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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.

Comments

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(Anonymous)
Feb. 3rd, 2009 07:25 am (UTC)
Hi, Nickie,
I'm really glad you decided to post this entry!
I've been dealing with a lot of the same feelings as you are. There are no easy answers that I have found yet, either.
In fact, I found a counsellor to work with here (a great community place where you can get super-low cost sessions for a limited time) so I would have someone to help me deal with the feelings of anger, fear, loss of hope and powerlessness which can come up for us - and sure has for me.
What we spoke about today was how there are all these external things that I keep so busy with - like fighting workers' compensation for help, dealing with many doctors, keeping medications in check, etc. - that I don't often have the time to look inside myself and honour the intense feelings of sadness which have come with this disabling condition.
Doctors will hear symptoms (if you're 'lucky') but they don't tend to look at how this THING called RSD/CRPS makes us FEEL.
Something which causes such incredibly intense pain, is not easily controlled and may and does spread in your body is rather scary, if you ask me!
I decided today that I would care for my real feelings and give myself the space and quiet time to let those feelings just BE. I feel sad and want to cry. It is NORMAL to feel sad in this situation!
I also believe there is always hope, always something coming around the bend... but when that hope fades... sometimes we need real help to find that spark of hope again.
It sounds like you're already taking some wonderful steps to care for yourself, mind and body and I applaud you for your efforts.
And if those feelings of hope are harder to find, I would encourage you to seek out someone to talk to who understands/has experience with people with chronic pain or disability, etc. Having a sounding board, someone to look objectively at your situation, can offer real support.
But I bet you already knew that! I just wanted to send my support and encouragement across the wires, so to speak. :)

Every day with RSD/CRPS is a challenge, one you've been meeting and more. Don't forget to give yourself the old pat on the back for all the hardships you've worked to overcome!

Thanks for continuing to reach out here on your Nook.

With gratitude,

Lisa
puppybraille
Feb. 7th, 2009 02:18 am (UTC)
Hi Lisa,

Thank you for your comment! I can't express how much I appreciate it, after this week, I needed to read what you wrote again. Your words are helping me. Thank you for being there for me.
momof3bbp
Feb. 8th, 2009 09:56 am (UTC)
Thanks
Thanks for continuing to chronicle your struggles. Though I don't face physical pain on a daily basis, I am no stranger to emotional pain. The Chronic Babe blog helped as well. Hang in there and I am praying for you.
puppybraille
Feb. 9th, 2009 03:44 am (UTC)
Re: Thanks
Thank you for comment and for praying! Right now, I need prayer more than you can know.
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