Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-07-2010, 03:15 AM #1
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default Feeling Good

It's been a while since my last post when I was just about to return to work at the beginning of February.

It was really hard going back to work since I am an assistant store manager at a big box retailer, which requires being on your feet for most of your 9 hour shift. When I first got back it was a real struggle to walk from the front of the building back to the office. I had to hold onto tables and fixtures as I walked and I found it very hard to catch my breath. My restrictions when I got back were to walk for only 15 minutes at a time max every hour or so and to be doing mostly sitting work. Well...there really isn't any sitting work besides doing schedules which my boss doesn't want to take away from the woman who does them.

I spoke to my boss about my committment to the job and the fact that I really wanted to just do my job, but that I needed her support to allow me to manage my areas in a different way than I used to because of my walking limitations. That led to some unpleasantness and a conference call for HR that was very nasty because they gave me my job description and asked if I could do the things on there. I said I could because my job is to oversee things, not to be doing them necessarily (although I had always done them in the past before my injury last July and being diagnosed with RSD in December). They said they didn't think so and that they would not support my creating a new way to manage my areas that did not fit in the company culture. I was ripped to shreds because I took a stand and said that I want to do my job (and by the way...even with my limitations I maintained the highest sales numbers in my areas in the district for the past 7 months and I was only off for the month of January). And I told them that it was not fair that they dictate HOW I accomplish my job as long as I did it with integrity and produced results.

But despite this, I pushed myself every day to do more and more. I challenged myself to walk for longer periods of time and to take less time in between the walking. I had to go to physical therapy (PT) 3 days a week and I was working 45-50 hours a week. Every day I do my PT exercises at home whether I have PT or not. The pain has not improved, but functionally I am walking better now and pushing through the pain.

This is the hardest thing that I have had to do in my life. I do not remember what it is like to NOT be in pain. Wearing a sock HURTS...cold air HURTS...wearing gym shoes is IMPOSSIBLE. I bought myself a pair of Mary Jane style shoes with a velcro strap that does not hit me where the pain is the worst and leaves the rest of the area open from any sort of pressure that I would get with a normal shoe. They have been a huge part of my ability to push through the pain. The hardest part every day is getting up. I don't sleep very much at all...but I find myself laying there for hours and hours not moving because the pain just sucks. I feel like every day I have to psych myself into getting up by saying/thinking to myself that I am 26 years old and I am NOT going to let this ruin me...I am not going to let myself be disabled because of the pain...I have too many things that I still want to do in my life to let this pain beat me. EVERY day I have to do this...sometimes several times a day.

But last week I went to the doctor and asked him to take me off work restrictions and I am down to one day of PT a week now until the end of the month and then I will be transitioned into a home program...which I am essentially doing anyway. I no longer have to hold onto things while I walk. I am now walking at an almost normal speed and my walking is getting so much better. I no longer have to concentrate every single step to make sure that I walk "normal". And it HURTS...but I am doing it.

Oh...and I have gained a bunch of weight from the medications that I am on...the Lyrica I think is the main culprit. So I had to buy a bunch of new clothes because my 00P pants are just a wee bit tight on me...lol! But I am looking at this in a positive light because I was actually able to buy some clothes from the misses department instead of juniors and that feels great even if I had to go up a couple sizes because of the weight gain. I now feel better in the clothes that I am wearing. But...guess what? The shopping...HURTS.

But yesterday I had a GREAT day and I felt GOOD. I worked in the shoe department rearranging the floor and making space for the new styles that just came in. I have always LOVED working in shoes since I used to be just a supervisor in the shoe department and I ran the best department in the region. I came home from work and told my boyfriend that I got to "play" in shoes...because that is how I think of it...I enjoy it THAT much. And I also got to put out new stock in kids and help the girl who was also putting out stock in the department make space and move things around. And it HURT...but mentally and emotionally I felt like ME...for the first time in a long time I was ME...doing something that I love, using my brain, and being normal. Everyone at work noticed the bounce in my step (not literally because I could never handle that with the pain...but just that extra energy in the way I was talking and the mood that I was in). And inside a part of me wanted to curl up in a corner and just cry from the pain...but a greater part of me was overjoyed at the feeling of being normal. Does this make sense to anyone?

I don't know if I will be able to do this day in and day out...every day will be and is a struggle. But the "high" from yesterday is still with me (admittedly I have the day off today and have been able to rest). I just felt like sharing this with people...because it is just so awesome. I hate the idea that I will have to live with this absolutely unbelievable pain for the rest of my life, but I have committed myself to this idea that I will not let it ruin my life. There are things that I used to do that will never be within my reach...and I will have to make some serious adjustments to do things that used to be so easy. I bring a heating pad to work with me every day and use it while I am on break at work...I never used to take breaks but now I HAVE to so that I can get some relief. I get some really nice shoes for Christmas that I don't think I will ever be able to wear because they put too much pressure on my ankle that I cannot stop the tears that come as soon as I put them on...and I have always been a jeans and gym shoes sort of girl.

I know that in reality I will have days where it is all too much and I'm not sure how I will cope with those. But TODAY...despite the unrelenting pain...I feel GOOD because I finally feel like ME...and that hasn't happened in so long that I forgot how good it could feel.
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"Thanks for this!" says:
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