[toepain2013]

Hey Gang,

It's been awhile since I've checked in. I wanted to touch base and let you know where I'm at.

I'm *extremely* happy to say that I've made considerable progress. While the pain certainly is still around, I'm doing leaps-and-bounds better. I'm also back to doing a lot of the things I stopped doing due to the pain.

I want to share my approach with you as to help each of you in your individual battles.

1. I think the single, biggest thing that has helped has been changes in my attitude / mental state. I stopped identifying the disease as the crippling, horrible thing that it *can* be. I stopped the negative thought processes and I stopped recognizing my limitations -- instead, I started to recognize what I still *can* do. I started instead focusing my energy on identifying the strengths in my character and life that remain. I know it sounds stupid, but I literally tell myself about once an hour the qualities that I like about myself. I look in the mirror and tell myself that I'm handsome, smart, charming and that I'm going to do great things in life, regardless of whether it involves pain or not! Also, if I walk long distances or do something that takes a lot of effort, instead of recognizing the pain and the fact that I used to be able to do it effortlessly, I focus on the accomplishment. I tell myself how awesome it is that I'm still doing ______, even with the pain. Recognize your successes and your brain will in turn focus less on the pain, thus reducing pain levels. I really and truly believe this.

2. Do things to help relieve / improve the pain. Take lots of baths, use calming lotions, rest more, work less, etc. Don't force yourself to be in pain, accept your new state and instead take more time to focus on yourself and making yourself feel better. This helps your brain deactivate the pain pathways that are constantly firing otherwise.

3. Exercise, exercise, exercise! While it involves pain, I find that exercise helps immensely. I now go to the gym while at lunch on my work-break. I had to explain to my boss that I'd be taking an hour and a half each day for a break, but he was totally understanding and it's helped SO much. I go do a light workout for 50 minutes, shower and then grab a bite to eat. The mid-day "pain cleanse" as I like to call it really helps me make it through the day.'

4. Stop avoiding things. If you want to do something, do it. For instance, I used to play TONS of soccer. It's one of my favorite things. Sure, it involves considerable pain now -- but I recently rejoined my soccer team and started playing again. I'm not nearly as good anymore, I have to stop playing sometimes due to the pain -- but just being out there and doing it has helped me realize that this disease can't stop me! I'm going to do what I want, and recognize limitations when I have to -- but it won't stop me from doing the things I want to do!

All in all I think the beneficial changes are more mental than anything else. I'm still in pain on a regular basis, but I'm focusing less on the pain and the limitations it inflicts. I'm therein trying to get my body to "forget" about the pain and stop viewing it as a noxious stimuli. I'm trying to change my brain from identifying the pain as, well, pain and instead disregard it as some simple miss-messaging that I don't need to worry about.

I hope this helps someone. Much love, peace and pain-free wishes to everyone.

Love.
Toe

[Vrae]

Originally Posted by toepain2013

I think the single, biggest thing that has helped has been changes in my attitude / mental state.

This is fantastic! Go you!! I couldn’t agree more. Attitude and your state of mind is everything.

We must keep moving and pushing through the pain as much as we can. The alternative is a deep dark place filled with sorrow, despair and a longing for what was or what could have / should have been. I have had this for a while now, and when I was first diagnosed, after I learned how to walk again I started a new business venture. I would lug 60 lbs of gear around for 12 hours a day. Not every day, but I did do it. I worked tirelessly honing my new craft. Oh and I had a husband, five children and a house to keep up with.

I was also a LOT younger and my disease was not as advanced as it is now. I cannot do all of those things now at the pace I did then. But I still push myself to keep moving. For instance, we just went camping. Wow.. it’s been a couple of years and it was a LOT of work and pain, but I kept moving. The payoff was being among the trees next to water with my husband and sharing the experience with my daughter (11 y/o). There was a time or two when I thought.. what the hell was I thinking? But trust me I was camping girl style with my blow up bed and heater and all. Cold up in the mountains still.

OH! And we saw a MOOSE! I will attach a couple pics. Hard to appreciate just how large that animal is until it is 20’ from you!! He came through our camp twice!

My point is.. I’m living, or at least I’m trying to. It’s not easy. At times it hurts like hell, but it was going to hurt anyway… right?

Anyway.. My point is I couldn’t agree with you more Toe! So very well put! Thank you for sharing and so glad to hear of your improvement!!

Ps.. Cache La Poudre River is running too full from snow melt and rain

[Phaedra]

So glad to hear you are learning to live again. It gives me hope. I feel very happy for you. I hope that you will accomplish all that you set out to.

[zookester]

Love the positive attitude!! Thanks for sharing your tips and progress.

Soccer.. simply amazing!

[eevo61]

So happy for you,rest you are so right,relax,rest,key words,the attitude changeling is the best medicine sometimes,many I should say many times.
When we live hating were we at,were we work,what we have,is so painful go day by day. We already have pain, acceptance makes your following steps more easy to walk,always hard to live this way when you are on pain,and obviously have a positive attitude is almost impossible,but acceptance make life easier,for real.
I'm happy for you and happy that you try so hard to move on,wish you well and the best,we are all here waiting for any one to tell their story,good or bad,we are brothers and sisters , a family,let us know how you doing,Jesika

[visioniosiv]

Go Toe





Also,

[Lottie]

Toepain, thanks for this great post!! So happy for you that you have improved and you are doing such a great job of taking good care of yourself. Well done. Everything you say is exactly right. It should be the mission of each of us.
Soccer? Wow. Impressive. I was an amateur tap dancer before CRPS struck, taking weekly lessons, occasionally performing on stage. I was doing it for the fun of it. It took many months before I could get my shoes back on. I had to get my mind past the pain, past the self-conscious feeling of not being any good anymore, sometimes I felt like an idiot for even trying to tap again. BUT, now its been 2 1/2 years and I dance when I feel up to it, sit it out when its not a good day for dancing. I have to remind myself not to make a big deal of sitting out and give myself lots of credit for when I CAN dance.
One of the hardest things is drawing that strength from within. I do not get it from those around me. People around me are too darned worried about their own discomfort they feel when they see how I have changed, so nobody says anything to me. I hate that part.

[Burnbabyburn]

Toe

Congratulations and way to go. Yes attitude is everything really. Over the years I have done a lot of what you have done, and yes it does help. It's not easy but changing the mind frame around it is huge.

I am happy for you, and nice to meet you, I hope you continue to have progress
:-)

[AZ-Di]

Big thanks to you toe for this inspirational post! It's so easy to
go down the negative "rabbit hole" with this disease & it has it's own time
frame with each of us individually. Never the less, you've shown us a positive path that is possible.

[Russell]

Hey Toe,
Way to go!!!
Congrates on your progress...