One of the hardest things about living with a chronic illness is learning that life has to be paced. No more jumping out of bed and embracing the day with the energy of a basketball team. I know that sounds like an extreme analogy but that is how I used to live. I had that kind of energy. I have always loved life and I woke up every day with the anticiption that a new day would bring new and exciting opportunities.
To do what you might ask?
Well, just to live and contribute to society, be that business, community, home life, church life…whatever! I know I am not alone in experiencing a life changing health event. There are many, many people suffering from long term chronic illnesses, be that physical or mental disabilities. One minute active, the next wondering what to do with a failing body.
Today is Sunday and I have always loved Sundays. It is a day when I have always been quiet and reflective. Well, reflective anyway. When you are married to a Anglican Clergyman, Sundays are usually far from quiet as it’s always been the busiest day of our week!! Thankfully he is retired now, as my carer, so we can definitely reclaim Sundays as a quiet day. So while I have been reflective today, I began thinking about how my life has changed and how really everyday is now like a Sunday for me. I have to pace everything I do.
I can make lists as long as my arm but there is no way I can physically achieve them. I can dream of far away adventures or just popping out on a whim to visit friends or family but the reality is I can’t do that either. Is that so bad?
No, not really. Sunday is my favourite day and now I have lots of them. Some days still feel like a Monday or a Thursday if I have medical appointments to get to but other than that I can pace myself. That’s why I’m medically retired, to care for myself and manage my disease and find a new quality of life.
The biggest battle with embracing everyday like it’s Sunday, is with me.
I know that physically I have a broken left femur that won’t heal, the right femur has a rod in it to prevent a full break and is incredibly painful, all as a result of a rare bone disease that is killing off my bones.
I also have Rheumatoid Arthritis which affects all my joints and the cherry on top, my permanent colostomy. You would think I would be intelligent enough to give myself permission to treat every day like Sunday, or at the very least like Saturday!!
Mostly I do but there are still moments and days when I want to run, I want to plan and I want to contribute to life on a larger scale like I used to. Underneath the physical disabilities I am still me, I am still that same person that jumped out of bed every morning with way too much energy. I can’t change my health situation but I can always change my mindset and I am choosing to embrace my new life. I have learned to live very differently over the past 4 years. It seems strange to say this but it has actually been an incredibly busy 4 years with so many surgeries, so many hospital visits and new diagnoses that I actually do need a good month of Sundays for my body to recover.
So, I’m going to give myself permission to “Stop and Smell the Roses” and who knows with enough Sundays all strung together, I might actually be able to enjoy the odd Tuesday and Wednesday….Fridays may still be a bit much !!
If you’re looking for genuine support, care, understanding & 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 & complex diseases, who truly understand the daily challenges. A warm welcome awaits.