You know that thin veneer of socially acceptable behavior we all wear throughout our days and nights? That veneer that keeps us from tossing our wine onto the shirtfront of the idiot at the cocktail party who insists on cloaking his misogynistic ramblings under the heading of “devil’s advocate”?
Some might call it self-control.
Well spoonies have masterful self-control. We maintain it with an iron fist when we are out of the house because chronic pain creates an inner voice that is almost always an asshole or a whiny bitch.
So we shut the fuck up and do our best to ignore the urge to burst into tears at the slightest inconvenience or collapse into a puddle of completely broken human being-ness as we give in to our pain and finally, at last, stop trying to pretend it hasn’t rendered us animals.
Well today my self-control decided to fly off to Katmandu for some sightseeing and I got a glimpse at the monster that lives in the depths of my soul.
Maybe it’s my medication. It’s possible that my inner voice is altered by the ugly addition of Lyrica. I’d like to be able to blame the handful of mind altering substances I pour down my throat twice a day. If not, my inner voice is a manic, terrified, angry, sick-and-tired-0f-the-pain, psychopath who wants to throw up my hands, crawl into bed, and never get up again. Ever.
With my self-control on vacation in the Adirondacks my inner voice is screaming: FUCK THIS CHRONIC PAIN SHIT. I GIVE UP!! IT’S TOO MUCH. MAKE IT GO AWAY OR MAKE ME GO AWAY OR INVENT SOMETHING THAT MAKES ME NOT CARE ABOUT IT.
Because it is too much. It’s too much. I am forty years old and I actually believe that today’s life expectancies are too. fucking. high. I don’t want to feel like this for another forty years. I don’t really want to wake up in the kind of pain that makes me uncertain I can get out of bed every day for another fourteen thousand six hundred days. That is too much of ask of me. It’s too much to ask of anyone!
It’s complete and utter unfair bullshit. It’s the kind of bullshit that makes me want to walk through my house slugging wine, pulling things off of shelves and throwing them against the walls. It makes me want to take a walk of complete destruction wear I inflict the pain I live with on every inanimate object in sight.
Why don’t I? Because then my fucking self-control would come back from helping orphans in Africa and I would have to clean it all up. Which would make me hurt more. Which is, again, fucking bullshit.
So why today? What is it about today that made my self-control hop onto the back of a bird and fly off to Borneo? My dreams.
Here is the story: I don’t sleep well. I never really have. So one of my many doctors discovered I clench my teeth like life depends on it all night long. He prescribes a night guard. I start wearing it. I sleep. I sleep well enough that I begin to dream.
Night after night I dream these freakishly intricate dreams about me as different people in different times. One night it’s a burlesque dancer who did the USO circuit in the 1940’s. Another night I’m a nurse who treats victims of Agent Orange. It’s different every night.
Two things about the dreams remain the same. One, I am always someone dealing with something that causes intense PTSD. Two, I always reach a point in each dream when I start to cry so hard I can no longer speak, even when I desperately want to.
I dream every night about desperately needing to speak about my pain and being rendered physically unable to do so.
Every morning I wake up tense and afraid. I lie in bed and think about how fucked up the most recent dream was as I feel my consciousness return to my body and the pain filter in. It’s like putting on clothes. Pain in my feet, arms, hands, head. Stiffness in my back so bad I am not sure I can move.
I lie in bed as my body puts my pain on and I gather my self-control and my intention to make it through another day. To make something beautiful in that day. To love and to be loved. To feel the wind and the sun and the rain and to remember all the reasons I should do it all again tomorrow.
Today I needed someone else to take me to tomorrow. Today my inner monster was loud enough to make me give up. Today Dan came into my dark, dank, cave of bad feelings and despair and he held me there. He let me cry and listened as I shared my dreams and this sense that no matter how much work I do this is my life going forward and it has so much suck in it. He didn’t try to talk me out of my feelings or point out the good. He just held me. He listened. He took me for a walk. He got me out of the house. He helped me make a delicious dinner and ate with me while we snuggled and watched Game of Thrones.
When I was done my self-control was back. My desire to see another tomorrow, despite the pain that will inevitably come with it, was once again strong. My monster in the depths was once again locked away.
So if it is strong again why am I writing this?
Because your monster may not be. You might be hearing it tell you all the awful you have ahead of you.
Well, it’s right. You have a lot of awful ahead of you. You have pain and medication and doctor’s visits and missed opportunities and the feeling that you have to remain silent about it all.
You also have those things that make your day wonderful. That person who really sees you and still loves you. That animal that curls up next to you when you can’t get out of bed. That show you really want to see the end of.
So let your monster scream. Let the unfairness of it all come out for a bit. Cry.
Then shake it off, lock your monster away, and begin again. You have a long fight ahead of you but you are not alone.
Evening came and went and whilst my love was sleeping the creativity I sought all day long surfaced in a rush. Sleep became impossible and I gave up trying when evening turned to night. In the quiet darkness of my house I crept to my desk and turned sleepless discomfort into shiny things. I found comfort in the act of shaping metal and pairing stone.
