I’ve decided one of the hardest things, about being medically retired, is working out what day of the week it is!
Every morning I wake up and need to look at my phone, or the pain medication dispenser on my bedside table, to work it out. If it’s the day after my medication dispenser has been fully filled, I’m really in trouble if I rely on this method of day identification!
My life is full in so many ways, despite disease and disability, and the days fly by. Weeks become months at a pace I’m struggling to keep up with.
I’m sure it’s because I’m more focused on surviving my journey through each day, as pain threatens to overwhelm me and makes even the simplest of tasks far from easy.
One of the hardest things about living with a chronic illness, is learning life has to be paced.
No more jumping out of bed and embracing the day with the energy of a netball team.
I know this sounds like an extreme analogy but it’s how I used to live. I had this kind of energy and physical ability.
I have always loved life. I still wake up every day with anticiption the day ahead will bring new and exciting opportunities, despite my circumstances.
And Then Came Chronic Illness
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 it physical or mental disabilities. One minute active, the next wondering what to do with a failing body.
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 this. I can barely move from the lounge room to the bathroom. A 10 minute drive in a car, as a passenger, takes at least 10 hours for me to recover.
I need to look at life, look at days of the week, so differently from how I did as an Executive Manager when I was working to a tight schedule, and having almost every moment of my day planned.
Is it so bad I don’t know what day it is today? No, not really.
Embracing Every Day Like It’s Sunday
I have always loved Sundays. In our home it’s usually a quiet and reflective day. I say usually as I’m married to an Anglican Clergyman and Sundays were far from quiet in the past. It was actually the busiest day of our week!! They have always been reflective though.
Thankfully he is retired now, as my carer, so we can definitely reclaim Sundays as a quiet day.
Some days still feel like a Monday, or a Thursday if I have medical appointments to attend and they are extremely difficult days for me physically. Other than those odd busy days, I can pace myself.
It’s why I’m medically retired, to care for myself, 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 physically my bone disease limits me, in every area of life, due to pain and disability. My broken bones serve as a constant reminder.
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 mentally who used to jump out of bed every morning with way too much energy.
I can’t change my health situation but I can always change my mindset. A while back I decided to deliberately choose to embrace my new life.
Just Say No!
I’ve been medically retired now for 8 years. For the first 7 years I still wanted to conform to the “normals” of life. Point in case was when I was arranging appointment times. If someone asked if I could attend an early morning appointment around 8am, I’d say yes.
It was a ludicrous thing for me to attempt. My husband and I would need to do absolutely nothing the day before so I was completely rested. On the day of the appointment I needed to get up no later than 5am to begin the process of getting my body to literally function, deal with my stoma and get dressed while in excruciating pain. The following 5 days would be a write off as I recovered.
As I look back why I felt the need to say yes, when it was a ridiculous thing to do, still baffles me. I think mostly it was because I didn’t want to be a nuisance. I wanted to make the other person’s life easier and work with their schedule. I was aware others also needed appointments and I was grateful to be given one. These were my thought processes for better or for worse.
My disease began to significantly progress a few years ago. I finally realised I needed to change my behaviour and thought processes, especially if I was serious about wanting to live the best life possible.
My “yes” needed to become;
“no sorry it’s not possible but what I can do is this”
This now is like second nature to me. I was reminded today how far I’ve come. I received a phone call this afternoon from a care provider. The lovely lady is coming to do an assessment and she asked if she could come at 8am.
A little alarm triggered in my mind and the first thought was “No way does this time work”!
I quickly thanked the lady for the appointment offer and calmly explained, because I am disabled, the earliest I can make any appointment is 11am.
It wasn’t a problem. She could definitely see me after 11am.
I was prepared to wait longer for this much needed appointment if we needed to change the day to fit her schedule. On this occasion it all worked out perfectly but honestly, I find every time I have this dialogue where I say, “Sorry, I can’t”, an appropriate solution is always found.
Deliberately Embracing Chronic Illness
Deliberately embracing chronic illness may raise an eyebrow or two. The word “deliberately” is key. I think there is a sense of determination and grit needed to fully accept chronic disease.
You almost have to “commit to it” when you know it’s permanent. Commit to it in a way you would your career, marriage or any goal or life pursuit.
If you have sought all the medical treatment possible, followed your medical teams advice to the letter of the law and been told your disease is chronic, permanent and progressive…..well it’s probably time to just go with the flow and accept it for what it is.
I have learned to live very differently over the past 4 or 5 years.
Acceptance has been a gradual process but a necessary one to discover a new quality of life.
Finding A New Quality Of Life
“Quality of life” means different things to different people. We all have to work out what’s truly important to us to find a meaningful way to live.
For me, being passionate about serving others has been my driving force. My life has always focused on serving, both during my career in the business world and in my roles in church life. When I was working and serving others I was always happy and content.
I was also always content in my home. I’m a homebody. I was happy with quiet weekends, takeaways in front of the TV, or fish and chips by the beach.
I loved road trips but never had a burning desire to “travel the world”. I travelled to the UK when I was 18 and again at 20 and my international travel bug was satisfied.
I’ve travelled extensively throughout Australia, and my husband and I have lived in many different places across our beautiful country. I’m content with the wonderful experiences and memories I have from my “healthy” days.
I’ve definitely created a “new quality of life” and in many regards it isn’t much different to my old life….I just do it all from home now. My fingers do the walking online as I serve and share with others on my online forum and through my writing. Our car can still take me on short drives to look at beautiful scenery.
I can still potter with home decorating and I’m so grateful, for now, I can still live in my own home.
I’m not going to waste what precious energy I have being angry at my disease or my body. Things happen in life to all of us in varying ways.
Things we didn’t see coming. Things we wouldn’t have chosen. Things we can’t change.
I’m “deliberately” accepting my circumstances so I can get on with living the best version of life on offer to me.
I’m “deliberately” giving myself permission to “stop and smell the roses” every single day as if it’s Sunday.
Ultimately, it doesn’t matter what day it is.
It matters I make the most of every single day and make the moments within the day count. It matters I don’t waste time being discontent about my circumstances. If I do allow myself to feel hard done by, or focused on what I can’t do, I’m only making my life harder.
Who knows with enough Sundays all strung together, I might actually be able to enjoy the odd Tuesday and Wednesday….Monday’s may still be a bit much. I’m quite happy to wake up on a Monday and realise I don’t have to jump out of bed and rush to work !!
There are some bonuses to being medically retired, and I think we need to embrace whatever new blessings come our way.
What day is it? Not sure, don’t really care, just happy to be alive with a day ahead, full of opportunities, to deliberately embrace a contented chronic illness life.
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.
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
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!