Category Archives: Marriage is hard

Not Particularly Original Thought

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Plenty of people have written about the oddities of social niceties; particularly the expectations bundled into the question, “How are you doing”/”How are you?” as greeting. We all know that 90% of the time, this is not a question that expects (or desires) an honest answer. The prescribed response is, “Fine! How are you?” To which the answer is also supposed to be, “Fine!” Then we go along our merry way, where everyone is fine and no one is burdened with too much information about one another.

Having spent much of my life emotionally chained to a person who is borderline and a compulsive attention-seeker, I learned to really dread that question. That person’s answers were often so packed with TMI one felt they might have stepped in something squishy and hard to remove. As a result, I developed a severe allergy to any and all attention-seeking. I became the sort of uptight white lady who would be aghast (and a tetch judgmental–ha, okay, far more than a mere tetch) if someone were to suddenly launch into an inappropriately intimate response to the question.

An example: I recently ran into an acquaintance at a local shop. I asked, “How are you?” and swear to dog, within minutes I was regaled with information about a pregnancy scare, a broken condom, and someone’s spasmodic vagina. Honestly, most of me immediately ran away, leaving only a shell to nod and say, “Oh…” and “Wow” in a faint voice. It’s a double-edged sword, in that having suffered much judgement in my life, I endeavor to be a person that others feel they can talk to while at the same time often being the listener and not the speaker in those exchanges. They can tell me all that, and I can leave them feeling like it was okay, and they know that I am doing “fine.”

So, while I became the X-man of Showing Not My Hand, I also ended up being pretty damn isolated and lonely. I think that’s a big part of why I find blogging so enchanting–I get to talk about myself, and for much of my life, I’ve not allowed myself to do that. It also results in a sort of boiling over, though—when I start to resent how much I am expected to not only care about others but to also always be FINE, I may lose my composure in a big way, becoming the vulnerable mess of raw nerves and anger that I want no one to see. So I walk this line, fearing that I might accidentally share and be punished, while also brimming with unspoken reality (one of the traps that my borderline often set was to furiously attack anyone for sharing anything that might distract the audience from her, the center of the universe. That’s actually why you can’t google this blog–even as cloaked as my information is, the idea that I speak of my own experience would trigger that person to pour gasoline all over this and set it ablaze. It’s happened before.).

Having this wild and woolly collagen-based disorder that affects everything in my body has added a new wrinkle to this set-up. I’m not sure that I will ever, really, feel “fine” again. Yet, I do not want to be that person that spews a litany of problems every time a socially prescribed inquiry is made. I’ve come a long way, in that I am no longer completely locked down and committed to always being FINE–I have found some people who do want realistic answers and respond lovingly when I say, “I’m not feeling well” or “I’m having a hard time coping today” and such. Yet, even in intimate relationships, I fear that a daily, honest answer will wear away at those closest to me.

I tend to go through a sort of triage when my spouse asks me, “How are you feeling today?” Like this morning when he asked that. I could list everything: “Well, I slept all night last night so that was great but my carpal tunnel is flaring up and my hands hurt, and my hip wakes me up briefly at night and my shoulder is fucked up and I think it’s starting to cause nerve damage, and I am really dreading first dress tonight and fantasizing about quitting my job and becoming housebound.” On the other end of the measuring stick would be, “Fine.” So to be in the middle, I try to pick maybe two things. “I slept well, finally, but I wish we didn’t have first dress tonight.” What’s most pressing in my load of troubles right this minute? I worry he’ll get compassion fatigue eventually and resent the fact that I can’t just be “fine” anymore.

The key to some of that is having more than one person to confide in. I cannot, and should not, make him the only bearer of my ills. I have a Shrink for that (although tomorrow is our last visit as she’s retiring and I haven’t set up a new one yet). I have a handful of close friends that I feel pretty comfortable with and that I think won’t start to see me as just a set of illnesses and not a person. I have my mother.  I have the message boards at the Ehler’s Danlos Foundation’s group on Inspire.com. And, I have this blog. Everyone’s life, ultimately, is lived alone. This both terrifies and comforts me and I try to find my way through the social swamp and determine when the answer should just be “fine” and when it can be in the middle and when the rare occasion that I can set the whole mess in front of someone presents itself.

