This post is not for Newbies. It’s not for patients that are early to the diagnosis, or for the majority of patients who deal with this disease and then get pretty much completely better after a couple of years.
This post is for the “long sufferers”. The patients that have more complex medical situations, that one surgery won’t fix. People who have cysts throughout their spines, and/or possibly other co morbidities that they have had to learn to live with, and likely will for the rest of their lives.
It’s a message of HOPE for them! No, we may never get back to who we were before TCD, but we also don’t have to give up and stay in bed the rest of our lives! I do have pain daily but I manage it with the Protocols that lower my inflammation, and with other resources that I’ve learned, that can help our minds focus outside our pain!
First and foremost, I want you to know that this post is by no means telling you that “pain is in your head”! Some of us will live with some level of pain for the rest of our lives, and no activity will stop that.
What this post is about, is how to focus our brains on other hobbies or endeavors that we may have never considered before.
Prior to TCD and its accompanying co morbidities, I was generally identified as an athlete. I surfed, played tennis, and was good at just about any physical activity that I tried.
I was also active as a Hospital Chaplain, Grief Counselor, Wife and Mother. Nothing slowed me down, until everything came grinding to a halt… That’s when I found myself bedridden and home bound.
I certainly went through the cycles of grief, many times, throughout my journey, but once I got to a place of acceptance that I would never be an athlete again, I needed to find new and different activities that my mind could focus on. Things that could take my thoughts and emotions to a better place.
For me, it became writing and art. It was probably about 3 years post op, and I was still struggling with sitting too long. My only comfortable positions, personally, were lying in a reclining bed, or standing.
That year we had new neighbors move in. He had just retired and had a standing desk that he no longer wanted. It was a several thousand dollar desk and he was just giving it to us, if we wanted it….
We debated if we would use it, and where we would put it, but we decided that if it didn’t work out, we could always find another home for it.
That desk became the one thing that I never knew I needed so badly!
Once I could stand up and work, it opened up my whole world. I started with painting and then graduated to forms of glass and resin art. Eventually I started making shell art and beach decor.
When I look at my early work now, it feels like looking at a kindergartner learning how to color. Over time though, it went from being “crafty” to being actual art, that people want to buy!
Yes, it has become a business, but it’s at my own pace. It is first and foremost my pain therapy. When I am creating, it takes my mind to a different place. I’m focusing on creations and not on my pain. Even if I never sold a piece and just gave them all away, I would still do it and spend the money on it, because it’s done more for me, physically, than any doctor has!
I stop when I need to and I don’t over commit, but it has become more therapeutic than any pain pill or therapy.
Another activity that helped take my mind off of my own suffering was when I was an admin in the medical groups. I did that even before I could get out of bed. Helping others was therapy. Writing was therapy. Research was therapy. Creating my blog was therapy!
I wanted to add this post to my blog for the patients that have dealt with their diseases for a long time and have come to a place of acceptance of your abilities and disabilities now. I want to challenge those patients to look for things that you may have never considered before!
I’ve seen people take up Diamond Art, or just painting, etc. They hadn’t been an artist before but now they love it.
My family owns a medical mobility and accessibility store, and we have patients in constant pain too. We go into assisted living facilities daily and see elderly patients who have no one in their lives and no activities to give them a purpose.
We have also seen patients who inspire us all. One of those is actually a friend of our family. He used to coach youth football when our son was in Middle School.
His name is Coach Jerry and he is now 94 years old. He had never painted in his life until an art class at his Assisted Living Home was hosted, to give the residents something to do.
He was 86 years old and that was the start of his prolific career as an artist! He sells his works, hundreds of paintings now, and he just published a book that talks about “Painting the Pain Away”!
My next project that I’m hoping to start in the Fall, is to go into those facilities and teach the residents how to decoupage a clam shell! It’s a very simple craft and it’s my hope that it will inspire many of them to start crafting together, to take their minds to a better place!
Starting this blog has given me much more time to do my art. Instead of answering the same questions over and over again, I can share a link to the answers here. Others share the links too. If someone has read my blog and still has questions, I’m happy to help them, if I can.
I still talk to and message with the dear friends that I have made through my TCD journey, but now I’m back out in the world making new friends with new interests outside of medical issues.
It’s become a better balance for me personally, but I will still come in here and try to give encouragement and hope for better outcomes and balance in your lives too!
Comments