We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.
Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.
If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.
Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.
If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!
Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.
I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain, depression and mindset also.
Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.
Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.
While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.
Be good to yourselves!
Don’t stop living because it hurts, survive the pain and go on.
~Twinkle VanFleet
RSD Advisory- Where Chronic Pain & Depression Collide 
It’s Blogs & comments like these that push me further downhill! 3 Specialists later saying they can do no more.. Crippled I’m chair 24/7 365 days year after another 2wk stay in hospital on Ketamine with hope of Rehab to be told to severe… I’ve pushed & pushed every day of my CRPS life like nobody could believe the excrutiating pain with the severe complications I have SO DON’T TELL ME THIS GARBAGE!!!
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Vicki?
I also said if someone can’t, don’t. While you are screaming at me you are judging me and putting me into a category of me being better off than you. And you don’t know that. I wrote about living! That’s all, living!
I wish you well.
~Twinkle
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My capitals are not screaming, but firmly stating my opinion therefore I apologise for this.
‘Your comment of do not stop living because of the pain’
I respect you are speaking to many people with CRPS/RSD supporting them to keep living with the pain & I also have ran a support group as this is greatly needed!
I get upset that there is wide variety of stages of CRPS/RSD yet sadly support is not there for those who have reached very very severe & they are looked upon as failures or have not tried hard enough of in fear of as nobody suffering this illness wants to get that severe….
All the best with your awareness!
You won’t hear from me again.
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I don’t think anyone is a failure, Vicki! I have never looked upon anyone as a failure either. I never said anyone hadn’t tried hard enough.I never implied it! “Do not stop living because of the pain” comes from the fact that I have and had for many years and if I can help someone not stop living as a result of it. It is worth it to me.
I am sorry if I offended you! It was never my intention.
I do wish you pain eased days and nights,
~Twinkle
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If someone would have told me back then, over 12 years ago, “This doesn’t have to be the rest of your life” Instead of “It is the rest of your life, I wouldn’t have lost so much. I lost my 30’s and I’m half way into my 40’s, children I will never raise again, they are raised, memories that were never made, laughter that was never shared, etc and so forth.
No one ever said it would be easy, but I wish someone would have told me it might be worth it.
This is why one size doesn’t fit all and never will!
That damage is done!
Respectfully,
~Twinkle
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I suffer from several invisible chronic illnesses and I’m really struggling right now. I found your post to be rather inspiring. I wish you the best on your journey.
Peace,
Tammy
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Tammy,
Thank you!
I also wish you the very best on your journey. Please feel welcome to keep in touch.
Wishing you pain eased days and nights,
Always be as well as you can be,
~Twinkle
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Thank you for sharing! Everything you said was very true. I choose to avoid pills. Doesn’t mean I’m ok. I choose to self manage pain as best I can. I’m finally able to give myself a break when I don’t finish my list!
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Susan,
You are most welcome and thank you also.
I have another friend who also chooses not to take medication, she did for several years. She found a distraction for her pain and has a radio show on blog talk. It doesn’t mean she’s well at all, it means she’s doing something else to adapt and cope with the pain.
Some people think because others don’t take meds, like you, that you must not hurt as bad as they do. I find that to not be fair at all. It’s very judgmental and full of assumptions. It’s no more fair to judge the person who has to take medication to cope than it is to judge those who don’t.
I’m so glad you are able to give yourself a break when you don’t finish your list. Took me a long time to tell myself it’s okay not finish it. My tasks can be anything from attempting to wear a sock for 5-10 minutes for ongoing desensitization a couple of times a week or making a meal for my husband son,, being sure I make calls, answer email etc.
For years off and on I felt as though I was a failure, or that my family and children thought I was. They never did. It was me and my own mind.
Thank you so much again!
Please also feel welcome to keep in touch!
Sending a hug your way and wishing you pain eased days and nights,
~Twinkle
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I became symptomatic on September 1, 2003! My world has been turned upside down and inside out, in a manner of speaking. When I am up to it, I try to bring about awareness of this syndrome through writing, and compiling info found on the internet. Presently, I have a web page at scoop.it.com. http://www.scoop.it/t/complex-regional-pain-syndrome. I wish you the very best. Take care.
