is the best description for life with a chronic illness.
Sometimes it feels impossible to live inside this body. It’s as though I am built out of a house of cards and the slightest puff of air can send me spiraling apart.
Every day I have to balance environment, medication, diet, exercise, mood, rest, etc. in order to minimize my pain and maximize my health. If a single thing is out of whack, my house of cards collapses to the ground and I am down for the count.
It’s a difficult feeling to live with and it can leave me feeling lonely, anxious, and depressed. I sometimes feel as though the balancing act is impossible and question why I even bother trying.
After all, how can you plan for tomorrow when you have reason to believe your plans will be cancelled? How do you take on new challenges, develop new interests or even keep up with the minimal required steps for modern life when you are repeatedly ripped away from those things by failing health?
The truth is, sometimes you do and sometimes you don’t.
There are times you can do absolutely everything right and still there is something outside of your control that wrests your meager portion of good feeling out of your hands and sends you back to the sick bed. There are too many days when everything is truly outside your control.
Then, on the good days, just the rigamarole of survival can be tiresome.
Making sure I eat enough protein, avoid inflammatory foods, drink enough water, have the right amount of electrolytes, take all my vitamins, take all my medications, stretch in morning, use the cervical pillow to stretch my neck, use the vibration plate to strengthen my legs, use the hula hoop to strengthen my core, use the balance board to combat vestibular damage, use weights to keep my arms strong enough, use trigger point balls to unlock frozen muscles, cold plunge to lower inflammation, move around to rebuild nerve fibers, have enough coffee to lower my headache pain, have enough yogurt or kombucha to maintain gut health. All on top of the normal things one does in a day to be a person.
How jealous I am of those who can just get up, shower, eat and leave for a day of activity.
I try to keep up with those things on all the days but really bad days result in missed exercise, less movement, lowered food and water intake, and less self-care, which sets me back. A string of really bad days sets me back enough to make the litany of items I have to do on my good days overwhelming and I begin to feel like my health is slipping through my hands. I worry that each setback brings me closer to further disability. I worry that each flare up is the new normal.
If I catch a lucky break and I get a long enough string of good days to catch up on laundry and cleaning and other life maintenance tasks I will start to create and engage with life again. A long enough string of good days and I start to think “maybe this time we’ve found a system that works.” Oh that’s a dangerous hope. It gives me the slightest belief that I can stay right where I am in that moment, well enough to do all the things I’m doing, and there may not be another string of bad days.
But we haven’t found a system that works because there isn’t one. There is only the house of cards, the random puffs of air, and me caught in the middle. It’s human nature to see strings of good days as a good sign and strings of bad days as a bad sign, we are pattern seekers.
In reality, my only reliable pattern here is unpredictability.
