost all but the most invasive treatments and the only other potential, somewhat experimental treatment I've been given the chance to do would be very difficult to do during school. I keep wondering if I should change my mind on the implantable stimulator, or if I should hold my ground. I don't want to make a dumb decision out of desparation, but I also feel like I need relief to be able to actually live my life. Right now, I just feel like I'm surviving it and using up oxygen.

All I can do is try to find ways to daily feel like I am contributing to wellness. In other words, keep working on biofeedback, do my pool therapy, try to use other complementary techniques and tools to help take some of the stress off of my body and mind, make the attempt to pray and find ways to keep myself engaged. It doesn't necessarily feel like hope, and sometimes the prospect of a long life ahead of me with this disease makes me want to hide somewhere, but it's all I can do. This isn't exactly one of my better posts, and part of me wants to exit without saving, but I feel like my readers should at least get to know that when I'm not myself, the fear of spread and the lack of hope are the reason.
Tags: anxiety, chronic illness, chronic pain, health, hope, rsd sucks
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