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Maybe I’m Allergic to July

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If my husband were writing this, he’d likely say that my sudden descent into fury and then hysterical, ugly sobbing for over an hour last night came right out of the blue. Except that careful examination of events leading up to that suggest that there were many warning signs that might have been noted in order to batten down the hatches in time. I am past the point in my life where my behavior is something that happens in a vacuum and is related to the inscrutable whims of having ovaries.

Most of my life my emotional tactics have been polarized by being in the shadow of a person whose voice needed to the the loudest in the room, whose needs had to be greater than anyone else. The tacit agreement that this person deserved all the space/love/attention was that which forced me into a corner with my own emotions. I’m tightly lidded, and sometimes  even I am not reading my inner barometric pressure very effectively. It’s my job to be fine. Always. It’s my job to be rational. Always. I am never sure what the right balance is, so I tend to fail to release some steam in time to avoid a complete breakdown. Sometimes I’m not in touch with my feelings enough to know that I need to bleed a little air from the lines before something blows.

Second only to having a rare, incurable condition that includes chronic pain and a host of other oddities is the isolation and loneliness that come with it. It’s not as if someone comes across to find me bleeding from the head or with a visibly broken bone that demands action. People really only know if I am in pain if I tell them. It’s not my style to report my pain to people constantly, and I don’t want to become the sort of drag that can only talk about themselves more and more loudly to gain attention. I compensate well enough to fool even myself sometimes.

From Sunday night until Tuesday night I woke at about 1:30 or 2:00 am, with significant pain but also a racing heart and scattered, unsettled mind. I lay awake until 4:00 am each time, trying not to freak out. Tuesday night I planned for it. I drank less in case that was the issue. I took a bath to relax (instead it put my heart rate at 119, but I tried) I went to bed early. I set my mind up with things to think about should I wake up, and reminders about relaxation. I woke up at 1:30 am feeling both angry and unable to focus or settle my brain. My shoulder was terribly painful so I iced it, and whiled away the anxious hours until I fell briefly back to sleep at 4:00 am.

Once I got up, I Dr Google’d the beta blocker I’m on–Propanolol. Surprise, it can cause wakefulness and disturbed sleep particularly in the wee hours. Believing my PCP to be away on vacation, I finally decided to text him anyway around 10:00 am. I said to my husband at lunch time that I didn’t really think I could be asked to deal with all of this (pain, sleeplessness, lack of professional medical support). I caught the edge of tears in my voice and stuffed that back away. Part of me might have hoped that my spouse would immediately take me in his arms and reassure me, but that part of me is an immature girl who wants her mind read. Or, what it really is–I need someone else to bridge the gap between the growing emotional tension and the place where I can let some of it out constructively. When they don’t hear that unspoken request, I feel abandoned and angry.

I waited all day to hear from my PCP. I finally did, at a little after 5:00 pm. He’s not away on vacation after all (the only excuse I would find acceptable for not getting back to me). He told me to taper the Propanolol. I had to query then as to how much? How long? A series of texts trying to elicit information from him. And then at the end of that conversation he texted, “I have another EDS patient who is doing well on Cymbalta. Have we tried that?”

If you wish to go back through my archives you can see that last July/August, we tried Cymbalta not once, but twice, and my reaction to it skirted the edge of “needs to be hospitalized”. On the surface, maybe, this is just a boo-boo on his part. To me, it felt like a ton of bricks. First, it would help if my PCP remembered my history, especially the parts that required constant texting for two or more days to make sure I got through the reaction. Second, I felt shamed; he has another EDS patient who is apparently easier to work with and gives him the satisfaction of helping. Third, I was alarmed that he thinks he’s good enough at this to manage another EDSer, because I generally feel like he would give anything to pass me on to someone more competent.

