Fun and amazing things done while having CRPS
 

Hello All,

It is a clear and beautiful day here in Texas and the sunshine is making me want to celebrate after the recent floods. :)

I know we all need to vent and am glad we have this place for support during rough times, cuz I need it too! But in the interest of sharing some positives I am starting a new thread about finding joy and beauty.

Before I had to deal with my injury and this illness I was really active and game for anything, strenuous hikes, biking long distance, walking all day. The change was huge. But I am finding new ways to be and new things to do.

Here is a list of neat things I have done since having CRPS. Some of these were done while being non-weightbearing which went on for about a year. Believe me, I know there is a way to keep parts of life when challenged.

Kayaking - a favorite, even on crutches (just gotta get in there) and in really cool conditions...in light rain watching raindrops bounce on the surface, surrounded by hundreds of floating blossoms that fell from overhead trees, in water pink from the sunset and in moonlight!

Biking short distance - after crutches, duh.
Gone to movies and IMAX documentaries
Traveled by air - with and without every possible assistive device, wheelchair, walker and crutches
Went to Six Flags Theme Park - rented a scooter and enjoyed watching my family
Walked on a beach and lolled like a sea mammal in gentle waves - my hurt foot liked this!
Made new friends
Fed a chipmunk who climbed on my lap when all I did was sit still a lot.

Went to....
an airshow
an outdoor art show - walker
a natural history museum - with breaks
a play
an aquarium - with walker
art galleries
a cruise on a tall ship (schooner) while on one crutch still
snorkeling - this one's great for the foot injured
played with hermit crabs in a tide pool
Cirque du Soleil
kept going to Italian
started yoga/pilates (I modify poses as needed)
started piano lessons
tried new therapies - hypnosis and EMDR
built and painted a kit loft bed for my son - most of the work could be done sitting, I got help for the rest...

That's a lot of great stuff! I should pay attention to what I can still do more often. I am grateful to friends and family for support that helped make these things possible. Yes, it has required planning and pacing and modifications and adjustment. I plan on having higher pain sometimes because of choosing activities that challenge me. I have to have a lot of downtime and may always miss those big hikes. But there is still a lot out there and I am so much better when I get to do something wonderful sometimes.

Please add to the list. We all need inspiration! On the Peripheral neuropathy forum someone wrote that they went to Rome and did okay! Wouldn't that be amazing!

Okay, I am going out in the sun now....Sending out thoughts of healing and restoration, :grouphug:

I continue to "think I can..."
 

A Warm Hello to Littlepaw and to All,

Thanks for this thread, Littlepaw. I find it helpful to remember the things I can do despite CRPS. Like you, I also sometimes decide to make a trade-off of increased pain in exchange for an activity.

I am in the midst of a very challenging flare right now, so I find this approach helpful in keeping me hopeful and sane. ;)

I have traveled, by air, across the country to major conventions. (I, too, needed assistance; however, I made it and had so much fun! I have met long-term friends in this way, as well. We travel to visit one another.)

I schedule as many live concerts and as much live theatre as possible. I pre-buy tickets. If, ultimately, I cannot go, I either gift the tickets or sell them locally.

I attend local social events -- local farmers markets, local community holiday celebrations, some local political events, etc.

I canoe as often as possible. I have taken that up again recently, after years of thinking I could no longer participate in this. I found modifications which have helped me to do it anyway.

I visit and stay with friends, simply to share time together, and as a change of scenery.

I visit the mountains, often. I love to see the wildlife and enjoy the energy of the mountains so very much.

I spend time with friends as often as possible.

I also take live courses of interest, online, especially in the winter months.

I love to cook. I enjoy sharing this with friends and with neighbors.

I know there is more... ;)

:hug:
DejaVu

P.S. While I cannot do these activities at all times, I do them as often as I can manage. During a flare, I am much more limited.

Thanks Littlepaw for this :D

Here are some fun things and some small accomplishments I've done/had over the last 10+ years living with CRPS (my hands/arms are the affected areas):

Went hiking with my doggie (doggies) as much as humanly possible and tried to hike any new trail we found. I saw a mountain lion, bighorn sheep and a moose for the first time.
Started taking pictures again.
Went swimming in the reservoir (the enjoyment was worth the aftermath!)
Stayed at a yurt several times at over 9,000 feet elevation in the mountains.
Watched several meteor showers and witnessed many shooting stars.
Started dancing (at home) again :)
Played darts
Went bowling (that was very short lived and will not be repeated, but still!)
Played my husband's guitar, bass and keyboard, paid for that, but, it was fun and hubby was proud :cool:
Went to many great concerts and shows, several different museums and different planetariums.
Played fantasy football and won :)
Visited my family and held my baby nieces and nephews for the first time (love overcame the pain).
Reconnected with many old friends.
Started attending functions and parties again.
Read 1000's of books both fiction and non fiction (hardbacks are best).
Learned how to use Dragon (voice recognition software).
Worked with vocational rehabilitation and went back to school for a different degree (unfortunately it didn't work out, but I learned a ton!)
Took on a volunteer position
Worked shortly with developmentally disabled teenagers.
Planted a small flower and vegetable garden, also planted trees with much assistance.
Started taking my groceries myself to my car, most of the time.
As far as different treatments, I started going to acupuncture on a regular basis, completely changed my diet cutting out most grains and eating TONS of veggies, started a new vitamin/supplement regime, and learned how to breathe correctly (all helped tremendously).

