There is something I have explicitly been trying to avoid talking about in entries of late, and that is my physical illness(es). I do not want to whine or complain, and nobody likes to hear about how sick you always are, so I try to not talk about it anymore. This has its benefits and its drawbacks.
Its benefits are that people are relieved, no longer get uncomfortable and have to search for a way to respond, usually just mumbling a sort of \”god, that sucks, I\’m sorry, uh… isn\’t there anything you can do to make it stop?\” Another benefit is people stop fawning all over me, making a big deal out of or drawing attention to my disability, or feeling sorry for me — things I despise.
Its drawbacks are that people quickly forget why I am the way that I am. \”What do you mean, you can\’t come out?\” \”Why can you only come out one night a week?\” \”Why do you suddenly have to sit down?\” \”Why are you in pain?\” \”Why do you have to go to bed?\” \”Why can\’t you just sleep on my couch?\” \”Why can\’t you just skip your medication just once?\”
And then it gets even worse, into the territory of things I clearly cannot do. \”Let\’s roadtrip across the country.\” \”Let\’s go to an all night party.\” \”Let\’s go skiing.\” \”Let\’s go bowling.\” \”Let\’s go see a four hour play in a theatre.\” \”Let\’s go to a club where there\’s no seating, not even at the bar.\”
Then, the worst of all are the ones I have not learned how to fend off yet. \”Why can\’t you just get a job?\” \”Why are you on disability?\” \”You don\’t look disabled.\” \”You don\’t look sick.\” \”You\’re just lazy.\” \”You\’re just making excuses.\” \”You\’re making it all up.\” \”There\’s nothing wrong with you.\” \”You could really work if you wanted to.\” \”If you can\’t work, why can you come out to a bar?\”
Yeah. There are benefits and drawbacks.
So let me tell you something about pain, and disability, and then I will be done with it, at least for this go round.
One of my illnesses is called fibromyalgia. Pronounced FIE-bro-my-AL-jia. Yeah, I mispronounced it a lot at first, too. Anyway, the name is deceiving; like CFIDS, it was misnamed. \”Fibro\” means tendons and ligaments, \”myo,\” means muscle and \”algia\” is the Greek word from pain. Fibromyalgia.
The name is a misnomer, because while the illness makes your tendons, muscles and ligaments hurt like bloody hell in most patients, the illness is actually one of the central-nervous system. I used to tell people that it was a musculoskeletal disorder, but apparently I got that information from a bad source (ahem, my doctor) because what I have read since says that is incorrect.
Fibromyalgia is not a musculoskeletal disorder. It should have been called \”Central Nervous System-myalgia\”. That is where the dysfunction is located. It has nothing to do with the fibers of your muscles. In FMS, muscle fibers are not causing the problem, although there may be cellular changes caused by the biochemical FMS dysfunction. Fibromyalgia is a biochemical disorder, and these biochemicals affect the whole body. (Starlanyl, Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, p.7)
Also, fibromylagia is actually a syndrome, and not a disease… but sometimes, well, I refer to it as a disease because people understand that better. \”Diseases have known causes and well-understood mechanisms for producing symptoms. A syndrome is a specific set of signs and symptoms that occur together. Rheumatoid arthritis, lupus, and many other serious conditions are also classified as syndromes.\” (Starlanyl, p.8) I have found that people accept \”disease\” as something serious whereas \”syndrome\” seems to be something akin to a passing phase.
People also do not understand \”a central nervous system problem\” when you are sitting on the floor with your legs quaking but you insist that you are okay to drive, so it is much easier to say you have \”a muscle disease\” than admit to a \”central nervous system syndrome\”. Granted, it only sunk into my head that it was a CNS thing on Christmas day (previously I kept confusing it with my CFIDS\’s immune system thing), and it was also on Christmas day that I learned it was a syndrome and not a disease. I think. I may have read that before and it had not sunk in; that happens a lot. Memory is one of the things FMS effects. Hey, there we go — it is fibromyalgia syndrome after all. That should have been one of my first clues.
Well, the damage has been done. Saying I have a disease instead of a syndrome and saying it is of the muscles instead of the central nervous system and saying that I am doing okay when I really feel like shit and wish I was in bed are just some of the little white lies I tell in order to manage my illnesses on a day to day basis. I thought things were supposed to get easier upon getting diagnosed and starting treatment, but they have only been getting harder and harder.
Which brings me back to the initial issue: pain.
People say to me, \”Oh Cassandra, you look great. How are you doing? Let\’s go out!\” I want to tell them to put a motherfucking sock in it and blow a kiss at my god damn ass, because if they actually kissed it right now, I would have to refrain from hitting them.
For the past month — no, it has been longer now, because this started the week after Thanksgiving, just out of the blue, out of nowhere, wham-o, bam-o, suck my fucking cock, let\’s hit her where it\’ll most fuck her up, boys! — I have had tension knots the size of tennis balls in my ass. Maybe you did not hear me correctly. IN MY ASS, MOTHERFUCKER.