I texted back, “Twice. Serotonin reaction both times.” I never heard back. I actually went back to my archives, too, to make sure that my recollection was correct–once again allowing a medical professional to cause me to question myself and what I know. My husband even said, “That’s what he tried on you last year that was so bad?” At that point I was already imploding and missed that he was with me on this and might have my back. I was aware of feeling angry and tired and pain. I did not take a full inventory to see that my internal pressure was approaching the red line.

I’m giving up massage, the one thing that I could hang my hat on as working and helpful. My shrink is retiring in September. My pain has ratcheted up significantly. I’m again having a drug reaction that crosses yet another item off the list and leaves a significant problem unsolved. I haven’t slept well in awhile. I don’t have adequate medical care or support. I’m going back to work soon, when I will not have the ability to sit around all morning because I stayed up crying half the night. I have lost some of the support I used to get from my mother, because a mentally ill family member is too close for her to not to lose her focus and boundaries. There are NO solutions for any of my most pressing problems.

So the fact that I then went on to very much overreact to a perceived slight on the part of my spouse and go on a rampage of shouting that ended with him leaving the room while I sobbed and ugly cried is somehow not so surprising as it seemed last night. I can see that I made myself unlovable even as I demanded it from him, and was somehow thorny while wanting him to be willing to hold that thorniness close to him and be tender with it. I can see that there is no way I can be neat and surgical about my emotional state and subsequent falling apart. I completely lost my balance last night, and I feel pretty wobbly yet today. I’m not sorry for the sobbing because I needed to release it. I’m sorry I wasn’t able to let any of it out before it reached the atomic level. I don’t know how to have a well-timed, scheduled breakdown, nor should I be so constrained, but for my own sake I need to stay a little more in touch with my internal state.

Which is difficult when so many things are just not working for me right now. I’m probably not done crying.

Like The Star Wars Trash Compactor

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I am having a hard time with having lost Boris (our small Mexican dog with the big Eastern European name) and doubting my choice to let him go. Not in any rational sense; on paper, logically, I know I did the right thing. But in my heart, I feel sorry and sad. I hope he understands; but maybe not–I’d love a world where animals had the same treatment as people, but would I love that because no one would get euthanized for having run out of quality time, or because people wouldn’t have to suffer for so long, either?

I just know that I really, really miss that little guy, and I am responsible for his absence.

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The trip to Chicago was really emotionally hard, and the key piece of that was understanding that I can’t depend on my spouse to advocate effectively for me when he is in his place of origin. On one level, I get it–he reverts to his kid role, he’s overwhelmed, they are extremely difficult. On the other hand, I’m angry and disappointed. I really am on my own, and since that is true, I will never go back with him to visit them unless something is really wrong on a deathbed sort of level. I can’t put myself through that. If they come here, as they have threatened, I will go out of town. I’ve given a lot to them over the years, and they’ve taken a lot more than they’ve given back, and their son can’t set good boundaries with them. So, I will have to set boundaries to take care of myself.

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Long after I am gone, I am sure medical science and genetics will evolve to determine how mental illness–or at least the propensity for it–is passed down. Borderline personality disorder runs in my family, and while I am sure the process is somewhat akin to alchemy more than straight genetics, it means that right now there are two Borderlines running about– each from a different generation. That’s just my mom’s side, too–there’s also depression, anxiety, alcoholism, sociopaths, suicide, self injury and drug problems coming from both sides. The question maybe is how do any of us make it out alive? When you know that someone is ill, and you’ve proven to yourself that you cannot help them, you have to detach and protect yourself. Sure, their behavior isn’t personal, it’s pathology, and yes, they are in tremendous pain, but that doesn’t mean you should allow them to hurt you. The moat is in place, the drawbridge is up. All signs say, “Go away.”

You’ve reached the boundary, you’ll need to turn back.

