Piriformis, the muscle you never heard of, can be a real pain in the butt…literally, but at least the problem is neuromuscular, and not in the bones. It turns out to be related to all the forced Haldol injections they gave me at Yale, and something as well to do with this deep piriformis muscle and the sciatic nerve…Dont understand it all, but it all adds up to a huge amount of excruciating Pain with a capital P!
I ended up at the local non-hartford ER on Monday/Tuesday morning, in the very wee hours, in so much exquisite agony i could not move off the chair i sleep on.
What do you expect? I sleep in the same chair i eat and read and draw in mostly…and now i am imprisoned in it in pain, why shouldnt i live in filth? It isnt actually the dirt or not that bothers me, but the constant chaos…i would prefer orderliness, but cannot keep things in any state resembling it, so chaos reigns! I do not worship the great god Chaos, but no one could guess that from the constant state of affairs chez moi…the drawing i did in my journal doesnt even begin to depict the truth. In fact, i dont know how to do so. It is incredibly difficult to draw the mess and chaos and disorganization of my room. One must define something to draw it, so by necessity you bring an order to the room in culling it of unnecessaries that it does not have in the realness of my unbeautified life. Pretty as a picture my room is not!
One thing you notice in this definitely unprofessional picture is the presence of a single crutch. I hated being at the ER but if I hadn’t called 911 (after pulling my emergency cord and wondering if anyone would ever come to my door…and finding out that someone had actually called 911 for me after the loud buzzer over my door had sounded for at least 1/2 hour…). When I hear someone’s emergency buzzer, I always knock and try to go to the person, find out if I can help them in any way. i dunno who called 911, but why they couldn’t at least let me know they were doing so I dunno. i felt so alone all night, and then at the ER. it was almost worse, because of course I was treated like an hysterical psychiatric patient largely, and ignored. Truth to tell, my hip pain was not going to kill me, and apparently the testicular pain of the young man in the other part of the cubicle, could have killed him (so says Dr C, but according to her it would kill via “shock” so she means because of the degree of pain…So I am skeptical. I think the reason he was getting so much attention was because “Everyone knows” that testicle pain is horrendously awful and shockingly painful…”everyone” because of course MEN have experineced it and let us all know how bad it is. Women have experienced childbirth tearing them literally apart for eons but no one goes on and on about how that pain needs to be attended to at all costs. No we just let them scream…SO, ditto me versus the young man with a testicle that did not apparentlhy need surgery but who was, I admit, the subject of a sadistic surgeon’s ministrations, and manipulations, even as the man denied that the young man needed his help. I mean, why stand there, holding a guy’s twisted ball in your hand, manipulating it in such a fashion that you kmow you are causing breathtaking agony, everyone who hears the sucked-in choked-off breaths of the patient knows it, why do that, what are you odoing? when you then in the next breath announce that this testicle is FINE, nothing that needs YOUR attention as a surgeon, in fact, you cannot understand why it is still causing the man so much apparent pain. But it is…The young man is nearly comatose with pain, and the surgeon doesnt’ even apologize. Only says, Well, you are fine, nothing here that needs me. I will check in with you later, but you are not a surgical candidate as far as I am concerned so you are none of my business.
But what I was saying was, sympathetic as I may have been with respects to the doctor’s sadism and disregard for all human feeeling. Nevertheless, it was apparent that the entire ER had sympathy for testicle pain, and youth, little to none for hip agony in a 60 year old bag of a woman with scars on her legs and arms and face…It was a matter of appearance and what and who was appealing, and I was nothing of the sort. Who did they want to root for or give a damn about? I was just a title 19 patient with nothing to offer, and since I had brought nothing but a key to get back into my aprt with me, I could not prove otherwise. Could I? Nothing to tell them I was worth anything but scorn and disgust, which they gave freely.
