Fighting Disability (Part One)

Fighting Disability
Part One: The Personal

I decided over a few months ago that I would not fight my RSD. I decided that I would not make my body a war ground. I would not become angry every day when my body doesn’t quite work in the way it used to. I decided that I would not hold out hope for remission.

Instead, I decided that I would work with my body. I would stop when it told me to stop. I would negotiate a few days of rest so I could go out and have a blast with friends. I won’t lie; it makes it difficult to hang out with more than one friend or person during weekends, especially as I have school four days a week, one day for cooking and grocery shopping, a day of rest, and a day to hang out. Supposedly, homework is in there somewhere.

Even though I decided that I wouldn’t fight it, I still did. No matter how well-prepared I am for the day, no matter how low of a pain level I begin the day with, there can always be a wrench thrown in my plan.

For example, I live in a wonderfully snowy area of New York and I go to a college in which they think students should not only show up in blizzards but they should also have to trudge through the snow and skate on ice just to get to class for days afterwards. The snow removal is practically non-existent. The last snowstorm we had, they decided to let about two to four inches of snow covering a sheet of ice melt during the week.

Having had trouble getting my wheelchair through snow before (I came close to getting frostbite one day for being stuck outside so long) I had to decide whether it would be better to risk getting my wheelchair stuck in snow or if it would be better to risk falling on ice while using my cane (crutches sound better, but they slip more once they’re indoors).

Days like those are when I’m fighting my RSD. I have no choice but to keep trying to go to class and making it through the sharp stabbing pain that I get when I try to walk long distances. And every day that I use a cane in a large area, I’m either forced to do it because of inaccessible entrances or I feel like I have to do it to make people around me comfortable.

And here’s the thing that I’ve learned about RSD. Doctors will try to tell you otherwise because they don’t want to admit that they have no clue about how to fix you. The thing about RSD is that the more you walk (if it’s in your lower body), the more it hurts, the more frustrating and painful your day becomes. The less you walk, the less it hurts and it makes your day much better.

The ‘Use It or Lose It’ scenario is not as extreme as people would like to make it out to be. Of course I will continue walking around so I can retain the little range of motion and strength that I do have. But the muscles aren’t coming back and I’m not going to try to force them to get back. Yes, my leg has atrophied. I’m okay with that. I’m not okay with trying to force it to do things that it just can’t do. I didn’t stop going to physical therapy because I gave up. I stopped going because there were no more results. I did try to fight my RSD in physical therapy. It was one of the most aggravating and depressing things ever.

By the seventh and last month I finally made it to what most PT patients make it to in their third day or third week. I was watching newbies come and go. I watched a thirty-year-old man come to PT around the same time I did and leave before me. He had both legs basically smashed in a motorcycle accident and walked far better than I could when he left. During this time, the PTs had me ‘keep walking properly,’ even though walking properly was far more painful than walking improperly. I never was able to walk properly or without a cane.

But it was the fight that bothered me the most, my therapists insisting, ‘You’ll get better! You’ll get better soon! You’re still feeling the same amount of pain??’ It was the same thing three times a week and I would leave and come back in a few days back at square one. When they finally let me go saying that there was no improvement and they hoped I’d get better, I wasn’t happy. I was upset. I felt that I had worked so hard, fought so hard, that I should’ve had more of an improvement. I was supposed to be like House, dammit.

After a few weeks of sleeping in as I didn’t have class until the afternoon and realizing that I had a bit more energy to go to class, I started to realize that leaving therapy was actually quite nice. No more fighting, no more hassle, no more extra pain for what wouldn’t even be the tiniest result. Around this time, was when I realized I didn’t have to fight my RSD. I had said that I didn’t want to, but now, I know I don’t have to fight it. Well, except for the days I need to get into inaccessible buildings.

I mentioned a few posts back, in “You Know What? I Do Love It” that I loved my wheelchair and that I was thinking of getting a better one. I’ve been working the last few months on trying to get a new chair. I had some fights with insurance companies and wheelchair suppliers who kindly told me that as I walked a couple feet into the store that I didn’t need one. I’m privileged enough to be able to have a payment plan and lucky enough to have a wonderful mother who’s loaning me the money to outright buy a really nice chair.

After a wonderful demo last week with a very understanding and amazing sales rep, I realized with absolute certainty how much this new chair will change my life. It fits me perfectly, it’s only about eleven or twelve pounds, it disassembles quickly, and it’s easy to move and maneuver. The chair that I have now is more like twenty-five pounds, is too big for me, and is not easy to move and maneuver, so when I use the chair I trade fighting the RSD for fighting the chair, trying to make it fit through things it doesn’t fit and go over bumps that it would just rather get stuck in.

With this new chair, a Tsunami by Ki Mobility, I can completely stop fighting my RSD. This chair can get me anywhere I need to go, excepting stairs, with complete ease and a smoothness that I’ve never felt while using any wheelchair before. The treaded tires that I’m getting means that snow might not stop me like I did, and even if it slows me down, I have much less weight to try to force through the snow.

With this assistive equipment I can accept the chronic pain, the hypersensitivity, the allodynia, and the muscle tremors and spasms. I can stop fighting the RSD and fully live my life again. I refuse to fight my RSD. I much prefer negotiating in this instance.

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4 Responses to Fighting Disability (Part One)

  1. SudsySoap2006 says:

    Another amazing entry my friend. I can’t wait to see you zooming around campus in that new wheelchair of yours. I still say you need to take care of yourself first and foremost. Don’t let what other people think and say get you down and if it does you know who to call. 😉 On top of all this I have to say I’m proud of you for coming to terms with everything and still finding the strength to take on life. Way to Go! *e-hugs* Sudsy

  2. 8bsxjB63zKB says:

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  3. gary says:

    i was told i have rsd, after a slip and fall on black ice.i have had two operations on my shoulder, all the time in pain so bad i could not stand it all the time the drs would put in their reports pain is way ou of proportion for the injury. well after a year and a half and several drs ant physicxal theripist they all have decided that it is rsd. I am a self employed auto mecahnic and own my own shop. I am om medications and still get very angry because i an not able to do repairs i used to because it has spread from my shoulder down my arm into my hand. I sleep a total of 3 maybe 4 hrs a night.i am looking for any help i can get to deal with this i do not want to lose my auyo repair shop and very loyal customers that i have had for many years, but it is taking a toll on, me, I also have a very understanding wife of 31 years and it is getting to her can any one help at all

    • sashasmithy says:

      Hi Gary. Can I ask what kind of physical therapy you did? Sometimes if you don’t have a therapist who knows what they should be doing in regards to rsd then they can often hinder the process (my therapists started using ice with me until I learned that that is a big no-no). Some people find relief with spinal cord stimulators. Some have success with nerve blocks, though the longer you have rsd without a nerve block, the less likely a block will work. Depending on where you live, there has been success with ketamine (some places refuse to even consider the idea). A lot of times, (in my experience anyway) is that you have to learn how to pace yourself, learn how much you can work through the pain before it’s too much. Personally, I think PT should teach that type of stuff, but they don’t as much as they should. I also recommend going to the FightingRSD blog. It’s a terrific site filled with people with RSD and they often have lovely tricks and advice.

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