I was once called “Stoic”, when I was working, because of the way I got on with my chronic health issues without fuss. I was always cheerful, smiling and putting others first.
I kept working full time with that stoic attitude and nature, until my body physically would no longer let me.
Even with a permanent colostomy, Rheumatoid Arthritis, a rare bone disease, which has left me with widespread broken bones and an unstable broken lumbar spine, I am still stoic, happy and positive….on most days!
It’s A Rare Day
It is a rare day that sees me crushed. However, I recently had a very rare day. The pain in both my legs was unrelenting, and my back refused to allow me off the bed without feeling as if I was having major surgery with no anaesthetic. Even though I have a high pain threshold, just for a moment, I felt a wave of despair flow over me. I felt trapped by a body determined to cripple me in a progressive and unrelenting manner. I felt hope and faith slipping away no matter how much I wanted to hang on to it.
It wasn’t self-pity. It wasn’t even regret. It was despair that arises from chronic, debilitating, overwhelming pain. On top of that, my stoma and my inoperable abdominal wall hernia had a blockage as my small bowel intermittently became trapped in the prolapses.
I needed to find the strength, and even courage, to get on my legs, to get off the bed and get to the bathroom, otherwise I’ll end up in hospital for weeks like I did in 2021.
Oh, that’s right, I have COVID, the kind that has been with me for 7 weeks now. The hospital doesn’t want me there, and I don’t want to be there, so I really do need to pull myself together and find that stoicism within.
I’m supposed to be admitted to the hospital next month for a complete review of my health, but I’m not sure that’s going to happen if I can’t shake this COVID! It would be nice not to have this added complication to life at the moment, that’s for sure.
So back to getting off the bed. It sounds so simple as I read what I’m writing, but the reality of getting off the bed was anything but simple. It was terrifying. Every attempt at movement resulted in a blood curdling scream. The pain was so raw!
I eventually managed to sit on the side of the bed and allowed the tears to flow. Did it help? A little yes. The tearful moment allowed me to take a deep breath and pray for the strength I needed to get upright and move to the ensuite.
It allowed me to become just a little stoic again.
I don’t want my disabilities to dictate completely to me. I want to remain stoic. I want to celebrate my daily achievements, like getting upright. I want to be thankful if I can eventually make it to the bathroom.
I want to always focus on what I can do, rather than on what I can’t.
Did I Make It Off The Bed?
I definitely made it off the bed. It wasn’t pretty. My walker was out of reach, so I crab walked, holding onto anything I could to keep me stable and prevent further nerve compression.
I’m pretty sure as well as the known spinal nerve compression. I also have a sacral fracture. I’ve had them before, and the only treatment is conservative rest and wait. They take six to twelve weeks to heal.
That’s a long road ahead, so I know I need to be stoic.
I’m Not The Only Stoic One Having A Rare Day
There will be many people today with chronic diseases like Rheumatoid Arthritis, Lupus, Multiple Sclerosis, Bone Diseases, Cancer etc, walking our streets, sitting in work meetings, caring for their children, looking like they have everything under control.
Their pain will be invisible to most. The reality is they would have struggled this morning, wondering how they were going to get through the day or even how they were going to make it to the bathroom, just like I was.
They are stoic and courageous but they probably don’t think they are.
They will be trying to fit into the norm when their own normal is so different to most healthy abled people.
For those of us battling chronic disease, knowing that we are not alone in the battle is so important. Speaking to others who understand what it is like to wake up day after day with the same pain and the same physical struggle, is crucial to keeping strong.
I’m so thankful that I have been blessed to administer online support forums and know that I don’t journey alone.
Others living with chronic disease have stories that are all unique, and their strength of spirit is inspiring and uplifting….they are nothing short of stoic!
I am not the only one who is stoic, I am part of an amazing community of others with chronic illness who are stoic too……yes that’s you!
Take care
Sam xx
On the flip side of “My Rare Day,” here is the most recent episode of my podcast: The Good Stuff. I give insight into my coping skills on most days and help guide you to find your own “Good Stuff”. https://podcasters.spotify.com/pod/show/my-medical-musings/episodes/The-Good-Stuff-e2klteg
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My Medical Musings 
Well done Sam.Sharing your vulnerable moments is very empowering. Christine
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