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 06-09-2010, 07:39 AM #1
RNcrps2 RNcrps2 is offline
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Default help-what do you do to fill your time?

So what do you do to occupy your time? I have been so sad and depressed lately. I see a psych and my family is very supportive but my therapist said i need to find some type of craft or hobbie to get my mind off of pain. With having RSD in hands and feet i find it difficult to do anything repetitive or doing anything for any length of time. Difficulty concentrating, distracted and tired. What do you do to fill your time, to feel productive? What simple activities do you do to make you feel good? I use to love exercise, outdoors, reading, fashion. momof4
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Old 06-09-2010, 08:13 AM #2
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Heart Hang in there..

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Originally Posted by RNcrps2 View Post
So what do you do to occupy your time? I have been so sad and depressed lately. I see a psych and my family is very supportive but my therapist said i need to find some type of craft or hobbie to get my mind off of pain. With having RSD in hands and feet i find it difficult to do anything repetitive or doing anything for any length of time. Difficulty concentrating, distracted and tired. What do you do to fill your time, to feel productive? What simple activities do you do to make you feel good? I use to love exercise, outdoors, reading, fashion. momof4

Momof4...

I hear you loud and clear... we all experience the lost whole in our hearts due to the required change of activity demanded by our RSD..Just this week I had to be terminated from my work of 25 years AND just this morning, 2o minutes ago a dear friend of mine packed up my office and personal belongings...

It is good that you do enjoy the outdoors and reading and such.. I would suggest..change it up...concentrate on those things which you enjoy..it will lighten your heart and when you are ready..volunteer..Only when you are ready but you/we must discover an alternative place to fill the void and make our hearts happy and justified...This way you will see people and taylor the activity for your pain as not to push yourself too hard. I must say the change in my pace is surely a positive but today and lately it has not done my heart too much good but I know in time we must all find our way. Myself since being out of my work I have had more time to spend and take care of my sweet Mom, she is 80 and has demenisha... also manage my disability paperwork, which is a full time job..The important thing is to surround yourself with the loves in your life and fill your days with the simple enjoyable things you enjoy doing..It is an adjustment..and you have us..no simple answers but fill your time with happy things you enjoy as RSD can make us sad and we have to counter act that..

Hugz, Kathy
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Old 06-09-2010, 10:12 AM #3
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Default Stupidity is my #1 default....

I run straight to whatever humor I can find. I have pre-recorded episodes of my favorite commedian's stand-up monologues.......usually it works like medicine.
But realistically, I understand that humor can not be laughed at all the time and that sometimes it just isn't appropriate.
In some cases, I just go curl up in a ball and let the tears go. It's a good release.
There is a healthy balance between the two....

Try to set some small goal to achieve in a day.......even something very simple.....go thru some old clothes you don't wear, packem up to give away.
or.....do something to change the appearance of part of your house, even just simply dusting off a cluttered table (plenty of that in my house ) and putting up a couple of new photos on the wall....
Just little changes, so that you can at least sit back and see that you've accomplished something. Buy a new scented candle and send a card to a friend just to say 'hi'. I enjoy going thru the funny card sections.....one time I got on such a roll, I ended up with about 30 silly cards..... how embarrassing was that while at the check-out counter with 10 people standing in line behind me

And, of course, being on here at NT is probably the greatest medicine of all! Look thru the threads and if you see one that doesn't have very many responses, just send a friendly post to someone. Knowing you've made someone else smile will reflect on you like a mirror and you just can't HELP but feel good about that.

I guess what I'm trying to say is, it's the little things that count the most.

And it's ok for those times when none of the above seem feasable. We're human. Actually, I am going to find out more about 'Biofeedback' and see if that would be something I'd benefit from. Because, I know that a person can not 'hide' behind humor all the time...sometimes we do have to face ourselves head-on.

