I have a “Now or Never” philopsophy to life that sometimes gets me into trouble.
Well, let’s face it….always gets me into trouble!
Living with a physical progressive disability involves a lot of pain, lack of mobility and extreme fatigue every day. This kind of disease is constant. It doesn’t ebb and flow with flares. It’s there all the time, slowly worsening.
The sensible approach to this kind of chronic illness life is to pace all activities, listen to your body and lower all expectations.
Generally I do. I advocate pacing, live and breathe it actually. Partly as I don’t have a choice, plus I know it helps enormously with pain management.
The problem is, despite living with a severe disability for 5 years, my mind still seems to disconnect from my body on occasion. I can still visualize myself jumping out of my chair and cleaning up the kitchen, dusting the shutters, wiping down the bathroom tiles, making the bed, getting dressed, doing hair and makeup and looking like “little Miss Perfect” with all the ease of a healthy 18 year old.
Jump Right In – Taking The Stupid Approach
With a galant “It’s Now or Never” approach, I have from time to time, decided I was capable of doing some extra household chores or going out when I really wasn’t up to it.
I have a set pottering routine each day that I follow to keep my body moving and my home clean, but every now and again a “spring cleaning” task taunts me.
A few months back, signs of a little mould on the bathroom tiles, constantly stood out and beckoned my attention. It clearly needed removing in my mind right now!! I managed to ignore it for a few days reminding myself I was still recovering from spinal surgery. Plus my left foot had been more painful than normal so not a great idea to spend excess time standing on tiles.
Yet the taunting continued.
“You can do it. 10 minutes and it will all be done. A simple spray of some mould remover and rinse. You can even spray and leave for 20mins and use that time to lie down and rest”
And so the scene had been set. It all made sense in the moment. I even had rest built into the scheme. I had it all worked out!
Ha….and there the problem was. I had completely deceived myself into believing something impossible was possible. Sometimes in life that’s a great philosophy but not when you are talking about physical tasks on the “possibly not wise to attempt” list.
The result….my pain levels skyrocketed of course. My left foot was already playing up with a known fracture but this galant attempt at being “normal” (with a crutch in hand I might add as I was trying to convince myself I was being good) was the last straw that broke…..well my foot, as opposed to the camels back.
(Note: The foot would have broken further even without this activity as that’s the nature of my disease, but the activity did aggravate the pain.)
So Why Do We Do These Things?
I ask myself that question at the end of every day. I always review my day when I lie in bed at night and wonder if I could have approached it differently.
Undoubtedly I could always say I’m not able to do anything and throw in the towel. I discussed this recently with my Client Liaison Manager who coordinates my care services.
I told her I wanted to hang on to many of the tasks I do around the home as it gives me a sense of independence. She completely understood and endorsed this approach but she also, very wisely, leaned towards me and said;
“Sam, it might soon be time to stop doing some things you love doing. You might find you are at the point of pushing through too much”
She’s right. I know she is. I don’t like it. Who would? No one wants to live in a body that progressively loses it’s functionality.
She was very impressed with the ways I found to do certain tasks….a wooden spoon, for example, helps me make the bed. It’s great for tucking sheets into the side of the wooden bed frame. My crutch is a great mop when it’s placed on a wet flannel to clean the bathroom floor.
I have long handled dusters and grabbers placed put in cupboards all throughout my home. Cleaning products in my toilets, bathrooms, kitchen and laundry cupboard so they are all within easy reach.
I know I’ll always push the boundaries. I did when I was healthy so it’s unlikely I’ll stop now. I’m still the same person and it’s those qualities, combining courage and determination, that help me deal with living with my disease.
However, even pushing boundaries can be done in a way conducive to caring for our bodies and respecting our diseases.
Learning to live well with chronic illness is an ongoing education process.
I clearly don’t have all the answers. I trip up all the time.
A Push And Pace Approach
I do know this…..we can’t keep pushing, neither can we give up altogether. I know my medical team endorse my approach of trying things out and listening to my body.
We only get one life and progressive chronic disease will take things from you bit by bit. There will be activities you simply won’t be able to ever do again as symptoms worsen.
When that’s the case it’s really important to push just a little while you can, but ensure you have a number of task free days following. Days when you can completely rest and recuperate. I like to call it a push and pace approach.
So, what’s the morale of the story, for those of us trying to live well with a progressive chronic disability? We don’t have the luxury of waiting for a “non flare” period.
Being chronically courageous under these circumstances is not stupid. It’s a survival technique. A way to feel alive, even for a moment. So long as we are sensible, and by sensible I mean discuss with your medical team the type of physical activity you are planning on undertaking, then go for it.
Remember to build in rest time and plenty of pacing days to follow so you can recover.
Oh, and while you’re recovering, feel pleased with your achievements. Enjoy resting knowing there’s still life in this chronically ill body yet!!
I am loving my mould free shower.
Happy pushing and pacing!
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.
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