The work is quiet and takes little physical energy, though it can often leave me exhausted if I do too much. I find sleep again after a few pieces are finished, my former restlessness replaced with satisfaction.
One of the hardest things for me to do is manage multiple days of activity. I usually need a day or two of rest between super busy days or I need to do only one little thing each day that drains my spoons and rest to save up for the next day. Of course knowing this doesn’t stop me from occasionally over-scheduling and looking at a coming week with activities and events every day and night. I am not the best at time management yet and I am even worse at turning down opportunities to see people I miss or do fun things.
This week had a lot of activities. They were wonderful activities and I enjoyed them but by Friday I was paying for my spoon spending excesses. My headache was so painful I thought I might have to go to the ER even though I know there isn’t much they could do other than shoot me full of drugs, even though the ER usually makes me feel worse due to the bright florescent lighting and loud noises. (Especially all the beeping machines. I hate beeping machines.)
I regretted my mismanagement of spoons because it meant I had to skip seeing Sweeny Todd with Dan. I have the hardest time canceling on events, especially when we had to pay money for tickets. I felt so horrible that we were not going to be able to go to this event we both wanted to attend so badly. I cried for the better part of an hour and tried desperately to summon a few extra spoons so I could make it but going simply wasn’t going to happen. I was curled up in tears in my bedroom because it hurt so much to simply exist that I kind of didn’t want to do that anymore much less anything as complicated as putting on fancy pants and going to a musical.
Dan is wonderful about these things. He offered me nothing but love when I told him we would have to cancel our plans. With teary eyes I told him how sorry I was to disappoint him and he replied with “I’m not disappointed, I’ve got the girl.” He brought me ice and helped turn the evening into low key time together. I am envious of his ability to remain calm and accepting. I felt like a sullen child who is told their playdate canceled due to flu, unwilling to accept the loss of my fun with aplomb and instead pouting in furious but ineffective mutiny.
I’ve learned that his boundless acceptance of my limitations is the most amazing gift on Earth. He never makes me feel that my chronic illness is my fault, or that there is something I should be working harder at. He always treats it like something that we need to work through together, something that is part of me and is somehow therefore precious. I have no idea how he manages to have so much patience when I still rail against my limitations but I am desperately trying to learn from his example.
Today I am still suffering the aftershocks of so much activity. My headache is forcing itself into my thoughts and activities with wild abandon, making concentration and focus difficult. I shall have to rest a goodly portion of the day and start picking my scattered spoons back up off the floor.
It’s a constant lesson in self-acceptance and self-forgiveness, this daily struggle with chronic pain. I desperately want to be the superhero I now realize I once was but I am learning to accept the me who is shouldered with this burden. I am starting to see that I still do amazing things, even though I times when I can’t do much of anything, and I am hopeful I will start to feel as fulfilled working within my limitations as I did before they arrived.
It’s a difficult balance to strike. Most of us don’t realize our energy really isn’t boundless until our bodies force us to set limits on our ambitions. I know I thought I would have far more time to do everything I wanted than I have. I never gave a thought to not being able to work full time, parent full time, partner full time, have a dazzling social life, and donate oodles of time to charities that matter. Now I am impressed with myself if I can shower, make and eat food, put on pants, and do something in addition to these basic life skills. (Grocery shopping for the win!)
So today I will rest and borrow some patience and forgiveness from my husband until I can find it within myself. I will enjoy the sound of birds outside my window, the feel of the cat in my lap, and the warmth of the dog by my side. I will gather up my spoons and ready them for another attempt on the outside world, an attempt I will make another day.
I understand exactly how she felt.
The doctors don’t know what causes my headaches. I spent 12 days in the best hospital in the nation for headache treatment and we are no closer to knowing why I get them. Is it hormones? Stress? Food? Nighttime teeth clenching? Pressure changes? All of the above?
I lost four months to my headaches when they were at their worst. Four months of not working, not going much of anywhere. Four months of distance in friend groups and business relationships. Four months of earning no income, not volunteering, and generally not being me.
Now I am better, kind of. I am back to work a few hours a week. I am up to camping for a few days at a time and able to table an event here and there. I can contribute. However, I walk around on tenterhooks, uncertain whether or not I am going to be able to continue this pace or if I will suddenly turn bad enough to have to stop working for four months and spend another 2 weeks in the hospital. I live under the possibility that one day my own bell jar will descend again.
I don’t drive much precisely because I never know if, once I have gotten somewhere, I will feel well enough to drive back. Will I get to a restaurant to meet a friend only to have to send someone for my car in the morning because my headache upped it’s game and rendered driving impossible or will I be able to be out for two hours without any negative consequences?
This past week is a perfect example. I felt great. I gardened, I cleaned, I cooked. I spent time with the kids. Then the 4th of July hit. Suddenly I had to cancel my original plans and find another way to celebrate. I took medication and saw the doctor and this morning it was a little better. Then this afternoon it got worse. I spent the rest of the day generally in bed resting waiting for it to calm the hell down.