We're all in this together.
I constantly remind myself of that....
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Old 06-09-2010, 04:57 PM #4
Lisa in Ohio Lisa in Ohio is offline
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Hi Mom, I hear you about finding something to do that makes me feel worthwhile. I eventually ended up taking just a few college courses ( some on line) and am now pretty close to getting my degree, despite my horrible spelling. I have found the instructors to be very understanding about my illness for the most part, and they have made accomadations for me so that I was able to complete the class. I have also gotten more involved with my church. I am now taking the time to go through cupboards and closets and getting rid of a lot of stuff so that my kids will not have to do it. I read, garden a very little bit each day, and spoil my two pekingese dogs. I hope you find something that you enjoy soon, even if it just enjoying the summer weather and your family. It really is a very hard adjustment to make, and I wish you well. Lisa
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Old 06-10-2010, 08:07 AM #5
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Default Open a new window!

For those who join the ranks of being disabled and battling a diseased/damaged body, the life we lived yesterday is now nothing more than fond memories and a little emotional pain as we compare everything we'll never enjoy, but not all is lost so long we we're willing to do whatever it takes.

For the first 20 years of our marriage we lived cable free and with the biggest TV a whopping 19 inch model that didn't even have a remote control. Why watch life when you can live it. But now things couldn't be different as I reside within a body that reminds me hourly about it's rather extensive list of limitations. Guess I'll have to change what I do, and I have.

For 2 1/2 years I've had the greatest joy working with SHIP, a nationwide Medicare help association. 90% of it can be done over the phone while seated at the computer. On rare occasions I do meet with clients in person. Look up your state chapter and get involved. With Medicare becoming even more complicated each passing year, the need could never be greater and the satisfaction of helping people with the things that matter most in their lives (money and health) make this the hardest job you'll never make a dime for while you go crazy - yet loving almost every moment of it. It's darn hard and not for the faint hearted, but nothing that really accomplishes anything worthwhile is. The perfect volunteer work for the severely and less disabled category.

Since I live in an area where if it' not deep fried, why eat it area of the country, I've finally learned how to really cook. Thanks to Martha S., Julia Childs, and some other really top notch chiefs, they've helped me learn everything from a creme brulee that hurts it tastes so good and the list just keeps growing. It's not a cheap hobby as I learned the right tools are worth their weight in gold, but as I've shared one lovely meal after another with great friends who can't do enough in our little world, I finally have a real way of showing how very appreciative I am. When would you like to come over?

Next I'd like to get into radio controlled airplanes. Since I already have a handicap van, I can haul around my wings to the world and yet the price has dropped like a rock this past year making this new hobby more affordable than ever.

The best thing I've been able to do is learn. Thanks to great TV shows where we can learn history and the latest tech amazements, I've now worked my brain harder than I have in years.

Thanks to these great little boxes we're sitting in front of, we have the worlds biggest library so even though our world might decrease in size, our minds can expand exponentially. There's never been a better time to be handicapped and there's not a day I'm not thankful for the fact that we do have so many opportunities people in our same shoes 30 years ago would never have dreamed possible. Now we just have to open a new window.

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Originally Posted by RNcrps2 View Post
So what do you do to occupy your time? I have been so sad and depressed lately. I see a psych and my family is very supportive but my therapist said i need to find some type of craft or hobbie to get my mind off of pain. With having RSD in hands and feet i find it difficult to do anything repetitive or doing anything for any length of time. Difficulty concentrating, distracted and tired. What do you do to fill your time, to feel productive? What simple activities do you do to make you feel good? I use to love exercise, outdoors, reading, fashion. momof4
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Old 06-10-2010, 08:18 AM #6
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Default Hi RN

The volenteer work is a good thing. I volenteer at a vet's home and have a blast with them. I go out and do some exercise with them, most are in wheelchairs but we do a half hour each morning. Then we do coffee and donuts, then we work puzzles, play cards, whatever. Some of the nursing homes aren't this active though but they all need volenteers, also they have volenteers at hospitals, musems, and many other places.

I have gotten into facebook also, I have found so many friends and relatives on there and we reminense about the good ole days. You might enjoy doing that,

My Grandkids keep me busy. I'm involved in their school and activities they do. They insist I go to everything. If you have grandkids, or kids you might get more involved with them.

