Another Day of Pain?
How to face ongoing illness and the sadness that is piled on top of it all…
While trying to figure out what I wanted to write about on Medium, I realized the best place for me to help anyone was by writing about those of us unlucky enough to face chronic health problems. I started out my life by screaming for a year, if my parents are to be believed, and my extended family has backed them up.
I wasn’t breast-fed, so I had to stomach cow’s milk which doesn’t agree with me. They tried soy, but that was worse. I have gastroparesis thanks to systemic lupus, but before that my stomach hurt most of the time. I did an elimination diet in 1990 all on my own. No sugar, wheat, dairy, soy etc. I ran three to five miles a day, but I managed to secure the crappy genes from both sides of the family.
In other words, I have the sick genes from my mom’s side, and the sick one’s from my dad’s. While they wonder where my blonde hair comes from, I want to blame someone for handing me a malfunctioning body. Where do I go for a refund?
I’m not going to list all my issues here, though I’ll be focusing on helping you through your own personal health hell. I have a migraine most days, just like my great-aunt Kay. Yay. I saw a migraine doc who had me write every little thing down until I was stressed out by all my triggers, and stress is a trigger. The doctor wanted her stupid diaries filled out three times a day, and I decided to stop writing in answers one hour before my appointments with her.
All I wanted was the damn botox injected in my scalp and neck, but she wanted my time dominated by migraine observations. I was fired from her practice. Seriously. Now I eat all my triggers and actually enjoy life more. Weird, right?
Before I give you a secret on how to handle having a decent-looking outside while you’re rotting on the inside, I want you to know I faced my first autoimmune disease at age seventeen. Diagnosed at eighteen, I was ravaged by the scalding acidic burn of urine on a bladder wall that had been eaten raw with no lining. Making it through college and my career was tough.
I learned to pee everywhere at the drop of, well, my jeans. I had to get the acidic urine out at the most inconvenient times and places. One Christmas Eve my dad picked me up at the airport where we were headed right to Midnight Mass, only I had to go so badly that he parked at a bank; and I went behind a bush. Going out in college meant public urination in the darkest places I could find. Try that while being semi-drunk. (I swear drinking in Wisconsin is the state’s hobby, and that’s where school was. So I had a hobby, too.)
If you’re going to make it with a malfunctioning body, don’t buy into the doctors and people who say it’s your fault. Damn them, but it’s what they say when they don’t know what to do with you. If you only ate better. If you only exercised. I am here to tell you not to blame yourself for most illnesses. You are not to blame. Your body is, and that’s a huge difference.
Notice doctors don’t tell cancer patients it’s their fault for getting cancer? Then why are we to blame for back pain, migraines, lupus, arthritis, Sjogren’s, or interstitial cystitis? We aren’t. They just don’t know what to tell us, so they blame us for our pain. Don’t buy their guilt. Shove it right back onto them. Doctors do not like not knowing things, and I’ve learned the best doctor and nurses say when they have no freaking clue why we’re in pain and so sick.
Before the Mayo Clinic removed my bladder, I was so ill from the pain that my hair was falling out. I had two very young children and spent my days running to the hospital for the opium suppositories that let me sleep for three hours a night. I made agony my best friend. All I knew was pain. When the nerve pain kicked in on Mother’s Day, (What a great gift God! Thank you!….God knows I love him, and he can handle my sarcasm. He’s God after all.) I found myself reeling.
Sarcasm is good. Humor helps. I read a book about a man who watched comedies and he healed himself. Tried that and didn’t work. So watch what you want to watch. I think A Perfect Storm and Titanic are feel good movies. People dying have it easy, or so I think. We who live in pain, hurting and suffering are marginalized, because this world only wants us to contribute. What are you if you can’t work, can’t do much and need to rest, but you aren’t dying?
Useless in the eyes of so many. That’s what we are. And I’ve spent most of my life worried about what I look like on the outisde. (Try aging. It ain’t pretty! So I’m doing that fairly well.) I’m here to tell you that just being here on this planet sucking in air is enough. You are alive. You are enough. You. It’s all about you! Don’t let people make it about them.
Oh, they’ll try. They’re disappointed you didn’t pay the bills today, or walk to the mailbox to get the mail, or drive to pick up dinner or whatever. Well people who have energy (remember when you had some?) do not comprehend day following day of fatigue. Endless fatigue. Those errands you did actually run? Weren’t enough. Don’t buy it! You did enough! Now you can catch your breath and lie on the floor in utter exhaustion.
I’d give my left arm to have a modicum of energy. I wake up feeling like a truck ran over my body, and yeah, the migraine is cramping up my neck and arm again (oh joy), so I suck down coffee for caffeine. I pretend I feel good, and try to clean the cat litter, sweep, eat (except my stomach doesn’t like most food), and I talk on the phone to people I love. Maybe some days you can make the bed and empty the dishwasher and call it a day. I’m not kidding.
Maybe you need to parcel out what you need to do over many days just to pace yourself. Don’t worry about looking lazy. I spent thirty years trying to look all put together, and now I realize there are days it’s not going to happen. Get over other people’s expectations of you. Get over your expectations, because you’ll disappoint yourself. Try to be there for your family, but anything after that is gravy. Family gets your energy. And you. You.
I will say this: Smile. It helps. You can be upset for a day. But then you have to smile. Frozen dinners were made for people like us! Smile. Watch your feel good shows and movies, and then pretend you feel good. If you can. I’m ignoring my neck that’s stuck and hurts. Let’s ignore and smile together. Let’s laugh about being stuck in our bodies.
I’m going to write about being sick, and I hope you join me. You’ll get the truth from me. You’re going to hurt. You’re going to feel like dying, but we were handed bodies that betray us just shy of death.
That’s okay. We’ll muddle through this life together. Even though it’s our lives that feel ruined, it doesn’t have to be that way every day. I’ll show you how not to settle. So smile. We’re just getting started!