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One of my tenants called me today, in tears. One of the roommates’ mother had committed suicide last night. Walked out of the room from an argument with her kids and killed herself. The tenant who called me kept saying she was sorry for burdening me and I told her she wasn’t, I care about her, it’s a horrible thing. I reminded her to take care of herself so that she can keep on being a good friend to her roommate. I told her that her grief is valid, and doesn’t need to be measured against the roommate’s. Gosh, there’s enough grief to go around, really–you won’t run out, or take someone else’s, go ahead and grieve. I suggested that she not judge anyone for how they act right now; grief does strange things to a person, and suicide is like knowing an asteroid is coming to vaporize you–maybe then it might seem rational to ask about how much the house is worth or what should be done with the cars–those are solvable problems, whereas the asteroid is just this terrible thing hovering above your head. Maybe it’s not possible to look right at it; at least not at first. I told her we’d cover the rent if it was late, not to worry.

I revisited, for a moment, Ray and Ruby and John. But then I let them go back to their places. You never get over it, I told my tenant, but you learn to live with it. It takes a long, long time.

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The theme is who do I have to take care of, and how much? I have to take care of myself. I have to take care of my child. For ten minutes on the phone I can take care of my tenant. I do not have to take care of people whose mental illness could cause them to harm me. I do not have to take care of people who have no space in their lives for me. I do not have to take care of people who aren’t doing their work.

The shrink said that when we’re about to refine something, or pass to another level of understanding, just before we get there it feels like the walls are closing in, and the problem is everywhere. All around me demands are being made for my attention and energy. People want me to put them ahead of myself. So each time I say no, I’m moving forward. No, you cannot come to my house and ring my doorbell a million times and pound on the door. No, I won’t go on a trip where I will be lonely and ignored and pushed beyond my limits. No, I will not act as a buffer for you to avoid your family.

She also suggested that I probably need a really good cry. This is also true, but a far more elusive beast.

Jumbled Thoughts and a Jeep

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Endless analysis isn’t healthy, yet my brain loops happily long after it’s productive.

My spouse wants to buy a WWII-era Willys Jeep. I am angry about the Jeep. I could spend hours trying to figure out why. But I would still be angry.

So, I’m angry. I feel like I’ve been set up to be the person who is no fun. I feel jealous. I feel left behind. I feel set aside, unnoticed, left out. I feel afraid.

Afraid of a Jeep? Yes, apparently I am. I have listened to things like “stiff suspension” and “bouncing around the goat trails” and “fun” and I know those first two mean that the last isn’t happening for me. It is something he will do without me; and not because I don’t want to (which is the position I am outwardly holding) but because I don’t think I can, which is the part where I feel like crying instead of feeling angry and hateful.

I feel left behind. The next thought that seems to follow that is that I feel that way about our upcoming visit to see his parents in Chicago (the Chicago suburbs, I add, hastily, having learned there is a VAST difference—learned because “my parents live in Chicago and have a pool” conjured an entirely different scene than “they live in a suburb in a smelly house with a crappy above ground pool full of goose shit.”). We stay with his brother, who has stairs. I am deeply worried about the stairs, and also feeling exposed and vulnerable and on my own–which is how those visits ALWAYS feel to me, and that was before I was so affected by EDS.

That’s it, really. I feel alone, and like I am being left behind, and like I am not worth the trouble. I cannot sit in one position on the couch for very long without something starting to hurt; I won’t do well being bounced around in a Jeep. It’s like when we talk about how much we think the child would like snowboarding and I wonder what would I be doing? Sitting alone in a hotel room?

Before my Grama died my mother and I took her to California for a niece’s wedding. We went out shopping and Grama said she would be perfectly happy sitting in her hotel room while we did that and I still feel like crying when I think about that and how much I don’t want to be left behind. I don’t want to miss out. I don’t want to be excluded, or cast as no fun, or the problem.

The Jeep makes me feel like I am. The stairs make me feel like I am. Right now, my spouse makes me feel alone. Not out of spite, but out of not being in my shoes.