I knew in the end, that is., after 12 hours and very little had been done past a CT scan that showed piriformis inflammation, that I had to prove that I could function well enough to be discharged from the ER. I knew it would involved exquisite agony but it had to be done or they would keep me in the hospital because they would claim I could not function independently. SOMEHOW I had to prove I could get my own jeans back on, and dress myself. I knew that if I could do that they could not keep me, and I was desperate not to have to stay there any longer than I had to…which meant in practice that I wanted to leave ASAP.
It cost me more pain that I can ever express. I literally had to suck in my breath and flrce myself to “break my own hip” or feel as if I were doing so” in order to put my leg inside the pants and then manage to pull them up and zip the zipper. But I did it. SOmehow I did it. It felt as if I were literally stabbing myself in the abdomen each time I forced myself to do any abrupt movement like putting my right foot into the pants leg and pulling them up. But it would do not good to go slowly. A slow agony would never do and would only prolong something I could never tolerate. So I did the “white hot poker routine” of forcing myself to make abrupt changes in position and get things over with. And I managed to get dressed and eventually I was discharged and my dear friend Josephine agreed to come pick me up after she was through with her last housecleaning job, which was just then…
But where am I going with all this? Piriformis Syndrome, you can look that up. It is all very mysterious and not very common. But curable or at least temporary usually and treatable. So I am not dying and not even very ill, though the pain is mentionable! All I have been writing about, basically, is the pain, the dismissive attitude, and this, what finally transpired: I saw my doctor’s office’s APRN, Sara, who is very wonderful and while young doesn’t make me feel old and despised. She put me on a difficult drug to take but one that promises quick pain relief, if I can tolerate it: prednisone. And Soma for a muscle relaxant, which may or may not work. I will start the former tomorrow morning and try the latter as soon as I finish this blog post and can justify inducing sleepiness. She did not minimize anything, and I felt taken at my word and seriously. Neither as if things were being exaggerated for my benefit nor dismissed for the same reason.
I apologize that this blog post has been so boring. I am halfblind with sleepiness, because i have been up since 2:30AM, one, and two, the hospital lost my two pairs of glasses with prisms in them so I am using glasses that do not prevent double vision at the moment. Trying simply to see the screen and the keyboard is an effort that defeats me more often than not. You can imagine the effort to be eloquent or anything else is beyond the beyond.
But mostly I think I am just plain overtired, which makes it triply difficult to focus my eyes on any one object, let only make doubled images fuse into a single image. So I will stop for now. Take the Soma and go to bed. Thanks for your forebearance. If I promised an email to anyone, I will try to get to to. Remind me if you want to. I meet with my siblings Martha and Philip tomorrow so I may be busy for ao while but I hope to be in less pain and more able to get back to people who have written me about things.
I feel like screaming, I am a human being, you effers, treat me like one! But of course, that is what I would say only to one group of people, the hospital personnel who so tortured me, and not everyone does that. Though I get this sense that a lot of people treat me like I am my diagnosis and not a real HB…if you know what I mean. As soon as they know you carry some sort of MI Dx, and I do not blab about that, but they find out, esp if they know the meds I take, then they suddenly do not trust me any longer, trust that I live a life that even remotely resembles theirs. Suddenly they seem to believe that I am not like them in anything that they could possibly begin to believe in. Or worse that they cannot “get into my mind” and therefore they assume that I live in some world that they cannot possibly comprehend either…
Weirdly enough, I live assuming the precise opposite, that our worlds are pretty much the same, that what I think, they pretty much think. I assume that whatever differences there may be, they are very small when it comes right down to it, and that they are miniscule in the larger plan. So it hauls me up short when I realize that they believe they cannot understand me. And are afraid of me and do not want to try to get to know me, because of that fear. And it makes me feel VERY MUCH ALONE.
