(Photo: Stolen from the internet. This is a serious topic, but I have to have a giggle even so.)
At first, you doubt yourself. Over time, though, small evidences add up until you can’t deny it any more. It’s like the faint smell of perfume or aftershave on your pillow, or a credit card charge that doesn’t make sense.
Your partner acts distracted. They seem to be looking through you. He or she acts differently, forgets, gets confused about things that were clear as day just yesterday or last week.
Perhaps your spouse has been telling you. You’re busy though, so it hasn’t sunk in. Finally you come home one day and the truth is incontrovertible.
It could take weeks, months or years before you twig that something’s not right. At first you are just confused. Then comes the slow simmer of anger. WTF? This is not part of our agreement. Why is (s)he so angry / tired / unavailable / disorganized / unmotivated / sloppy / lazy? Where’s my [ insert good thing you had gotten used to here – breakfast? dinner? sex? tidy house? loving greeting when I get home? favorite dinner partner or date?].
Yep, someone new has moved in. You are now second banana. Welcome to life with a partner who has chronic pain, autoimmune disease, or inflammatory disease.
Your and your partner’s mileage may vary. But here’s my story and I’m stickin’ to it.
For me, it started with a long stretch of daily low fevers, swelling, aches and pains. I brushed it off. I ain’t got time for this. I was an ambitious working mom. I demanded much from myself professionally, as a Southern parent, housekeeper, friend, hostess, and creative being. I just figured I had to work harder and smarter.
Autoimmune disease (arthritis and such) runs in my family. My mom said that what I thought was hormones or sun damage was the lupus butterfly on my face. So I finally made the time to ask a doctor. He looked at my warm swollen feet and my log of daily low fevers.
He didn’t even test me. He said autoimmune disease was a constellation and a moving target. With diagnosis or without, the need for self care and lifestyle change was the same.
Fair enough. I exercised harder. I was stricter with my diet. I nagged my spouse and kids about the damage they were doing by eating sugar, carbs, too much protein, too much processed food.
We moved to my spouse’s home town here in high cost of living Wine Country. I was glad to move, but I said I would no longer kill myself to maintain a standard of living. We would have to simplify and downsize (oy did we! who knew!). I became a housewife.
This will do it, I thought. I will have time to better juggle the needs of my family and my new boyfriend pain. Maybe I can even kick out my new boyfriend pain. Hey! It’s California! I will finally find my spiritual home – vegans. Healers. Yoga. Blue skies. Redwoods. Granola. I will have time for a healthier lifestyle and give my family a better quality of life.
I walked miles and miles each week, rain or shine. I took my passion for dance out of my living room into a class. I did my first recital at age 42! I started running. I upped my cooking, decorating, and artistic/creative games.
I had a relentless housekeeping routine and asked the family to pick up after themselves to keep it going. I had been cleaning our floors by dumping boiling water and apple cider vinegar on the floor and skating around on specially chosen ‘cleaning towels’ for years. I never related my resentment of people leaving shoes and other things lying on the floor, or dishes in the sink, though, to the cost to me of extra steps or extra bending over to pick up, put away, find- see spoon theory. I dragged the family on hikes. I started a small business.
I decided to homeschool our youngest. Don’t be fooled. Homeschooling – and, as I eventually chose, thanks to a dear mentor and Pam Laricchia, unschooling – IS better. It is also much more emotionally and logistically intense than school. It’s just – better. I read parenting books, volunteered like crazy at both kids’ schools, and visited my older child’s high school counselor to gain insight into healthier more loving life with and better support for a teen boy.
These things gave me great joy. That was also the darkest time in my married life. And we’d already been through some doozies.
I recently looked back at my diaries from the years after we moved. I no longer had a job or my child’s school to get up for. I had all this ‘extra time’, but I got around five hours of sleep per night. Pain woke me morning after morning at 3, 4, 5 am. See my facebook posts from that era about ‘insomnia’. Well, you could if I weren’t writing anonymously.
I had to work harder. I had to work smarter. I had to get more done, as a housewife, as a parent, as a community builder, as an artist.
I wonder if my spouse was so angry with and critical of me in part because I was so inwardly angry and so driven to ‘be better’. This does not excuse any wrongs or failings of his. He is in charge of his own thoughts, behaviors, words, beliefs. I know that despite an extremely abusive home life, his mother maintained Donna Reed-like calm and routine in their home. I am anyone but Donna Reed, but I did take great pride in working very hard as a parent cook housewife. But the energy consumed by my new boyfriend was probably a big underlying factor in our conflicts.
When I asked doctors about my pain, my bloodwork always came back clean. I explained to my husband how frustrating it was to have this pain with no diagnosis. He said, I’m just glad you don’t have lupus or some other life threatening disease. Well, that’s nice. But – …? There I was, with my proverbial di- I mean, with my proverbial finger in my ear.
One doctor told me I was drug seeking and depressed. I should go get my depression treated. Asshole.
So I went to counseling, alone and with my spouse. My counselor did ask if I was possibly somatizing the pain in my relationships – creating my physical pain due to emotional pain.
We never explored the impact of my new boyfriend pain, or his associates, autoimmune brain fog and shorter temper, on my relationships. I saw myself working harder and harder at great cost to myself. I saw myself criticized and hung out to dry over, and over, and over.
Finally, it was time to try pills (again- the only way I had maintained my productivity in our Dixie community was with adderall, xanax and antidepressants).
Luckily for me, the psychiatrist I saw was the first MD to take my pain and lack of sleep seriously. I told him I needed sleep so bad I was looking for a hammer. He prescribed various sleep aids and depression meds that were known to also help with chronic pain. He listened. He changed it up as needed.
I still see him. I asked him about it later. He said, well, whether your pain is psychosomatic or not, whether you are a hypochondriac or not, pain and lack of sleep can lead to very undesirable outcomes in a psychiatric sense. Thank God. I should thank him again.
The home situation was tough. I kept working harder through sleep deprivation. I kept nagging my family. I was miserable. Our family fell apart. It was an incredibly toxic situation. I couldn’t get out. My husband told me I was welcome to leave but I could not take my daughter. I was lighting match after match after match to stave off blackest darkness and find joy for my little one.
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End Part 1