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I commented using my WordPress.com account. Unfortunately, I am physically unable to keep my blog current at this time, due to the RSD progressing.
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Thank you for this inspiring post. I believe we can all live in different ways to make out lives worthwhile. Not everyone can run a marathon but could play a marathon game of chess, So Im sorry that this post has caused conflict, but sometimes people have had bad days or years and are just frustrated. I personally feel that I have been better off by staying active and having projects. I grow my own veggies, with some help. I walk daily and do my physio. Im also about to start riding my horses as part of my physio as it is low impact excersise. My biggest feat is returning to work in my mums cafe. Only 1 hour a morning and sometimes I dont do anything but it gets me out of bed and creates structure in my day. Some days I struggle but I have learnt that if it hurts just stop. My CRPS was caused by an extensive burn injury and started in my hand. It then spread to my arm, my entire left side and now my right leg, arm and hip. But I soldier on and do my best. A little inspiration is a good thing. Thankyou very much.
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Reblogged this on Attack of the CRaPS and commented:
An inspiring post for living with CRPS
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Dear Paulette
Thank you for all you do to help bring awareness despite your pain. I am grateful to you. I have saved your page and would love to share it with others with your permission.
Wishing you pain eased days and nights,
~Twinkle
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Hello Twinkle,
Please feel free to share links to my web pages. I appreciate you sharing the information. After all, it’s all about helping those who are newly diagnosed, and creating awareness of this life changing syndrome! May the Lord bless you abundantly, with healing and restoration.
Paulette
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Dear Sarah
Thank you also!
I agree that the continued pain and struggle causes people to have bad days, weeks and years of frustration. I truly understand this.
This is such a hard disease to try to survive. I’m in a constant struggle myself. Its been so bad I thought about ways out, but really I just want to live. Most of us do, we just can’t handle the constant, unrelenting pain, debilitation and progression. The chronic pain and depression becomes a vicious cycle.
I would love to share your blog also. The more awareness that gets out, the better for all of us.
Thank you so very much again
Wishing you pain eased days and nights,
~Twinkle
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So true. I have also had moments of contemplating the point of continuing my life with CRPS. Its a hard disease to live with. but Its also bought out the stubbornness in me and I wont be beaten. The point I was trying to make was that some people are not in a head space to be inspired by your post so please dont take it personally when someone reacts badly. Its just not their time to be inspired. Focus on those who you do effect in a positive way. 🙂 I hope you didnt mind me sharing your post. It was worth sharing. Im new to the antiquate of blogging so I probably should have asked first. Thank you anyway. and Im happy for anyone to share my posts. Its all about the awareness isnt it.
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Reblogged this on Life as a CRPS fighter and commented:
i love this blog ❤ *inspiring*
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A very inspiring post, as always.
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Jane,
Thank you so very much! Merry Christmas to you! Sending love and hugs even at a distance. x
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I have been living with RSD since the early 70’s, I do feel your frustration and bitterness but Please don’t ever give up. I am able to cope with some medication as well as the power within my own mind. You have this capability as well to train your mind to cut the pain levels a lot. It took me a few years to do it but I did or I would have probably done something drastic. I still have a good life left in me as I will never quit fighting this and you can do it also. Have faith in yourself. You are stronger then you realize and by a very long margin. WE all are and sometimes just don’t know it. Barrie
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Barrie,
I recall how long you’ve lived with RSD. Rounding off 40 years, but really longer than that for you. I do live off the power of the mind. I have assistance in SCS and a tiny bit of pain med, but the rest is by my will to do so. We never know how long our will will last, but we have to use all that we can in strength and faith. I’m just not one to to feel sorry for myself and blame others over and over again. Oh sure I’ve been there, we all have. It’s the human emotion to do so, but I won’t stay on it because I make or break me. No one has that control or power over me, but the one who has it and me.
x
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