I can tell when my kitchen floor needs scrubbing.
Now, that doesn’t always mean I get right down and do it. But I can tell, and it sits in the back of my thoughts as something I know I need to do, taking up brain space until the day my husband decides to tell me that I’m not doing a good enough job keeping house.
I don’t know about you – but this makes me angry. When I get angry, I clean.
You can see how this works out very well for my husband.
So far I’ve talked a lot about the ASD in this house. Everyone here is on the spectrum in some way. The only one with a Chronic Pain condition however, is me. It’s just another invisible illness that – since it’s just me who deals with it constantly – gets forgotten. I have very good friends and family who try very hard to understand what I deal with but in all honesty, I think there is only one person in my circle who never seems to forget that I live with constant pain. Not my Mom, sorry Mom. Not my daughter – even though she is awesome. Not my best friends. Nope.
It’s an elderly lady who lives across the street from me. I’ve never given her enough of my time or followed through on the promises I’ve made to her to come over and bake 20 pies when the apples come in to season. Still. Every time I see her, she asks me, “How are you feeling? I’ve seen your Facebook posts, I see you outside working, I see everything you do with your kids, you must be feeling better?” (Yes- she is a 90 something year old woman who regularly uses Facebook) “No.” I sigh. “I’m not.” I wish I could tell her otherwise. For my sake and for the concern that wrinkles across her face, but I can’t. The truth is – I’ve only found ways to cope.
She finds great comfort in that, and amazement. Which I don’t often get from anyone else. She once called me on the day before Mother Theresa was going to be declared a Saint and told me that she would be praying for me during those moments when she was brought into this classification and told me that if I felt so compelled to pray to Saint Theresa also I might get my own miracle – a relief from the pain – since miracles from saints are more likely to happen when they are named Saints…..these are her words… I am not Catholic. But geez.
She called me. She prayed for me. She thought of ME.
I think she is my own little saint, over there, across the street in the big old house where she raised her kids.
Before I talk about the nitty gritty of why I sat down tonight to write, let me talk about my kitchen floor. It’s not terribly big. One foot by one foot squares of manufactured stone: 7 squares long, 5 squares wide. (I do these sorts of counting games in my head to distract myself, know how far I’ve gone, how much is left to do….)
I know they are manufactured because there is a sinister grin indented in almost all of them. The coloration changes from square to square, but the texture pattern of these tiles, when whatever material was used, was poured in, remained the same. I know my floor is dirty when I can start to see these texture patterns – that sinister smile catching my eye.
Can you see him? Taunting me? He sticks his dirty tongue out at me with all of his filth.
It becomes a game, me scrubbing the dirt from his face. Then I get about half way done. My wrists are burning, my knees have been popping, my back, fingers, neck…everything is in pain. Even counting the squares or faces left can’t distract me.
I think about stopping.
Usually I reach for something else to keep me going, whether it’s remembering my husband’s criticism, anger, clonazapam, or alcohol. Tonight I SnapChatted a friend and we joked about how we were both still working at 9:30 at night on a freaking Saturday. Then I poured myself some gin on the rocks and the burn in my chest was acceptably overpowering to the pain everywhere else. I finished the floor.
Okay, now it’s time for the nitty gritty of why I sat down tonight. I have chronic pain. No body knows why. I have a handful of theories ranging from my father’s exposure to agent orange in Vietnam to the stress I’ve experienced in my life to the Lyme’s disease I had multiple times as a kid growing up out East. But there’s no proof of any of it.
I remember the day my chronic pain came on. I was on a vacation with my husband’s family, my son was less than 2 years old. It was an extremely stressful vacation – even before we left. I was walking around the Creation Museum in Kentucky with my in-laws and I remember my legs hurting way more than ever before. I was carrying my son in a wrap so maybe it was that….No….this was worse. I couldn’t stand. I handed my son off to an eager grandparent and sat down. I could.not.stand. I went to the bathroom to try to collect myself and when I came back my MIL asked me if I was okay. I clearly wasn’t. I exaggerated my monthly cycle and what it was doing to me, got a drink from a vending machine. We left and went out to dinner, then I backed my car in to another car in the parking lot. My brain was not with me. It was the first time I had to split my concentration on everything I had to do with the pain I was experiencing.
