FWD: RSDHope-Walking One's Person's Experience

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From: byrd45 (Original Message) Sent: 4/18/2006 5:55 PM
AMERICAN RSDHOPE UPDATE

WALKING, ONE PERSON'S EXPERIENCE

I wanted to share this story with you. I hope you enjoy it and find it helpful.

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I wanted to share an experience I had today and at the same time maybe help someone out there who, like me, has struggled with walking in the past and/or present due to RSD or some other form of chronic pain. My name is Keith Orsini and I have Reflex Sympathetic Dystrophy. I also have failed back syndrome and a few other things that make walking quite painful but the alternative is much worse, so I gladly walk whenever I can as much as I can

I was walking in the Mall this morning. I walk there on the mornings that I don't have Physical Therapy.

Forgive me if I repeat some of what I have said to some of you before about this but it is pertinent to this story.

Twice a week I have aqua therapy. It is mainly for my RSD and my back but also for the degenerative disk disease in my neck and lower back. It is the only thing that helps any of these problems besides walking. It has the added benefit of decreasing the allodynia (sensitivity to touch, sheets, clothing, etc.).

On the days that I don't have aqua therapy I walk over at the mall. It is a fairly large mall so each circuit takes about 15 minutes. They open up early just so people can walk there. It's nice, you can get some air, see different people, get out of the house, and get exercise all at once and you are protected from the elements. In Maine that is pretty important in the winter time!

When I first started walking there a four months ago I was barely able to go around more than once. I had just finished with a new medication trial and had put on ten pounds in three weeks, was struggling with some new problems with the degenerative disc disease in my neck and lower back and was in desperate need of exercise. My pain level was at its highest level in years and I was frustrated because I had been walking most days before the winter came.

But when the cold weather hit, my RSD pain just skyrocketed and going outside to walk for 30 minutes was the furthest thing from my mind. I let myself get out of the habit; but as a Doctor friend of mine once told me, "For every day of inactivity it takes seven days to recover". It was easier, for my pain, to do nothing than to push myself and figure out a way to exercise. Or so I thought. Starting back up again was much more difficult than I thought. But I digress.

Now understand, it isn't easy. In fact as most of you know it hurts like you know what. Every step brings more pain but you have to try and walk normally because if you favor your back or one leg you end up in more pain the next day. I also get to think a lot while I walk. I think about the days, weeks, and months when I was confined to bed and/or a wheelchair. Years when I thought I would never walk again.

I think about the hundreds of sessions of physical therapy I have had over the years. I think about the times when all I wanted to do was simply walk. I think about having to learn how to walk again, a few steps at a time, and I walk. I think about my sister battling multiple sclerosis and still spending so much of her time helping people through American RSDHope, and I walk. I think of my Mom battling Fibromyalgia and Raynaud's and also being there for anyone who needs help through American RSDHope. I think of all of my friends out there battling RSD, especially the support group leaders who put themselves out there despite their pain, and I walk.

I know this may sound high and mighty. I know by writing this I will get a few emails from people who ask me who do I think I am? Why do I think I am better than the person next to me? I don't. Those who know me best, know this. I know the emails will come though because I have gotten them in the past. You would be amazed by some of the emails I, and other group leaders, have gotten in the past. But we know most of those who lash out do so because they are in pain and are angry at the world. Sometimes they are angry, sometime the comments are quite comical. Sometimes a little of both.

Fortunately we get many, many more positive letters that always seem to come at just the right time. These are from people who are fighting every day for awareness and for their very lives. These are amazing people and I am extremely thankful to have come into contact with them over the years. Their stories inspire us to continue our work. But again, I walk off on a tangeant.

I was walking over at the mall the other morning. As I was walking the second time around I was thinking how easy it would be to stop after this one and sit down. I was a little sore this morning because it was raining outside and the barometric pressure was below 30. But fortunately that thought didn't last long. Any time that I struggle when I am walking I have so many thoughts to spur me on as I discussed earlier.

And I walk on a little further.

On this particular morning I happened to be wearing one of our American RSDHope sweatshirts, our logo splashed across the front declaring for all to see the need for RSD AWARENESS! A woman in a wheelchair stopped me and said "Do you have RSD?" I said yes. She said "Oh my gosh, I never met anyone else with RSD!" I asked her if she had ever been helped by the American RSDHope organization and she said that she had and that they had sent information to her that she had shared with her family and friends; that it had really helped her explain to them what she was experiencing.

I said, "That is the organization that I am one of the Directors of. My name is Keith". She said, "Oh my gosh, Keith! I have emailed you!" and she reached up to hug me. She paused and gave me the "RSD look". You fellow RSDers know what I mean. That "can I hug you or will it hurt you to do so?" look, that only a fellow RSDer or loved one knows to give. I said absolutely, you can hug me

She asked what I was doing there so early and I explained. She told me something that really hit me. "I used to walk but it hurt too much so I stopped". She said about eight months later she ended up in the wheelchair and she hasn't been out of it since and now all she thinks about is walking. We talked for a while. I shared some of my story and hopefully it helped for her to hear that you can be in a wheelchair and still have hope of getting back out. When she left I continued my walking. One more reason in my head to push on those days when it is so hard to take one more step.

I realize not everyone can walk for exercise. But please, don't give up. Exercise in some form or another. Even if you can't get of the wheelchair there are exercises you can do. I have shared my story with many of you of how I went from bed to baby steps, from forcing myself to get up out of the chair or bed and walking ten steps, then twenty. First twice a day and then three and four times a day until I could get further and further. You get the idea.

I know not everyone can do this, I truly do. But for those of you who CAN, if at all possible, do whatever it takes, draw upon whatever reserves you have, to get yourself motivated to keep moving. It will NEVER be easy, but it does get easier. Just remember that you are never alone, there are so many fellow RSD patients out there. Talk with each other, support each other, be there for each other. No one can understand what we go through as well as each other.

Keith

4/06

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http://www.rsdhope.org/Showpage.asp?PAGE_ID=1&PGCT_ID=3862