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 this 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 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. This morning was the start of a rare day. The pain in both my legs was unrelenting and my back refused to allow me off the bed. 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.
It wasn’t self pity. It wasn’t even regret. It was despair arising from chronic, debilitating, overwhelming pain. My stoma also had a blockage as a result of needing higher doses of pain killers and this causes my pain meds not to be absorbed. I was fighting a losing battle.
I needed to find the strength, and even courage, to get on my legs, to get off the bed and get to the bathroom. Sounds so simple in words but the reality of doing it was anything but simple. It was terrifying. Every attempt at movement resulted in a blood curdling scream. The pain was so raw, as if having surgery without anaesthetic.
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 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.
I’m Not The Only Stoic One
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 too 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 people.
Waiting To Discover My New Norm
Following my recent long hospital stay and acute disease flare , my Specialists are waiting to discover my “new norm”. They are not convinced I’ll recover enough, from this acute episode, to return to my previous ability levels.
My Orthopaedic Specialist explained this week over the phone, in no uncertain terms, I will very likely have further acute episodes which will increase my disability.
My Allied Health team are working on the premise of keeping me comfortable. They are even looking at disability housing as a priority given the extent of my condition.
I was being seen by a Hematologist/Oncologist in hospital as my disease still has a “cancer” question mark over it’s head. The Hematologist organised a special bone biopsy which we are still waiting on the results. Since being discharged, He is staying in touch with me regularly by phone, which is providing my husband and I with a sense of comfort to have his support and know he’s being thorough.
All these things are challenging and difficult to accept. Not to accept them wouldn’t be the “healthy” option. I need to be brave. I need to be stoic while I still can be.
I’m stoically planning a quiet Christmas with my husband. We are in the process of deigning our decoration layout. We haven’t taken any action yet but it’s fun thinking about it and we know we’ll give it our best shot. Why? Because we are both stoic and stupid, plus it’s really nice to focus on something other than health.
For those of us battling chronic disease, knowing 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 I have been blessed to administer online support forums and I know I don’t journey alone.
Others living with chronic disease have stories 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!
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women