You who are married or have relationships or have had them in the past, you do not know how lucky you are. I never have. I have never loved anyone, nor felt that I was safe with someone and not going to be abused or taken advantage or or simply that I was with a person I loved and was loved by and was their first priority. Not someone who was my peer. Yes, for 7 years I was, I think, my father’s priority, maybe his first priority, I dunno. I felt cared about and loved. But he was my father and he owed that to me. I ought to have felt that way all my life. All children should feel loved and cared for by their parents…no matter what.
I feel so alone, so alone. I do not know who to turn to or who to talk to. I do not know what to do or how to stop this juggernaut from sliding down into the abyss, taking me with it . It started with the headache all week, which went away yesterday but came back with a vengeance again today! I feel like no one in my family cares about me or even likes me except perhaps my brother, and he may do so on sufferance, I dunno. I do not trust anyone…
How can I? I have been so broken by people who said they cared about me and wanted to help me and then tortured me (hospitals) or abandoned me (my father) that I have no reason to trust or love…I do love my family, mind you. I even like them all. But it doesn’t even matter to them whether I love or like them, my like and love are meaningless to them, worse they are burdensome to them.
I sense that this is often the case, and it is why I have never bestowed my love on anyone: people do not want my love, not my real undying love. They would fear it and hate it. It would be a huge burden on them. So I haven’t burdened anyone in the world with my love ever. Because I would never do anything so evil to anyone, not even my worst enemy…though I do try to practice love thy enemy, as I have said, and I try to make my enemies my best friends. Nevertheless, I would not in fact give my enemy the worst burden of all, the loathsomeness of my heart. Who could stand it, who could tolerate it? I would rather die than think that I had so oppressed any person with something so intolerable.
But oh, how I cry to think that I am so loathsome, and why is it? Who and what am I that I am so disgusting? Why did I turn out this way? I always tried to do good, and to do it secretly so no one would be embarrassed or have to thank me…and now what am I but a disgusting turd who only oppresses the world with her presence. Whose love and heart would only horrify the person to whom she gave it…Not that I would dare do so, but that is because I understand the horror of such a gift-curse.
How did this happen? What happened? It will never change, I know that. It is a fact of my existence, of Existence itself. My father cared about me, but he also know how burdensome I was…He was glad to die and leave me, I think. Or perhaps he could handle my loathsomeness because he didn’t have to deal with me much…Who knows. All I know is that I am alone, alone, alone…and I will never be anything but alone. How can I go on, knowing that? Oh, I will. I will go on. But how do you? Faking it, always, pretending to people that all is fine and dandy, because no one wants to know how awful things are, NO ONE. If they did, it would only be another intolerable burden…
So you fake it and smile and go on…That is all anyone can do, right? Stiff lower lip and square your shoulders and pretend it is okay. Because you have to have people like you, or smile at you…or you will die. And unless you want to die and you do not, you need those fake smiles back at you for food to relieve the loneliness that nothing and no one will ever fill.
____________________________________
Sorry about this post, but i had to write it. I had to get it off my chest or I would have cried all evening. I promise I am working on the Liebster Aware, slowly but surely. I still need to get all the 11 blogs in order, and the questions written, but I plan to do that on the train to NC on Wed. Perhaps I will have it all done by the time i am back on the 17th. My apologies for the self-pity in this post. I try not to sit there, but I cannot always keep my head above water, or my arse off that pot. I’ll try to do better. But if I cannot be honest here, then I won’t continue to write. It isn’t worth it to lie here and have to lie about how I feel everywhere else as well. Okay?
Thank you for listening, if you did. Thank you from the bottom of my impoverished, dried up, lonely old heart.
Pam W
I wanted to add certain comments that were particularly to the point. Here is one or two from Lady Quixote:Dear Pam,
I liked this post, although I hate that you are in such pain, I like the honesty, I applaud the bravery, very very much. And oh yes I do understand, I relate with all my being, to virtually every word you wrote in this post, and in these your comments, too. Both comments.
