Every day is a huge challenge for me; something that I seldom talk about or mention. Just getting out of bed takes a lot of effort. I don’t like to write about my pain and various physical “conditions,” as I am not my conditions, I am not an illness, and I am definitely not pain. I don’t like to talk about everything I must do to keep myself moving. But I am. Mainly because I was on the couch all day and had a heck of a lot of time to process. Plus, a little boring never hurt anyone.
There isn’t a moment I don’t feel something askew in my body. Because I am so sensitive, even a hair in my face can irritate me, even cause a rash. My own hair! My nose constantly itches. Sometimes my eyes. All my joints seem to hurt. But I can’t tell if it’s my joints, my muscles, or something else. And neither can the doctors. Right now the couch hurts my bottom. The laptop desk hurts my thighs. And at least ten different areas in my body are either in pain or irritated or itching.
I’ve been diagnosed with at least ten syndromes or illnesses. Nothing is a definite. Nothing truly proven beyond a long list of symptoms. At this point I could have inherited something, suffer as a result of multiple injuries/accidents, been prone to pain from stress or environmental toxins, or made everything up in my head.
Sometimes I like to think everything is in my head. At least I have some control that way. The older I get, the more I realize my whole reality is in my head, anyhow. All my thoughts control my mood. My eyes what I see. My ears what I hear. My brain what I take in, recall, process, judge. I’m sure my spirit plays some part, as well as my second-brain (the intestines), but seriously, so much goes on in my head to begin with.
There are lots of things I have to do in order to function. If I skip any of them, or if something is off, I am pretty much certainly going to be in bed or on the couch for a large period of time. Each day I wake up, I feel like I am preparing for battle: a battle just to survive the day without collapsing in great fatigue and pain.
Here is a list I keep in mind to help manage my days.
1) Shower; something about the hot water on my body rejuvenates me and reduces my muscle pain. If I don’t shower I feel extra greasy and itchy. If I don’t shower, I feel increased pain all day. Problem is, sometimes I’m too tired or fatigued to even think about showering. I have to force myself to. I don’t like showers. They are boring.
2) Pig hormone; for my hypothyroid I have to take a natural pig hormone. I haven’t eaten pork since sixth grade (my decision). So at first the thought of ingesting any part of a pig, felt odd, but then I figured it was the pigs way of paying me back. Pig karma, for not eating them for so long. Trouble is this hormone gives me the skin of a fifteen year old. I appreciate the healthy glow, but the sticky oil and chin breakouts, I could do without. Seems I’ll take longer to get all wrinkly, though. So, I guess that’s a bonus, even though my skin is worse than my teenage sons’.
3) Various supplements; if I go too long without any supplement, I feel it somehow. However, one benefit of being me is that I’m very sensitive to what is happening in my body. In September, it will be two years since I’ve had a cold or flu bug. I can feel a cold coming on. I feel it in every joint in my body, like I’ve been poisoned. Feel it before most people do. And when I do, I load up on Vitamin C and Vitamin D. So far I’ve managed to keep from getting sick. Fingers crossed and knocking on wood. I can tell things about me, too. If my eye sight is growing worse, I need more magnesium. If my leg twitches, I need my multivitamin. If I am tired, I need to take my iron and eat a little fish.
4) Diet; it’s easier for me to list what I can eat, than what I cannot. I can eat nuts, fish, vegetables, and fruit. Everything else gives me some reaction. Chocolate gives me rashes and makes me break out. Dairy gives me rashes. Wheat makes me bloated and depressed. Artificial anything gives me stomach issues. Most foods in general cause me extreme fatigue immediately after eating. If I am going to eat, I usually have a small portion of salad. Grains are going to make me tired. Wine hurts the salivary glands in my neck. Beer gives me a stomach ache. I am definitely high-maintenance. If I am not careful, after a meal, I will be in pain and fatigued, and have to take a nap.
5) Liquid; I need to have lots of water and green tea. The green tea gives me the boost to function in the morning and alleviates my chronic fatigue. Green tea also lessens my pain. If I have coffee I go into a spastic mode. If I want to clean I have a quarter cup of coffee in the morning. If I drink coffee I will be up past midnight and have lots of cool ideas, or what seem to be cool ideas, but are really elaborated ramblings that don’t prove much of a point. Coffee makes me paranoid, worried, and stressed. Oh, and agitated.
6) Exercise and movement; I have to move. Once I sit down, it is very hard for me to get back up. Especially if I combine eating in the morning with sitting on the couch. And forget it if I eat, sit on the couch, and skip my shower—I’m pretty much down for the count on those days. If I walk my serotonin levels increase and my mood is better. Everything is brighter. If I walk far, lately five to seven miles in a day, it is easier for me to sleep deeply at night. Fatigue sets in badly about 3:00 pm, so if I can walk then, sometimes a second walk, I can keep from sliding into the unable-to-move zone.
7) Weather; if there is a lot of barometric pressure from clouds then I have a hard time moving. Also, if it is chilly, my bones ache. At least it feels like my bones ache. On cloudy days (most days in Washington) I need to make sure I take care of myself; if I do not, I will not function. On cold days the far infrared sauna is helpful. But sometimes I am too fatigued to go into the sauna. The thought of having to undress, shower, and then dress again seems overwhelming. I worry about how I will keep up my walking with the end of summer coming. I have to find ways to exercise. We have an indoor treadmill which I avoid. And a stationary bike I haven’t made friends with, either.