Reading is a good thing too. I am not a very good reader though, the book has to really keep my interest.

I have been watching older tv shows and movies on youtube also. That is fun. I can't afford to rent movies so I just pull them up on my computer and watch them.

Take some walks too, go to a gym and just do what you can, the public swimming pool in the heat of the day.

The ideals are out there, everyone has some to give you. I overdid it this week and had to leave the nursing home Tuesday in pain. At least with volenteering you can walk out without getting fired.

Just remember we have to sat a pace. I can't do it yet and pay for what I do.

I am glad you are on here too, we can occupy your mind sometimes but I do realize there are other things a person would like to do.

Feel better soon.

Ada
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Old 06-12-2010, 12:13 AM #7
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Talking helps me so I try to get out every day and talk to people. My mom needs some help with the house and is always good for a game of backgammon. I spend a lot of time "talking" on the net about my hobbies including studying the Great Pyramid builders. I spend as much time as possible working on anything even if it's just sitting down work. Keeping occupied is very helpful. There's always music or TV is I get desparate. Boredom is hard on me since it makes me think of my trouble.
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Old 06-12-2010, 08:59 PM #8
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I have CRPS in my left ankle, not in my hands so I am not sure if this will help you at all. I have really delved into cross stitching since it is one of the few things that I can do where I am able to really lose myself. I sprained my wrist early on when I fainted from the pain in my ankle and that made stitching painful...but I did it anyway because it still had a calming effect on me. I have not been able to read anything at all since this started for me last year and I have been very frustrated by that. I just cannot concentrate enough to sit and read...but I have started listening to audio books and have found that they work very well for me. And portable so that I can listen to them at any time and they also help to distract me from the pain (not a lot...but getting lost in a good story for even a few minutes is a real blessing sometimes). I really hope that you are able to find something that you are able to do that will occupy your time and help take your mind off of things. Hugs!

Catra
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Old 06-13-2010, 08:01 AM #9
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I can relate to this. For me when I try something new it is important to start low and gradually add more time. Otherwise I get frustrated an the pain gets too high. I am not sure if this you could do with your arms but I am thinking like for an hour to play a board game at a senior citizen place or even just talkto them which would not require a lot of movement. Right now where I live it is too hot but in nice weather sitting outside at a coffee place or book shop just people watching helps me feel less alone. Sometimes I go to the library too. Maybe make small goals to read even if it is a page or 2 and then take a break. When I started to walk I increased even by 2 min a week but after time it built up to a more solid amount. I am sorryyou have been depressed I can relate. I hope you are also reach out to people in real time who care.
Rrae I think in a few weeks i am going to start biofeedback. I did a few sessions a few years ago and it was very helpful
Lisa in Oh good for you and the courses. May I ask what kind of degree? That sounds interesting to me.
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Old 06-13-2010, 03:46 PM #10
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Hi Daniella, I will graduate with a degree in business management with human resource emphasis. Many of the "basic, required" course work can be done on-line, LSU has a great program. With these you can work at your own pace and have 9 months to complete a course and the price is very reasonable. You simply pay for the class that you are taking. I was able to do this while I was recovering form several orthopedic surgeries to put my arm back together. This has really given me a sense of accomplishment about myself. At this point I may e kidding myself that I will be able to return to the work force, but if I am ever able to, I will have a degree to back up my job experience.
I also think that this has helped keep my brain active, and even though I have trouble with my memory, perhaps it is not as bad as it could be.
Another silly thing that I do is to play hidden object games on my laptop computer. It helps keep the brain active as well.
I am no longer in any type of physical therapy, WC will not pay, and the therapists in this area have no experience in RSD. To keep my arm and hand from becoming too atrophied, I play the piano a little bit at a time. Sad to say, I will never be the pianist that I was before good old RSD, but I will not allow it to completely take my music away from me. I am weary of the fight, with pain, with WC for treatment, and with the day to day struggle. I rally wonder about my purpose here on Earth since my kids are grown and have made good lives for themselves. I guess I am just really down today. Blessings to all, Lisa
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