They say that ultimately, we are all alone.Pity it makes us so uncomfortable.

So What If I’m Not Sure Why

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The spouse and I had a dust up night before last. I’m a Leo, so my position on a fight is sorta, kinda, well……enthusiastic? I’m not afraid of marital conflict, properly managed or even a little wild if it means a problem will be solved and I can look forward to a New & Different Fight the next time. I’m up for some air clearing and maybe some lovely post-fight making out (this has Never. Ever. Happened. in 18 years of marriage, there is no post fight love fest).

On the other side is the fact that I married a Capricorn. A denying Capricorn who prefers charged, miserable silences to actually bringing the issue out in the open and poking it with sticks until it blows up. I over analyze and review and claim knowledge and he plugs his ears and covers his eyes and runs away as I run straight toward the inferno (which he claims doesn’t even exist to begin with). “My hair is on fire!” “No it’s not, it’s raining, you are so overly dramatic.”

Like probably every-damn-one else who is married, we fight about the same thing over and over again. We dress it up in different outfits, initiate it around different acts, but it always boils down to he is too quiet and disconnected and I am too intense and attached. The problem with being the Leo is that the emotional person always loses, because they are always starved for attachment, whereas the Capricorn believes they can stand solitude for as long as it takes to break the Leo; which on average is about five minutes.

I’ve been really working out over the years and I can now do Not Speaking for up to 24 hours, which is way better than the 30 seconds I used to be able to do it before caving and taking all blame for argument just please please please love me again please okay at least talk to me or I will just order ice cream for you in whatever flavor I feel like. I will never get to the Olympian level of, say, being comfortable with it; but I can manage it now without becoming a complete basket case. Sometimes I like the first few hours, when I am still suffused with righteous indignation and can keep myself warm with that. I comfort myself with thoughts of how, a few young wives and many years later, he’ll realize he truly loved only me all along, but I’ll be too busy with my bisexual cabana boy to care about his broken heart (there’s like, at least, eleventy billion Country Western songs about this very topic, amirite?). My cabana boy is Hank Azaria, just so we’re clear.

So, the typical fight script is me demanding that he talk to me about The Issue and him refusing to talk to me until I become so irrationally angry that I say something about his mother and he leaves and then sleeps on the couch most of the night. I let the dog sleep with me, wherein she takes up 2/3 of the Tempurpedic, snores and farts all night. Who’s the winner, man, who. is. the. winner? This time, though, I went all atypical because instead of shouting and following him around screaming, I started crying. Like a faucet.

In case you’re thinking that this is where everything changed for the better and he took me in his arms and we had amazing make-up sexy times and then renewed our vows, that is not what happened. What happened was that the unemotional Capricorn felt that the reason for crying was invalid. “It isn’t about the reason!!!” I wailed, slinging snot, “It’s just that I’m upset!!” Like a tennis (shit, judge? referee?) he was dedicated to an internal rule book that stated that one cannot cry unless one has a reason that is cited in the Laws Governing Marriage Between Goats and Lions as being legitimate. “You can’t judge the quality of my crying!” I cried, wiping my lip and again wiping my hand on my pants because he was not going to hand me a tissue (the Laws indicate that handing the weeping woman a tissue would invite the perception of validation of the crying, which is against the Code of Stubborn Husbands).

Thus we entered the second ring, the Fight-Within-A-Fight. “You’re crying about THE DOG ON THE COUCH?” he demands, and I snuffle through swollen lips, “IT DOESN’T MATTER WHAT TOUCHED IT OFF, IT MATTERS THAT I’M CRYING!!!!!!!” Pause. “The Dog on the COUCH?” he says again, “THE DOG ON THE COUCH IS WHY THIS IS HAPPENING?” He stands up now, spreading his arms in incredulous fashion. I am concerned that if I look his way, I will see a TV audience agreeing that I am hysterical and also grossly snotted. I say, “YOU CAN’T JUDGE PEOPLE FOR CRYING!!!” He storms off, but he is confused. Usually storming happens because my head has started spinning round and I’m vomiting up every offense ever committed in the entire marriage. But, that’s not happening, I’m just sitting there sobbing.

