How To Handle An Illness
Being sick and still living your best life is very possible… Come see!
Every four weeks I go and get an infusion of medicine via an I.V., and while it’s working and I have a good deal less lupus pain and more energy (my family has noticed that part, too), I have to deal with the side effects of pouring a foreign substance into my veins.
As the medicine pours in over the course of 1.5 to 2 hours, even though the nurses say it will only take an hour, I settle in a recliner and read, um, sleep. I sleep. I drive myself home, which is stupid since I’m really not functioning at a high level, so I might need to ask for help home from now on.
Once home I feel out of it, and I don’t feel like myself at all. It’s tiring to think. I can’t think, and sleep pulls at me. When I fall into bed, I sleep for hours. It’s a hard sleep with no dreams at first, and then after my body has quenched itself on rest I do dream. Weird, uneasy nightmares, except it’s daytime.
I wake and wander to the kitchen for a bite of something easy. I try to watch t.v., only the soft bed beckons and I bring books with me. I turn my phone off. I can’t deal with anything that involves thinking. It sounds weird, but my brain isn’t normal. I’m slow, dull and tired. This isn’t chemo, but it isn’t a health concoction either, and my body rebels.
Day two brings stomach pains, and my need for sleep intensifies. I do wander through the house, blinking at the bright sunshine. I might step out onto the back porch and listen to the birds, but my body pulls me back into the house. I need dim rooms with curtains closed. I try to make myself read, but I’m still adrift. I’m not myself.
Day three is weird. I vacillate between deep fatigue and spurts of energy, or rather the promise of energy. I begin to feel the joint pain loosen and lessen, and my brain can conjure words and cogent thought at times. This day must be honored, or I’ll suffer a setback, because day four is wonderful! I’m back. I’m me, and I’m interested in more than a bed, a movie (perhaps) and a soft pillow.
I have enough energy to see me through lunches with friends, shopping, exercising and cleaning up at home or in the garden, but if I do too much I wind up needing a day of rest. Lupus and my four other autoimmunes only permit me a portion of my old life back. I can push, but I’ll pay.
Learn from me. I know you have dreams and ambitions, as do I. But we who have rebellious bodies have to watch ourselves more closely. Do what matters most to you first. If work beckons, do that. Then have a dinner of PB&J on rice cakes. I find eating simply is best for my body, and I stay away from alcohol as often as I can. Starbucks is my treat of choice, simply because it makes me feel decadent and it is a reminder of my life pre-lupus where I met friends at the coffeehouse after my daily pilates classes.
Do that. Spend your energy on the essentials, and whatever you have left is up to you. Indulge yourself a wee bit, but too much is plain lazy. We need to push a bit at our constraints. I lift weights (5 measly pounds) every night, and I work on my abs. I walk two miles if I can. My dream of running is gone, but we can find new dreams, new goals, and we celebrate the accomplishments of our family and friends.
Don’t begrudge them their health. They have been blessed and kissed with good bodies. We who have not, have secrets they cannot know. We see the inner better, because it is there where we turn. We see inroads made, using our minds and imaginations to take us places sacred and secret. We likely see into others more clearly now, too.
Those who are frustrated by our limits cannot know. I’m very frustrated with someone who doesn’t “get” my process, but then this is a place where only we sick learn. We respect our limits, we don’t push on the really tough days, and they don’t understand we listen to the subtle nuances of our bodies. They march day through endless days all the same. We cannot.
We have learned that sometimes we must lie down. Nothing is left to us. It’s not needless drama, it is essential. Those hearty souls will not know what it is to be tuned into the subtleties in life. Knowing when to expend our energy and on whom, watching to make sure we don’t fall into bed so spent that we pay for it.
I have to believe illness is a gift of sorts. Do I wish it were gone? This lupus? Yeah. All the time, but wishing won’t make it so. Square your shoulders and face the wind. Face your truth. Then smile, and accept the anointing of illness. We have knowledge so few accept. We learn everyday how to navigate our truth, our world, and our bodies. We are still beautiful. And we still live beautiful lives.
