What do you do when something beyond your control affects your day, your week, your year, your life.
I bought a hoodie, one of two that I love, from the talented Stacy Hart aka Mama Chill. Both were from her “running on empty” range, which are extremely appropriate for anyone with a chronic illness which affects energy levels. If you don’t know Stacy then please head on over to her blog because she’s one sassy, incredible fighter and someone I respect very much.
Here’s an old pic of me wearing the black one I have (I have another in grey with a different graphic on the front ~ it’s a skeleton running with the words “running on empty” alongside it). Next time I wear them I will have to take photos for you!
I know that if you follow this blog you are aware that I have a number of chronic invisible illnesses which affect my cognitive function as well as my immune system, energy levels, mobility, gut mobility and cause me pain in my joints and muscles (among a myriad of other symptoms). If you are here for the first time I’ll list them now with the links for further information. Myalgic Encephalomyelitis, Hypermobility Ehlers~Danlos Syndrome, Fibromyalgia, Diverticulitis, Depression, longstanding since my late teens and lastly pesky kidneys, stage 3 kidney disease that currently only requires annual blood tests to monitor.
So now I have that out of the way, I know I’m greedy hogging all these conditions instead of sharing them around, you will understand why often I have to adapt to circumstances beyond my control.
Referring back to Mama Chill, she is quite the wordsmith and wrote a poem about M.E which, to be honest, could be also written about my other conditions too ~ especially the Fibro and HEDS..
It’s exceptionally frustrating to not be able to plan to do things ahead and know 100% that you will be able to make it. I do plan ahead, try to take in all considerations, make contingency plans, but even then I can’t guarantee that on the day, despite all preparations, I will be able to do it.
So, what do you do? Is my question, to try to live a life to the fullest whilst also managing your physical and mental health to the best of your ability.
One of the girls doctors came up with a brilliant analogy, which I prefer to The Spoon Theory written by Christine Miserandino. Although the spoon theory is great, for me, the car analogy seems easier for me to understand, clearer I suppose.
Imagine your body is a car. Not a bright shiny new one but a real old banger, the exhaust is hanging low and smoking, the speedo is broken, it’s not economical and is covered in rust. It’s old, its rough around the edges, not a great beauty to be honest ~ but it drives, it tries, it may need jump starting now and then, the battery becomes flat easily so you keep a charger in the boot, along with the jump leads, spare tyre, fuel caddy and the portable tyre air compressor which plugs into the cigarette lighter. Knowing its age and potential for breaking down you also keep a blanket, bar of chocolate (supersized), warm coat, warning triangle for the road as the hazard lights don’t work and a portable mobile phone charger for that AA call ~ your poor car is too old to have built in usb chargers and you daren’t overwork the poor cigarette lighter in case you need it to plug in the tyre air compressor.
Our bodies with chronic illness are like the old banger ~ our gas tank may have a few corroded holes in it too, so no matter how much fuel you put in it, it continues to trickle away meaning you don’t get as far as you would like on it and need to take frequent stops to top up.
Like the old car, we can prepare as much as we can to deal with any issues but can’t always foresee a major break down, when the tow truck has to be called in and major repairs carried out.
We love our old car, it’s weathered many storms despite all adversity and we can’t afford to trade it in for a new model anyway. Instead we scour the papers and news outlets for news that fixes have been found for our model of car, that we can patch it up and the garage will work it’s magic until it is like new, highly economical on fuel, exhaust is secured and no longer smoking and we know we can rely on it come hail or snow.
We are at the stage with my illnesses where we are still scouring the news, no fixes have been found ~ although many attempts and trials have been made. We have to be patient and sit it out, hoping that a mechanic somewhere will have a moment of genius and figure it all out.
That analogy makes more sense to me than spoons ~ which perhaps is just because my brain can see the picture more clearly that way.
So, what do I do? I wait, I hope and I do whatever I can to help myself feel better, do better, plan better. I don’t always get it right. I often run out of fuel halfway to my destination and spend more time than I would like on the ramp in the garage with mechanics scratching their heads before patching me up and sending me on my way.
Life isn’t bad though, it could be far worse. Humour is a factor in how I can deal with the cards life has dealt. Plus my dysfunctionally functional family around me keep things interesting and none of us get to keep the “I am considerably more poorly than you” t~shirt.
I wait for medical breakthrough.
I wait for awareness to break through to the masses.
I wait for compassion and understanding from others, who as yet don’t understand the limitations these illnesses bring.
I wait for health care professionals to all be on the same page and following current protocols instead of those initiated by dinosaurs from the past.
“One day” I tell myself “one day we will find a way around these illnesses and reclaim the life I want for myself and the others who are suffering too.”
Hope must be kept alive, yes you can chunter and swear until the air turns blue to vent, to blow off steam ~ then re-centre and continue forward.
Remember ~ there is life in the old banger yet!