I think one of the hardest parts of being chronically ill is realizing you start tracking your life by ‘Counting the Good Days’. The greater part of the population tend to mark their bad days. You hear things like, ‘I was sick last week’, ‘I had a migraine’, ‘I had a flu over the weekend’, or ‘I injured myself’…which is usually a pain with an end. When one is ill, or injured, they experience pain, which is real and noteworthy for anyone, and then after a recovery period, they are back to good days. However, when you are chronically ill, counting by bad days is an impossible feat.
Case in point, today was indeed not a day I could count as a ‘Good Day’. The funny thing, is if I counted by good days, my total number would probably not make it to a combined 3 digits over the last 10 years. Why? Because I am chronically ill. Please understand, I am not talking about love, work, and life, that part of my life is marvelous…I have a husband I love, and who loves me; we have children we are proud of and whom we share mutual love and respect; our family has run a successful business for the last 20 years, and Josh and I are gleefully looking forward to an empty nest in the next five to ten years after our children are comfortably settled into their own lives. I am truly happy with my life, no, what I am talking about is strictly about how you physically feel on any given day.
For most of us who live with chronic illnesses, ‘Good Days’ are rarer than most of us want to admit. Therefore, when I am asked how I am feeling, I struggle with the answer. My friends and family who are able bodied would have difficulty if I answered it truthfully and I simply could never do that to them. In my case, to answer that honestly, I would have to admit that I am never out of pain; that I struggle to keep my legs from spasming minute to minute; that I do not sleep from a damaged central nervous system that primarily processes pain triggers now and therefore do not get proper rest which leaves me lethargic most days; that my feet, legs and hip joints are locked into positions, unable to move past a certain point, which does not allow me to stand and is, once again, painful; that my upper body is weak and I cannot pick-up and hold things well; that even styling my hair in the morning means having to support my arms on the cabinet because they are too weak to hold above my head for any given time; that my mind works in spurts, on and off all day long making it difficult to read and understand concepts at times…. The true answer is just too much, even for close family. So, I respond, as so many of us do, and say ‘fine’ so we can all move on, but it is not true. Being honest is reserved for those special places, like our Healing Fibers’ meetings, where everyone understands what it means to count your life by ‘Good Days’.
It is those Good Days we live for, just like everyone else in the world, but for us, they hold more meaning, because they are rare. Those days when you lay in bed and realize, the pain is manageable. When you can get up before noon and your muscles actually move a little. When you can read an article and the words don’t blur together and it doesn’t take two or three times through before you finally understand what it is saying. When pain management isn’t zapping all your energy and you have a little to do the things you want to…you know, a really Good Day.
It is those days we count! Those are the days that get marked on our calendars. We live to go from ‘Good Day’ to ‘Good Day’. We hope for more but are happy with what we get. Our bad days are far too plentiful to be noteworthy, they are what we struggle with for far too much of our lives, but those Good Days, those are the ones where we feel human again and gives us hope. No matter what is happening around us, what our circumstance of life is like, what our struggle or challenge is, the Good Days are extraordinary for us because those are the days we feel normal again. When I look at my calendar, I don’t have days marked with ‘the flu’, or ‘pain’, or ‘cold’…. I have smiley faces that reminds me, even if today doesn’t get marked, better days will come. There is hope…
So, I count my life by ‘Good Days’, with the hope that the future will bring more.
Serenity in Fiber,