As I’ve told you, I am writing a memoir about my similar history. I’ve changed the working title on my book a few times: From Here To Insanity, Healing From Broken, Growing Up Crazy, and some others. The working title I have now is my favorite. I’m now calling my book GOING CRAZY, a memoir of horror, hope, and healing.
The pain, the loneliness, the “shame” and isolation of having a been labeled Mentally Ill…. the label is a curse that hurts as much, if not more, than the disorder itself.
Here are the words I have on the cover of my memoir-in-progress, words that echo this post to the marrow of my bones. I have this on the front cover:
Mental illness seems to run in my family. (So does Protestantism and the tendency to vote Republican.) What causes mental illness: nature, nurture, or a combination of things? After a series of traumatic events, I had a “breakdown” at age 14 and was put in an insane asylum for 2 years. For the past 4 decades I have tried to forget my allegedly schizophrenic episode. But when I learned—in the midst of a family crises—that my first great-grandchild was on the way, I embarked on a Madness Marathon in search of answers.
And this is on my back cover:
Was I Cured of Schizophrenia? Do I Have “Complex” Post-Traumatic Stress Disorder?
MY MIND WAS BROKEN—DOES THE “LABEL” MATTER?
The extreme childhood trauma that caused my mind to shatter was painful. Being diagnosed with schizophrenia at age fourteen and placed in a state insane asylum for almost two years was even more painful.
But my most damaging experience by far has been the shame and isolation I’ve lived with for over forty years, caused by the demoralizing stigma of having been labeled “mentally ill.”
For most of my life I’ve tried to hide my history. Now I’m telling my story to help transform the hurtful prejudice borne of ignorance, into the healing mindset of understanding and compassion. Having recently become a great-grandmother, I feel compelled to write my memoir as a legacy of truth and enlightenment for my adult children and grandchildren, who have suffered so unfairly as a result of my emotional wounds. I am also sharing my story for anyone with a background similar to mine, to let you know you’re not alone.
………………………..
I’m sending you love and hugs and compassion in my heart and mind right now. I hear you. Loud and clear. I have stopped communicating with a sister who refused to honor my request to please stop passing messages on the me from our mother, particularly the “tell Lynda I love her” messages. NO, my mother does not love me. Her actions have proven it over and over and over again. I told my youngest sister: “I’m not asking you to agree with me or believe me, I’m not asking you to take sides. We can agree to disagree about whether or not our mother loves me, that’s OK with me. All I ask is that you please stop telling me that she does.” My sister said nothing, no response of any kind to my request. Then a few weeks later she posted right on my Facebook wall, on Christmas Eve of 2012: “Merry Christmas Big Sis, and Mom says to tell you how much she loves you.” I deleted that message off my wall, and my sister then deleted her account… so I deleted my account, for over a year, only coming back to FB a couple of months ago to keep up with my grandchildren.
I think we know when we are not loved, when we are not wanted, considered an embarrassment and a burden. I have grown nieces who do not know me, but they would post rude things on Facebook about me because I was locked up in an institution and diagnosed with schizophrenia 46 years ago. I was released from that place 44 years ago. I have had numerous doctors and therapists over the years tell me that I was misdiagnosed, I had PTSD or something else. But in my family of origin’s eyes, all but a couple of my relatives still treat me like the embarrassing crazy lady…. it HURTS. Yes it does. It EFFING HURTS. Worse than the pain and horror of “going crazy” in the first place. You SEE it in their eyes, you HEAR it in their words, their tone of voice, you DISCERN it in their body language, that “jumpiness” that 99% of the people get when you tell them, or they otherwise find out, about your MI Dx. It’s like a mask comes down over their face…. and you feel that ARCTIC CHILL, the deep-freeze of being frozen out.