Take care everyone :grouphug:

Thanks for this thread and the posts! It gives hope....and it is fun to hear others and their good times.... As my CRPS spreads it is too hard to do many things but knowing others can brings a joy that only us who suffer can relate.....
It makes the saying I think I can more attainable and makes us more creative as we think of ways to adapt them to our current possition.
KUDOS:grouphug:

My battle with CRPS is with both of my legs but I have found lots of things I can do without my legs.

I taught myself how to crochet and now I'm pretty good. Everyone I have made blankets and scarves for often request me to make other things.

I also taught myself how to knit. I was intimidated at first but I thought what else do I have lose.

Also I have rediscovered my love for coloring!

All 3 of these have helped me in different ways. They help keep me focused on them instead of my pain, they keep my brain from turning into mush, but I was most surprised at how proud they made me. CRPS has taken a lot from me both physically and emotionally but being able to look at things and think I made that feel really good.

I look forward to seeing what everyone has done!

It does give hope to read about other CRPSers who are able to do more than sit suffering at home. I am in awe, only because after an hour of Hatha yoga I barely make it home. I am too tired to take my clothes off and I generally sleep from 4pm to dawn the next day.

NurseKris I dragged out my colored pencils and an instruction book so I could start drawing again, or maybe try my hand at Zentangle.

I read in one sitting, "The Girl in the Spider's Nest."

[QUOTE=BioBased;1182627]It does give hope to read about other CRPSers who are able to do more than sit suffering at home. I am in awe, only because after an hour of Hatha yoga I barely make it home. I am too tired to take my clothes off and I generally sleep from 4pm to dawn the next day.

NurseKris I dragged out my colored pencils and an instruction book so I could start drawing again, or maybe try my hand at Zentangle.

I read in one sitting, "The Girl in the Spider's Nest."[/QUO

BioBased, I'm not sure how long you've been living with CRPS, but I've found it is best (for me at least) to focus on my abilities (however small they may be) verses my "disabilities" or things I can no longer do, or can only do with causing myself harm or great pain. Focusing on what I can do gives me strength, focusing on what I can no longer do makes me depressed. Going to yoga is a huge accomplishment, especially if you are doing this on a regular basis. You should be proud of yourself for this :) One little step at a time. Some days are better than others for I'm sure majority of us here. :hug:

Congrats!
 

Congrats! :D
Isn't yoga quite strenuous?
I'd love to be able to do an hour of yoga. I don't have that kind of muscle control, nor the strength. I am working on it though. ;)

:hug:
DejaVu

Deja,

This is not the yoga I could do before. It is mostly gentle poses on the floor. More meditative yoga. I am thrilled to be able to manage this.

What I am trying to do now is balance on my tiny elliptical that has no upper body support. I lasted two terrifying minutes, but I am not discouraged. My other new thing is walking on the grout lines in my kitchen to work on my listing, wobbly gait.

Sorry it has taken me so long to respond but as I lay here in bed in pain...knowing I need to get up in 30 mins to get ready for work...I thought I would jump on in with my list.

1. Number one on my list has to be having a baby...what an amazing experience all that was/is. Raising a baby comes with it's share of difficulties with this condition but my gorgeous, sweet baby girl just fills me with so much joy that even when I'm in a bad place she gives me a reason to keep going. Such a little miracle that girl...can't believe it's been a year since I had her.

2. Number 2 on the list was being pregnant. Oh my goodness...I think I was the pregnant lady all other pregnant women hate...lol...so unbelievably happy throughout the entire pregnancy despite various bumps along the way. It was so amazing...I can't even put into words how incredible it felt carrying my little girl in my belly...being happy like that is such an incredible, drug free high.

3. I go fishing several times a year with my boyfriend and we have so much fun. I can't do as much as I used to but even just sitting in the boat and enjoying the weather and nature is wonderful.

4. Have gone to Disney World several times and Disneyland a couple too. I love Disney...it is my happy place. I use a walker and they are so handicapped friendly...it's so easy to tour the parks and have a great time. I even got to go when I was pregnant and had a special maternity photo shoot in Epcot before the park opened...so fun!

5. Gardening...I discovered gardening after my RSD went full body and I so enjoy sitting in the yard looking at the beautiful flowers...knowing I planted them. Creating a beautiful sanctuary in our yard has made it a safe, special place for me to go even when I don't feel up for going "out"...and shopping for plants is also loads of fun!

I know there are other things but those are the big things I am most proud of and that are the most important to me.