Chronic pain has changed my life; I’m a much bigger asshole than I used to be. I mean, I’ve gone from a zero to about a seven on the asshole scale in a very short amount of time, and here is why: I only have so much energy to give, and I need it all to be directly focused and only focused on the things I need to get by. Not what you need or what they need. What I need. And that is pretty much as asshole as you can get.
There is this thing going around the chronically awesome circles called Spoon Theory. It is epicly awesome and amazing and really, truly, finally explains chronic illness to the masses. But some people still don’t get it, and I think I know how to solve this problem.
Spoons will now be knowns as fucks. I have no extra fucks to give. Not to you, you, or you. No fucks will be given. None. You think I might give a fuck? You are wrong, my friend. Wrong. Fibromaniac has no fucks to give, so keep on moving.
Does it make more sense now?
Yes I’m mainly joking, but it amazes and frustrates me to realize how many people breeze through my day making more work for me or expecting me to be able to do more than I can. I know they just don’t understand that if I do this simple task for them I will have cashed in a chip that I really needed to use for something else – like showering, or preparing a meal. But I want them to understand. I really really do. The chronic asshole in me says “Just forget about whether they understand and do what you need to do.” And that is where I have been functioning for a while now, in asshole land.
I know. All this asshole stuff is just a joke, right? I don’t think so. Let me tell you about when I recently stayed with my sister for two days and realized how much I have changed. Little things that never would have bothered me, things that I do or have set up in a certain way… I really saw myself for the first time in a long time, and I barely recognised myself. Because I was an asshole.
The first thing I noticed was how my chronic pain had sucked the joy out of connecting with children. I used to run and spin and tumble with them; now I just sit and watch because they are energy hogs and I need all the energy I have. Seriously, you make eye contact with one and you are worn out. But avoiding or disconnecting from my son and my nieces doesn’t make me very happy, so I had a glass of wine, which seriously helps calm my nervous system, and decided to engage in the most beautiful way I could think of without hurting myself. I ended up beneath a weeping willow tree, resting in a lawn chair, smack dab in the middle of their playing. Later I organized a driveway obstacle course and rendered chalk drawings of them all. I felt in control and connected – I gave of myself beautifully without hurting myself, and it was simply wonderful. Totally not assholey.
Later that night, though, I began getting irritable. The temperature in the house was too warm. Storms were slowly on their way causing me to ache and ache. I couldn’t get comfortable on my sister’s furniture and there was a severe shortage of pillows and blankets. I needed fresh air but my brother in law preferred the ac. I wanted to enjoy the blacony breeze, but my legs had begun to swell making the balcony furniture excrutiatingly uncomfortable. I finally gave up got my ass to sleep.
The next morning I realized how dependant on my routines and organization (ha!) I had become. My sister dropped the bomb on me that we were leaving in a mere thirty minutes. I hate when people do this! Tell me what time the day before, don’t drop it on me with no time for me to prepare!! I get very flustered because bathing and grooming take a lot out of me and if I have to do it in a rush it takes even more out of me. Thankfully, though, I am the master of the ten minute get ready, so I happily jumped in her shower and got started…
Only to not be able to locate the hair conditioner.
I can’t really eplain what this does to me. I have a flow, a routine, that has to keep so I don’t lose my momentum. I have everything just so… so that it could all be done with my eyes closed. Conditioner goes next to the shampoo. First you shampoo, then you condition, then you wash the rest of you while the conditioning is taking place, then you rinse off errthang. I spent so much time and energy locating the damn conditioner! My wonderful sister heard all the jumbling and searching and came in to point out the jar of conditioner on the window sill, but I was already frustrated and out of sync, and also very aware that no normal person would have this reaction.
But I’m not normal.
So I carry on with my routine only to not be able to locate a wide toothed comb.
Seriously?? Where the fuck is everything?! At this point I am taking deep breaths and trying to remain calm as my sister kindly goes on a hunt for me, all the while cursing myself for not bringing my own. I keep trying to convince myself that it is not that big of a deal but my body says otherwise. My body says it has no energy for this shit and had it known it would have been this difficult it would have never even bothered to have me wash it’s hair.
A comb is located and everyone is ready to go, except me. MY SUNGLASSES ARE MISSING. Seriously.
I have extremely high and full cheeks with a very shallow nose, so as much as my sister and I may look alike this one major difference keeps me from being able to wear any of her sunglasses. They will simply sit on my cheeks, cut into them, leave sweat puddles and red marks… it is NOT comfortable to wear anyone else’s sunglasses but my own. My sunglasses are also fully collapseable so that I do not have to carry a larger purse to put them in when I don’t want to wear them. See? Are you reading this? This is the definition of asshole. It is a picture of ME and my colllapseable sunglasses. That are missing. Which sends me into a flare from the extra physical effort and mental anguish of searching for them and NOT finding them, and having to wear sunglasses that don’t fit right or feel right AND having to worry about how to replace the sunglasses I lost…
I take a moment to ask myself, “Is this beautiful?” My answer is “No,” so I stop worrying that instant, get in the car, and get on with my day.
Once back at my sister’s, more issues for me to work around – no where to set my glass, another struggle to get comfortable, no extra pain meds with me. This is where I noticed how exact my life is, my home is, and how far I have fallen down the chronically awesome rabbit hole.
Once home, I nearly kissed everything. A place for all my things (a pile is a place) , blankets and pillow abound, open windows and fans… and the pile of dishes and full cat iter box. Ugh. But I was home, and I needed to be home.
Next time I set out, I will pack even better than I already do – I always have several sets of clothing options for all the varriance of my body temperature fluctuations as well as an array of stretchy fabrics for if/when I swell or start having texture or pressure issues. Next time I will pack a comb, shampoo and conditioner, and a blanket. I am the world’s best and quickest packer, but I guess there is always room for improvement.
Oh, I did find my sunglasses. They were beneath the weeping willow tree. I found them when I returned to spend more time with the children, after I had given up my unbeautiful obsession with finding them.
So the point is that I’m a selfish, picky, jerk these days because if I’m not I suffer more. Little things bother me because I know I’m spending precious energy on bullshit. It is freeing to give up the concern for others, but there will always be people that I love that I will sacrifice for no matter what – my family. And I’d rather be irritated and in a flare hanging with my sister than alone at home any day.
Guess I’m not that big of an asshole afterall.