Let\’s have an anatomy lesson, shall we? \”The thigh bone\’s connected to the… pelvic bone! The pelvic bone\’s connected to the…\” well it should be connecting with a hell of a lot of boning, but guess what, folks? It is not, it just is not these days, because the damn thing is in too much fucking pain. Exploring the length of the femur and the lower region of the pelvis, and you will see what I mean.
The femur is your thigh bone — say hello to the longest bone in your body. Up at the very top of that bone is where the femur connects (joins) with the pelvic bone. The top of the bone is rounded into a ball, and is called the head of the femur. It fits into a socket at your pelvic bone to form your hip joint. Below the head, the bone has a sort of neck and two large processes: the upper lateral called the greater trochanter, and the lower medial called the lesser trochanter. The processes are where the muscles of the legs and ass attach. Well, baby, right there, right motherfucking there, on both femurs, I have developed the trigger points from hell.
Another of my illnesses is called chronic myofascial pain. CMP is a condition throughout the body that causes a great deal of pain, to put it simply. Myofascia is the sticky white film that covers some parts of mammal\’s bodies; you can see it on chickens when you buy them at the store, if you do that sort of thing. Myofascia is what gives shape to and supports the entirety of the body\’s musculature. Everything is held together by this little white film — your organs, your muscles, your bones, your tissues — everything.
Now imagine that there are three layers to your fascia, remebering that all of it is continuous and therefore is just one big piece of white sticky film. The layer attached to the underside of the skin is called superficial fascia. In that layer are the capillary channels and lymph vessels, as well as many nerves, and the subcutaneous fat that is attached to it.
In people whose superficial fascia is healthy, the skin moves fluidly over the skin in their muscles. In people with fibromyalgia and chronic myofascial pain, that layer of skin is often stuck, leading to a great potential to store excess fluid and metabolites, which are the breakdown products of all the informational substances and other chemicals in the body. When all that nasty stuff backs up, the fascia gets stuck moreso, causing pain. These back-ups are called trigger points.
A trigger point is a small area along a muscle where tension builds up and localizes, distorting the muscle fibers. After a while a contraction knot can form, as well as a ropy, taut band. Left untreated, in severe cases these can develop overnight into huge inflammations. As was the case with my ass.
May I suggest something? Get naked. Take two golf balls. Masking tape them (duct tape allows too much padding) to your ass, directly over the top of your femur. Now go try to sit down. Keep those balls there and live your life for a month. Comfy, ain\’t it?
Trigger points I have had. Trigger points in my ass, well, my god. And it is not just one, no, Andrew Eldritch (who, if you remember from your days in the goth scene, is God) could not stop there. I have two trigger points in the piriformis, which is the muscle that goes along the top of the femur to the spine. The trigger points are right over the pelvic bone, and right at the spine, so every time I move, I feel it. Then I have actual trigger points in my ass — yes, in my gluteus maximus, and believe me, there is enough to grab hold of there in my size 10 ghetto booty to make me glad I am no longer a 16 but wish to christ I was down to a 1 for more than body image reasons — the locations of which I cannot even begin to describe, so just look at the graphics.
As if that were not enough, wait there is more! My body is rebelling! It is saying, Cassandra, you damn alkie! You damn fucking crazy girl! Treat me right or I will treat you wrong, and here\’s how! And it is showing me just how wrong. These other trigger points, god… they are in what is called the gluteus minimus, which I had never heard of, either, until this went down. It is the side of your ass above your hips and below your love handles, the part I am always trying to firm up/shrink and never seem to succeed at.
Well, this little muscle is at the top of the femur, on the outside, and it decided to exact its revenge on me for disliking the way it looks and never having known its name. It unleashed seven unbelievably painful trigger points. Looking at the graphic, you would not think those little x\’s are a big deal, but you see all those shaded regions? The shaded regions are all the places the little x\’s send pain to.
From my lower back down, I feel like Mike Tyson\’s girl friend. Except I am thinking she probably has a Brazilian wax job, and well, I am more of a home shaved kind of gal. I be po\’. But we share the pain. And the bruises.
Yeah, the bruises. I do not like taking my clothes off around my friends at this point, because the outsides of my upper legs are speckled with bruises. The bruises are from physical therapy. The physical therapy is supposed to be helping. The key word is \’supposed.\’
Instead, what it is doing is making me question why I ever sexualized pain in the first place.
I have a high threshold for pain. I get off on certain amounts and certain types of pain. I like my sex with pain (I also like my sex without pain; I just like my sex). What they are doing to me in physical therapy, however, has been almost unbearable.
A doctor once asked me to divise a scale on one to ten of how bad the pain is I have ever experienced in my sickness and injuries, ten being the worst. An average day in the past few years sees me at a four, though this past winter it has been at a five or six. A seven is fairly high up there and signifies to me that I need to stay at home, only venturing out for a doctor\’s appointment. An eight means I need to take some emergency measures, like popping my back, taking a scalding shower and then freezing my self out with Biofreeze, taking more than the recommended dosage of painkillers, doing the emergency stretches if I can, and pacing. A nine sees me unable to move my arms, neck or legs more than a few inches and fighting back tears, so I get someone to rub me down with Biofreeze if someone is around, swallow some painkillers and three sleeping pills, and pray for the best. A ten would be me screaming and crying if it did not hurt that much more to do so, instead my eyes well up and I cannot move to do anything about the tears. After a while, I pass out, and I pray I am already in a horizontal position when this happens.
