Sense for cents

I've used a couple different analogies to explain MG before. Now let's use another one. Pennies in a jar.

Let's imagine we all have a jar of pennies. Here is the difference. If you are generally healthy, without a chronic disabling condition, your jar is HUGE. Pretend with me here. Your jar is a 3 foot tall 2 foot wide jar... the biggest jar you've ever seen... completely filled with pennies! Wow that's a lot of pennies! My jar, or anyone who has a chronic disabling condition- their jar, is a tiny jar. It is a 2 inch high by 1 inch wide jar, very very tiny. And, the jar is only half filled with pennies.

For every single thing you do throughout the day, you have to give a penny to it. When your pennies run out, that's it. When your pennies run out you have to sit or lay down quietly and rest until the next day with the next jar of pennies. So let's imagine everything we have to hand a penny out for...

You start imagining the following... going for a run, walking the dog, cooking the family meals, going shopping, changing clothes until you find the perfect outfit, organizing a room, mowing the lawn, wrapping some gifts, driving here there everywhere, washing dishes, doing laundry, going to a party, meeting friends for drinks, working at your job, texting on your phone again and again and again...

I start imagining the following...

Using my arms: picking up a glass of water, checking email, turning on the light, opening the door, closing the door, turning off the light, turning on the shower, lifting arms to wash hair, blow drying hair, combing hair, putting on make up, changing clothes, hanging up the towel, putting on shoes, opening the pill bottle, closing the pill bottle, opening the fridge, closing the fridge, pouring a jug of milk, opening the cabinet, picking up a bowl, opening the pantry, pouring cereal, opening a drawer, eating with a spoon, writing something down, holding the phone up to my ear, getting the mail, making a sandwich, opening a bottle of water, holding a book to read, picking up something that fell, making the bed, washing face...

Using my legs: walking to the bathroom, walking up stairs, walking down stairs, walking to the kitchen, standing up, standing to take a shower, standing to fix a meal, walking to get the mail, walking to the car, walking into the doctor, stepping into the bathtub, stepping out of the bathtub, walking up a few steps, walking while carrying something, bending to pick something up, bending to tie my shoe, picking my foot up to tie my shoe...

Using my eyes: reading, checking email, typing, writing, reading a book, watching tv, conversing with someone, looking through the mail, fixing hair, putting on makeup, fixing a meal, looking for something, checking texts on a cell phone, looking for the right pill to take, looking at the calendar, going through wallet, finding an outfit to wear, finding shoes to wear...

Using my back/chest/abs/neck: standing, walking, sitting, bending over, reaching up, reaching down, turning, opening doors, closing doors, lifting something, showering, changing clothes, putting something away, breathing...

Using our jaw/throat: smiling, chewing, swallowing, talking, drinking, laughing...

You were able to do everything listed even if you didn't want to, even if you decided not to, without even thinking about it... and you still have pennies left in your jar. My pennies couldn't even cover all the things I imagined, and none of the things you imagined. Therefore I had to make some choices.

I chose to take a shower every other day instead of every day. I chose to let my hair air dry instead of dry with a hair dryer. I chose to ask someone else to cook for me. I chose to ask someone else to do my laundry for me. I chose to ask someone else to drive me to the doctor. I chose to let someone else do the grocery shopping. I chose to get pushed in a wheel chair instead of walk.

However, they weren't really choices at all. They were adjustments I had to make in life in order to have enough pennies in my jar to make it through the day... each and every day. Sometimes life surprises me with a few more pennies than usual, but never a full jar. Other times life takes away some pennies and I have to find even more things I can omit from the day.

This is life with MG. A jar looks "just fine" and at the beginning of the day we have quite a few shiny pennies and seem to even do "just fine" as we walk, talk, smile and breathe. But as the day goes on, after a moment of stress or heat or wrong medication, or sometimes even out of nowhere, those pennies get used up and we have to wisely pick and choose how to use the rest.

It may only be a penny and we may only have a few, but these pennies are so incredibly valuable to us.