Later on I would get lost, blocks from my house. I could not figure out the roads in my head to get from my house to the grocery store – seriously less than 5 miles away. I could no longer understand things spoken to me. I needed to write them down – color code them even. I couldn’t hike, bike, stand on my feet to wash dishes, cook, go up and down the stairs….at time I couldn’t speak clearly…..and I had a 2 year old son and a 7 year old daughter.
I laid on the couch for a good part of a year.
I saw Every Single Specialist and tried Every Single Treatment I could find. No tests came back positive except one for Ehlers Danlos which only partly explains my symptoms and according to every doctor in a two hour radius from me – there was nothing wrong with me. BUT THERE WAS! there had to be….
I wasn’t making this up – Who would want to? This SUCKS.
It’s been a very long journey since then. My son is now 7. I ride my bicycle, motorcycle, hike sometimes, camp in a tent (if there’s an air mattress), garden, do ballet, care for the elderly, maintain my house *to a certain standard, play the piano….
It’s all in your head.
I’ll admit, the first time my psychiatrist said this to me I nearly jumped over his overly large desk to hit him. But I didn’t. And he explained himself.
Everything is in your head.
Let’s say you loose your job, your wife, your car….you are legitimately stressed out and worried. You have every right to be. Let’s say you think about this all the time….how stressed will you feel?
Let’s say you have a pain in your stomach. You think about it day and night….what is going to happen? If it were me I’d end up in the ER eventually. But if you go about your day to day life, find things that make you smile, do things that make you feel accomplished, that pain in your stomach isn’t so bad….it isn’t all consuming….it’s the thoughts that make it that way. Thinking about something all the time will wear you out. It will make it more difficult for you to handle it. It will BE/SEEM worse.
THAT is what he meant by “It’s all in your head”.
Having gone through two natural child births, I know for a fact that I can choose to let that Worst Pain Of My Life completely freak me out – or not. And when I let that pain freak me out it becomes something very very scary. I can understand why women get epidurals or forgo childbirth all together for a cesarean. BUT. If I manage to chill out (which takes A LOT of practice ahead of time) I realize that I can handle it. It becomes not so bad, and I can, actually, get through it.
Now, being the good doctor that he is, he made it very clear that this was all very easy for him to say and extremely difficult for anyone to do. He also made sure to prescribe me prescriptions that would help me along this journey. No – not pain killers….anti-anxiety medication, and sleep medications (I was also suffering from insomnia for over a year when he had prescribed that one) All of that, along with my psychologist who is a good Cognitive Behavioral Therapist helped me get to where I am today.
My CBT and I have had many conversations about how the brain’s pain response is one of the essential parts of survival (for how many thousands of years? don’t ask anyone at The Creation Museum) I had to retrain my brain’s response to pain. Something that had been written into the core of the survival part of the brain that gets passed down from generation to generation. Pain = Bad. Pain = Something is WRONG. Well, for me, as far as we know, there isn’t anything wrong.
At any point we might discover new technology that figures out what is causing my pain and then eventually something that fixes it, but for now, I have to go with this. In my case Pain does not equal Bad. I hope for the day when they figure out what is “wrong” with me – that thing that makes me have pain ALL THE FUCKING TIME. Because then there is a chance for a cure. But for now I have to keep doing what I always do. Remind myself that it’s all in my head. Sleeping doesn’t make it better. Whining and Complaining do not make it better. Tickling my children? Chasing them around the yard? Gardening? Yeah – it might give me more pain the next day, but it feeds my soul happiness, and that – for right now, is the only thing I have to ease my pain.