I have had chronic pain for 15 years. I was 13 when it started. In particular the past five almost 6 years now I’ve had level 10 pain this whole time. I have full body pain and it never quits. I’ve bed bound for 10 years.
You keep living because of the people who love you. You keep living because what if there’s a cure created tomorrow? You would not want to miss that. You keep going because you can help others with the lessons you’ve learned. You keep going because of those rare good moments where you may be in pain still but you can appreciate a stranger smile or being able to commiserate with your family when they have struggles.
I have been through a lot just in my short life including waist down reconstruction surgery. I often wish I could die but I lost my best friend to suicide when I was 15 because I refused to date him and I have seen what suicide does to those who get left behind and especially to those who have to discover their loved ones dead.
How the loved ones left behind wonder if it’s their fault that the other person wanted to die. They wonder if they just took the time to sit down and talk to them, if they could have saved them. It’s not worth it. If I checked out 5 years ago or even 10 years ago when my pain was so excruciating I couldn’t use my hands or when my feet hurt so bad that I couldn’t even touch it to a blanket let alone the floor.
If I had done that all these incredible and incredibly hard 5 years would have been null and void and all the people who I have helped and been an example to even when I didn’t mean to would have been non-existent. They would be answer-less and feeling like no one gets it.
Those of us who don’t live normal lives we learn how important the simple things are. When most people go throughout their days not appreciating the real things, we do. The world needs us so much more than it knows. SO much more than WE know. Hindsight is 20/20 right? So hold on until you can look back on the now and see the good that was coming.
The most important thing is to create or plan things that you can actually do that you can actually accomplish. Living life in pain sucks especially when that’s all you have or that that’s all you think you have.
There’s so much more to life than that. Yes I’ve been an excruciating pain for at least 12 years of my life but there are many ways to learn to ignore it so that you can live your life or at least enjoy a few things in life.
It’s a journey.
I often think of those who decades before had to deal with pain like we did except they didn’t have all of the advancements in technology to help them. But yet so many pushed through. Their legacy didn’t just fade away. It keeps a 26 year old girl moving even when she sobs multiple times a day from the pain.
There are things that make life worth it.
Make it your mission to discover those.
We only get this life once! Don’t let it go to waste!
Please keep going. Be that example this world needs so very much. And if nothing else, keep going for those little things that make you smile.
Currently my favorite is hot chocolate and gingerbread even though the hot chocolate doesn’t treat my GERD how it used to.
I like to think of it as a challenge created just for me. If anyone can see the pattern and use it to their advantage-it is me. My own superhero lol
Are you religious? I find that being from The Church of Jesus Christ of latter-day saints gives me more strength than any pain medication any doctor has suggested.
I’m not saying that everything’s perfect but I do have some good times. It’s a cycle though there will always be weeks or months where I struggle to keep going but it’s because of those little good things that make it worth it.
My brother growing up and graduating high school, my sister having four kids, my three nephews and one niece and being able to teach them about people in pain.
I have brought the knowledge to so many people about disabled life. ME! Even as a 15yr old girl I was teaching people and I was teaching myself how to handle pain. I suffered in silence for 4 years after graduation. No one realized I was still in my childhood bedroom, bedbound in excruciating pain wishing I could disappear.
You would think I would wish I could have opted out of those years of being alone but I wouldn’t. It was the learning powerful experience I needed and more than anything it helped me see how much better my life is being open about my struggle even if my pain is even more worse than it was then.
You can’t imagine how many people I have had come to me and ask me for advice on how they can live, how their older parents can live, or how to help their sister’s boyfriend who has chronic pain feel welcome.
I became that icon of pain because of my struggles and being open. I have helped SO MANY ‘normal’ people I have grown up with and known learn about the life of the disabled. More than anything I was to open everyone’s eyes to each others struggle because then we can all help each other with the things we have learned and THEN we can never feel alone or forgotten like I did and sometimes still do.
Create that life that you can be happy for even if you still have pain and bad health. I am telling you how possible it is. I am 26 and I have existed 15 years to know this. I know sometimes it might feel you don’t have any power but trust me you do. You have so much more than you can comprehend. You need only open your eyes.
Published on The Mighty as "What Helps Me Most in Life With Chronic Pain".