I have had localized ten pain a few times, but general (full body) ten pain a little under a dozen times. I have reached nine more than a dozen times, at least half of which have been this past fall/winter, so it has been a bad season so far.
Since this bad wave hit my ass (literally, as it were) a little more than a month ago, I have given up sex. Not just kinky sex, mind you, but all sex in general. The logic to this goes down many paths, and I am only going to explore one here at this present time. I have been in so much pain that I have not been able to subject myself to any extra stimulus, nor work up the effort to inflict that stimulus on anyone else. I used to be able to eroticize some forms of pain, to consider the intricacies of the right pressures exquistely gratifying in all their hidden appeal, but of late pain started to look like something I wanted to run away from, not something I wanted to seek out and gain pleasure by.
With my number one form of erotic stimulus now rendered unexciting, the world of sex looked cold and uninviting. Well, that was part of it, anyway.
When I was having good sex as a submissive (and I define sex the way the authors of The Ethical Slut do, as in any sensual act, so not necessarily intercourse), I would take pain up to levels of a localized eight or nine. I liked it hard, I liked tears brought to my eyes, I liked to be brought to my knees in utter submission, seeing the glory and mastery in my dominant\’s eyes. That was part of my pleasure.
Stretched out on the physical therapy table today, while I laid on my stomach, face down into a pillow, cotton clenched between my teeth and my fingers as I choked back my screams, the saliva and tears mingling and pooling around my chin, I was unable to make eye contact with my physical therapist, though I knew she had no look of triumph or pleasure in her eyes. On the contrary, she was sincerely asking me \”Too much? Cassandra? Is the pain too much? Are those tears?\” \”Nnnnnnnnnnnnnnnammpphhhh,\” I replied, shaking my head once in the negative, unable to move anymore more than that.
No pain, no gain.
My physical therapist is working those knots out of my ass with one of those little hand held four pronged pyramid shaped thingamadoodles that I always thought looked unbelievably neat and I wanted one until I had this one used on me. Now I loathe the god damn thing and like Pavlov\’s dog I cower at the very sight of it, trembling with fear if anyone brings one near me. These little massagers are used on places on the body where there are deeper areas of fat — like the ass — that a regular massage would not be able to reach. My PT assures me that I am not that fat and that anyone would need one of these massagers for their ass, but I am not convinced. Body image issues. At any rate.
She has me lie on my stomach, slathers me in Biofreeze, which is this fantastic numbing agent that I am positively addicted to and would barely be able to get through a day without, and presses down hard directly on the trigger points, massaging back and forth, trying to break up the knotted muscle tissue. This lasts for probably all of five minutes, twice a week, but those five minutes feel like the longest five minutes of torture I can possibly bear.
My mind goes blank and I literally see a maroon coloring take hold of everything behind my eyes. A few times I have nearly, if not completely, passed out. Pain used to be exquisite to me, sumptuous, something to delight in, a delicacy, to be treasured, appreciated. This is not any of those things. This is something to be avoided at all costs. This is something that no one could have warned me about, that I could never have eroticized, that I would never masturbate over. This is the sort of thing that I would and do have nightmares about. Over the summer, barring when they were working on my wrists and the first two weeks there, I looked forward to physical therapy. It made me feel good. I dread every single session now, and I still have a month left.
Each time she brings the massager down on a trigger point, it is equivalent to the time I broke my ankle when I was eight, that very moment the fracture snapped through my bone and I could feel it course through out my foot as I fell, screaming. A localized ten. My parents ignored me then, refusing to take me to the doctor for three days. I am silent now, and I am already at the doctor, and she is the one bearing down on me and giving me more pain. Funny, that.
What is even more amusing is the pain is supposed to be alleviating with physical therapy visitations, but instead, I go and get my ass massaged, she bears down on the trigger points, and then I walk away with my ass and legs in more pain than when I walked in. The pain remains that way for two days, subsides (perhaps due to the painkillers?), and then in another day I have to go back to physical therapy and it all starts again.
All this pain in my ass makes it hard for me to sit down in most positions, or to sit for very long. Walking around is difficult. Standing is actually the easiest thing to do, but even that makes my rump sore. Christ. My body is rebelling and all I really want to do is boogie.
Do you have any idea how hard it is to get your groove on when you have giant tennis balls lodged in your ass? And with my penchant for electro-clash, they are probably fucking neon colored tennis balls, too, just to try and make me happy. Well, note to tennis balls: nothing you do is going to make me happy unless you bounce on out of my anal cavity and into somebody else\’s court.
So when people say \”You don\’t look disabled,\” I just look at them with a wry smile and say \”Looks can be deceiving.\” If I really had balls, I would tell them to feel the balls in my ass for proof of my disability.
Bibliography:
Starlanyl, (2001), Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, New Harbinger Publications, Inc.