8) Sleep; if I do not get enough sleep, I will have increased pain and fatigue two days following. If my sleep is interrupted and/or not restful, the next days will be harder for me to move. I am sensitive at night. I need a special mattress for my body to feel comfortable, must wear long sleeves and long pants, regardless of the weather, or I itch, and need to use earplugs. All noises bother me. Particularly banging, high pitched noise, the ticking of clocks, water of a fish tank, voices, television, and snoring.
9) Stress; if my stress level is medium to high, I will have instant pain. People’s moods affect my pain. Screaming, whining, loud noises, yelling, fighting, and the like increase my pain. Unwelcomed news increases my stress. Lies are a big trigger for me.
10) Thoughts; if something is out of the ordinary, if plans get changed suddenly, if I notice something on someone’s body that is out of the ordinary, then my thoughts may overwhelm me to the point of exhaustion. My thoughts can trigger sudden onset of pain. When something I am looking forward to is suddenly canceled I am fine. But when something happens I wasn’t expecting, no matter how pleasant, I can get overwhelmed. Skin “issues” are a big trigger for me. I have an odd rash around my eye. I worried and fretted today about my eye, and collapsed on the couch from fatigue. I catastrophize in my mind, thinking of worse case scenarios. My sons have mosquito bites all over them from one hungry house bug we’ve yet to catch. And my chin is breaking out from that pig hormone. All this increases my thoughts.
11) PMS; oh yes, the lovely word. The five days of hell for me. All my pain increases, fatigue doubles, negative thoughts increase, and basically I think the whole world hates me. My face and stomach swell up and I look and feel like the Pillsbury Dough Boy. This makes it harder for me to leave the house and exercise, which can lead to further fatigue and bring on depression. You’ll notice I do not post photos of me during this time. I also get cravings for chocolate! Not something I should really be eating.
12) Chemicals; I have to avoid all chemicals in products and makeups. Thus the frizzy hair and minimal makeup. I get instant pain from inhaling chemicals in all forms. I have to avoid places with new carpet, paint, flooring, or other odors. Plastic smells are the worse.
13) Information; I have to be careful what I read or watch. News or a film can deeply affect my mood, which triggers…you guessed it…my pain. People close to me have learned not to share sad news that doesn’t directly affect me. Some visuals I’ll never be able to get out of my mind.
14) Noise; certain genres of music physically hurt my body. Dogs barking hurts my ears. Loud cars, especially motorcycles hurt. Too many people talking all at once, large gatherings with lots of conversations at the same time, all cause me trouble. Noise can affect me for the entire day, and may mean I have to stay inside the next day to recuperate.
15) People; people affect me in all sorts of ways: their mood, their appearance, their smell, their mannerisms, voice, attitude, energy-level, facial expressions, spoken words. If my feelings get hurt, which happens more times than I’d care to ever admit, then I typically will feel pain somewhere in my body. If a person is sick, I might get phantom symptoms, even if I don’t know they are sick. If a person is happy or sad, I might start to feel that same way.
16) Dread; if I am dreading something, particularly medical news, doctor appointments, or an upcoming outing, I will have trouble concentrating and relaxing. I will loop in my mind and spin in my thoughts. This will cause tension in my body, which leads to other problems. I have to get blood tests done about every six months to check my vitamin, protein, iron, and hormone levels. The thought of annual or biannual appointments for anything, sets me into a mini-panic.
So that’s my boring list.
This is boring.
This is pain.
Great movie Sliding Doors to watch when you are stuck on a couch!
And dang if that mosquito didn’t just buzz in my ear!!!
For day 200 I couldn’t think of anything better than James Blunt singing and stripping! Now that’s hot (and snowy cold).
A fictional piece of writing based on emotions of the past.
Goodbye Sunshine
There were small dresses hovering above. Light spilled in through the bottom of the closet door in the shape of a crescent moon. From where I sat, I let the moon kiss the back of my hand. Then I stretched my hand through the narrow crack beneath the door and wiggled my tiny fingers in the space outside the darkness. After counting to three, I pulled my hand back and returned it to the thick warmth of my dog’s fur.
An hour earlier, draped in my yellow shooting-star-patterned nightgown, I head reached across the dining table, and said, “One plate for you handsome Mr. Thumper and one for you dashing Blue Pony.” My animals stared back at me and smiled then, Pony resting on his side in the side chair, because he kept falling down with his bad balance, and Thumper on his tail with his paws on the table. “No arms on the table,” I said, and placed Thumper on his rump. “That’s better. Did you wash your hands?” They nodded. “Did you say grace?” They nodded again. “Good,” I praised, picking up my red plastic piggybank from my chair and taking a seat.
“Good job,” Mother said, as she walked in through the kitchen door. She plopped down a platter of cold meatloaf and a blue bowl of buttered potatoes, and then lit up four candles.
I held my plastic piggybank up to my ear. “What’s that? Let me see.” I looked up. “He wants to know if he can come to the sitter’s on Monday.”
Everyday Asperger's 