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But the One Thing You Cannot Ever Do Is Quit

Published on October 6, 2021 under RSDS General Info

Written by Belinda Conarty for the RSDSA blog.

Woman with glasses in a blue dress with a flower in her hair sitting at a tableHow and when did you develop CRPS/RSD?

I had surgery on my ankle in July 2000 and the doctor nicked a nerve during surgery while repairing a torn ligament. When I did not heal after surgery, I was bounced from doctor to doctor. In October 2000 I got the proper treatment and diagnosis that changed my life forever. I was diagnosed with CRPS stage II and a week later I was told I had Fibromyalgia and Lupus. My world as I knew it was shattered. It started in my left leg and almost 21 years later I have full body CRPS.

What has daily life been like since your diagnosis?

Living with one illness is hard but facing three different ones every day is a challenge. My life has definitely changed. As strange as it might sound, being sick has actually made me better in some ways as I found an inner strength that I never knew was there. It is funny how you do not know how strong you can be until being strong is the only option you have. I take one day at a time because that is all I can do as I do not know what each day will be like. My good days are few and far between (more bad than good!), but I always try to find the good in the day ahead no matter how much pain I am in.

What is one thing you wish those without CRPS/RSD would understand?

That this monster is real and that I do not share my life, my issues, my chronic pain for pity, sympathy or attention. I talk about it, educate, and advocate because I do not want others to go through what I have. If one person is touched, just one, then something good has come out of all the hell I go through on a daily basis. In the end, it was worth it because I helped someone in one form or another. I will continue to fight and spread awareness until I have nothing left.

But, most importantly don’t pity me, don’t pacify me, don’t baby me and DON’T STAND in my WAY! FIGHT WITH ME, NOT AGAINST ME!

What advice would you give to newly diagnosed Warriors?

The best advice I can give to someone newly diagnosed with CRPS is give yourself TIME. You are going to get angry, you are going to cry, be scared, and mourn. You are going to be uncertain of your future and all of these things are okay and are expected to happen. But as you find your path and you learn how to navigate through this illness, some will be like me and be dually diagnosed or have multiple illnesses thanks to CRPS. But the one thing you cannot ever do is quit.

Believe me when I say you are stronger than you know. You will find an inner strength you never knew was there. You might not see it now, but with time you will become a better person and a stronger person because of your fight.

Most important, please know that you are NEVER alone in this fight as there are countless CRPS Warriors who have been where you are right now. You will learn how to cope with being sick and know we are in this fight with you. WE SEE YOU! We understand and we get it as we have been there. Just remember you can always reach out to a fellow Warrior day or night. We are in this fight together.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

It took me a long time not to judge myself through someone else’s eyes. Living with CRPS and its limitations makes it hard not to, but it is important that we do not let other people’s ignorance define what and how we feel about ourselves. Our illness is not what defines us, strength and courage are. We have to be proud of the things we are able to do even if it is just one thing that we accomplish in a day because only we truly understand the strength it took. 

What activities or treatments have helped you find temporary or long term relief?

I love the water and swimming is about the only exercise I can tolerate. I had nerve blocks in the past that provided temporary relief, but it did not last long. 

Anything else you would like to add?

In closing, I want seasoned and newly diagnosed Warriors to always know that you got this and that you are stronger than you know. You are never alone.

Connect with Belinda via Instagram at @chronic_pain_warrior_2020.

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