Also, Pam, in a marriage the loneliness and the judgments, the raised eyebrows, the rolled eyes, the heavy sighs, the thoughtless comments, such as my now EX husband made to the intake nurse at Johns Hopkins University Hospital Psychiatric unit, where I had gone voluntarily hoping for HELP with my then-intractable depression. In describing the harrowing traffic in the streets of Baltimore as he had driven me to the hospital that day, my now EX quipped: “The traffic was so bad, I thought *I* was going to go crazy, HAHAHA.”
NOW I am lucky, NOW I am married to a man with severe chronic PTSD from Vietnam combat, a man who has spent time as a patient on a psych ward, so he UNDERSTANDS and does not hold himself above me or apart from me.
I’ve said it before, I’ll say it again and again and again until I die: The CURE for all types of mental illness labels must begin with CARE: Compassion, Acceptance, Respect, and Encouragement. Everything that is the opposite of the shunning, the subtle cold shoulder, the jumpiness that we can SEE and FEEL and HEAR because, yes, dammit, we may have a screw loose here or there, but we are not stupid, deaf, or blind.
And this:
Oh no, I just went back and reread my comment, and it’s full of typos. So sorry, I was writing in my emotional part of my brain, not in the editing part. Also I put that the message that made me go off FB for over a year was posted Christmas Eve of 2012. Obviously that’s wrong, it was 2011.
Brenda, I wanted to tell you that I appreciate the things you wrote, too, particularly the part about our need to be kind and loving to ourselves. So true. It’s also very true, what you said about hospitals being an unnatural setting, and that we cannot read minds, and there may be times when we are mistaken in thinking that certain people do not really like or love us. I do believe that is also true. However, that jumpy feeling you so honestly said you feel when you discover that someone has an MI Dx,,,, thank you for being so honest, and yes, that is an all-too-typical response, and it is THAT RESPONSE, that involuntary attitude of the general public toward people with certain mental illness diagnosis, that jumpy reaction is very easy to discern. And it may be involuntary and unintentional and even understandable, thanks in large part to how the media portrays people with serious MI labels, BUT.IT.HURTS, when YOU are the one being looked at and talked to like you are a freak, the boogie man, a strange and unpredictable creature from another dimension.
I am lucky to finally have my “certifiable” husband, whom I did not meet and marry until we were both in our 50s, and our sweet fur-baby Cattle Dog, who doesn’t know a thing about Mental Illnesses and couldn’t care less, so long as we feed and water and walk her and give her lots of back rubs. I worry about you, Pam, feeling so alone. Loneliness is a soul killer. I know, for I have spent the vast majority of my life feelings just as alone as you describe in this post, yes, even when I was married. In my experience, there is nothing more lonely than being married to someone who talks down to you and treats you like the worst of the personnel in the psych hospitals treated you. I don’t know why a man who looks down on the mentally ill would even want to marry me in the first place, when I had not ever hidden that part of my history from a potential husband. I can only surmise, based on how I was treated, that a man like that is looking for a woman he can control and verbally and even sometimes physically abuse, cheat on her and do whatever the heck he wants when he wants, and feel all justified about it and superior to her because, after all, his wife is “crazy.” I would rather live all alone under a bridge and eat out of garbage cans, to ever be in a marriage like that again!
Note to Lynda from pam: i looked and looked but just could not find any typos to correct for you…sorry. The date part i let you correct in your note, but the spelling typos just do not exist so far as i know or even that spellcheck can see. I know that there could be homonyms that were misspelled, but i did not detect any of those either. So there! 8) thanks for your brilliant addendum!
Sorry…I do get some breaks with Imitrex, but not complete and not for long. Then the pain returns in full and I cannot take another for 24 hours. Or at least 12 hours if I get desperate. I try to wait 24 hours though because I do not want to get a rebound headache.
Anyhow, I am still slowly trying to gather 11 blogs for the rest of the Liebster Award, so I haven’t forgotten that obligation. It is still in the offing, along with everything else in my life that gets put in abeyance when I get a monster migraine. Okay. It’s back to lying down and being still. Thanks for your support everyone. I’ll be back soon.
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~