Three not so great headache days in a row and I am facing the fear that I will fall back into that hellish place I awoke to in January.
I have lowered my work load and pruned my volunteer efforts. I chose two organizations to stay working with and dropped everything else. I can handle a couple days of work a week. I have to try to succeed at this. If I give up and just wait for the problem to go away I will spend forever waiting.
I take my medication and see my doctors. I eat right and exercise. I sleep. I have built in rest periods in my week to replenish my energy levels. I am doing what I can to make this work.
I just wish there was a way to do it without having that bell jar hanging over my head.
Hatchet told me I am a collapsing star. When I feel well I expand out into the universe, reaching out to everyone in my life and pulling them to me with energy and excitement, questions and concern.
When I am hurting and scared I pull inward, hide inside myself. I don’t reach out to anyone, and I find myself lonely and afraid in a dark pool of my own making.
When I am hurting, I don’t want to reach out and ask for help. I know I can’t expect my friends and loved ones to know I am hurting. They have lives going on, things that demand their attention with the loud energetic voices used by stars who aren’t collapsing in upon themselves. They are also likely quiet tired of me being in this state. It has been years since I could answer the question “How are you?” with “I am great.”
My voice has grown quiet. Literally. It actually hurts for me to speak up. I noticed this last night at coffee as I tried to join in the conversation of my friends. I lack the ability to do so. My voice cannot be made loud enough to break into the bustle of lively conversation without causing me significant discomfort. That realization has driven me deeper within myself today. Even when I am included, even when they reach out, I am isolated.
Today I am in my sanctuary. As Dan is still mid process of moving in things are scattered about and it is not the calm cave of peace it normally it. However, it is mine, it is whole, it is quiet. It has my cat and the dog. There is warmth and subtle light.
I have set my healing schedule. I will walk once a day, long walks. Far distances with or without people and pets. I will walk to improve my health. I will study and read to improve my mind. I will wait for the medication to improve my head. I will make all my doctor’s appointments. Cardiologists, Neurologists, Anesthesiologists, etc. I will call the clinics and insurance people. I will keep up with my laundry and chores. I will cook and eat healthy meals.
When my children are home I will read with them or play games with them. I will spend time each day focused on each of them. I will carve that out.
I will save the dark hours of the night for despair. The hours when the pain wakes me up or prevents me from sleeping. The hours when I become certain my life will not improve beyond these small accomplishments. Despair best suits the night time. The darkness helps it settle into your bones. The morning always brings with it a little hope and a renewed dedication of purpose.
As scared as I am to attend this pain clinic, I hope it gives me back my voice. I hope I come home with the tools I need to manage this lifelong disability so I can stop being a collapsing star and once again reach out to the people I love with excitement, exuberance, and joy.
The day began as they often do, with a migraine and a moan. Today I grabbed my D.H.E. injection and headed downstairs to shoot away the pain and get started with my morning so I could walk into work and enjoy the sunshine.
By 11:30 it became clear walking wasn’t going to happen. The headache was gone but I was feeling weak and shaky from the shot. Still, headache gone, time to go to work. Dad dropped me off at noon and I said hello to the office for the first time in several days.
Then about half an hour later I began to experience chest pains.
Not again, I thought.
You see last week I missed work because I spent Monday in the E.R. with chest pains which started 12 hours after taking my D.H.E.
Calmly I wrote down the time they started and when I took the medication and began trying to work again. Then I began to feel a sensation of pain move down my left arm and into my hand, and my arm went numb. I marked the time and the sensation and called my doctor. No answer. I went back to work. About fifteen minutes later I started feeling hot and clammy and my hands began to perspire. Shit. I called my doctor, marked the time, made notes. No answer. I went back to work. A bit later I began to feel nauseated. I called my mother.
Which is how I ended up in the back of an ambulance on my way to the ER for the second time in one week. My mother wisely suggested, and then ordered me to call 911 for an ambulance. I called and they were there fast. I was impressed. I barely had time to alert my co-workers to the fact that I would be leaving for the day, much less that four paramedics and two EMT’s were about to swarm the building and cart me off on a gurney.
I was rather embarrassed, honestly. I prefer my illness to be more private than that.
Once in the ambulance I got aspirin and Nitro, and off we went to St. Joe’s for the tender mercies of the day staff. They were wonderful. They took every possible test and precaution and sent me home with the admonishment to never again take D.H.E.
Apparently it caused vascular spasms in me, resulting in decreased blood flow to my heart that was painful, but not damaging in the same way a heart attack was. However, there were clear that there was no good to be had in continuing to take it. I have to agree as the triponin test I took last week at the E.R. was 0.00 and this week’s was 0.015, it seems there is a slight increase in enzymes associated with heart attack. I want to stop this ride while my numbers are in the “still negative” for heart attack range instead of waiting to see if I can raise them any further.
So tonight it’s cookies, tea, and sleep. And OK, a little weep. After years of not finding a solution to my migraines I am upset that the one drug that seemed the most promising tried to kill me in other ways. I was so hopeful for this one. (Damn homicidal medications!)