The Fight-Within-A-Fight generally has to be abandoned, unless one is under the age of 25 and staying up the entire night still sounds like a reasonable approach. We are older than that, so we both know that if we wait long enough, one or both of us will fall asleep, ending the evening’s events until the next day, when we will not have slept well and will be willing to accept aggressive not-speaking as a fallback position. Which is kind of what ended up happening, except that one of us got up with grotesquely swollen eyes and had to use a lot of makeup to become even remotely presentable for work.

 

Maintenance Issues

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I approach my invisible audience guiltily, knowing I have posted nothing but health-related stuff in simply ages. The guilt goes forward and backward in time, since I am not posting anything I’ve made today, either. Sorry, chickens.

Speaking of chickens, my house backs up to a small farmer’s field (that is never sown, only endlessly plowed on days when the wind will blow all the dirt into my yard) and another property at the upper southwest corner that keeps chickens. Watching the chickens 50 yards away from me (or more, I’m not a good distance measure-er) in the evening when they suddenly emerge to strut about the field has become a highly anticipated occupation for me, while at the same time I mourn that they are too far away for me to hear them doing their chicken business. Our HOA doesn’t allow chickens, and in the spirit of how marriage is about having to fucking share and be flexible I am alone in the desire for chickens in my household. The child doesn’t count because he wouldn’t help with them anyway.

Our first play of the season opens tonight and it is just a terrible play. It’s part of a genre of play that serves only as a vehicle for the playwright to navel-gaze, and tells a story that isn’t interesting or worth telling. The cherry on top is that it features what is possibly the worst sex scene in the world in that it is directed in an unnatural, awkward and unrealistic way and set around a problem that is introduced mid-play for no real discernible reason except that should I ever meet the playwright I will be unable to make eye contact and will wonder when she shakes hands if her vagina seizes up that tightly or more tightly or what. The same amount of hard work and endless hours and thought go into a bad play as a good play, so it is kind of like running a marathon only to cross the finish line to find out that they canceled it and everyone has already gone home. Also, hiking pants are not designed for figure flattery, they are designed for function. I cannot make your actor sexy in her hiking pants, and I reached a point where, had I received one more email about it, I was going to send pictures of female Olympic snow-boarders with no words in reply.

See also: the pants are not the problem with your play, the inability of the female lead to deliver lines with any expression is the problem with your play.

Health issue wise, this has been an especially miserable few weeks. Essentially doctor-less, I have found that damp weather has a grave effect on my joints. I have also found that pain distorts my ability to respond to things and there have been two large dust-ups with my spouse that resulted in bad behavior on my part (as I told the Shrink, yes, I did ask myself if I wanted to get on this ride, and while the right answer would be no, I got on that ride and RODE THE SHIT OUT OF IT). The extra pain means I am X% more crabby, X%more angry, X% less in control of my mouth and thoughts. The timing is poor given the rotten play and a interim department chair who has, in just a month, reduced the department to clumps of people hissing angrily in tight conversations while he floats unaware in the clouds of his ivory tower. Also: there is no good time for increased pain, amirite?

The massage therapist is helping a great deal, but nothing will function as a magic bullet or completely ease anything, and degeneration is a process that doesn’t stop. The day before yesterday, wearing one of the two pair of expensive, “sensible” shoes that I currently own, I nearly fell down while teaching class. I clipped the wheel of a rolling chair and naturally my ankle chose to just fall on its side. I saved myself with the counter but elicited a couple of gasps from my students and was disappointed when my wish for instant death was not granted and I had to clumsily recover and try to pass it off as minimal. Internally, I was deeply upset—I had made the promise that I would not go forth with any sort of ankle brace unless I fell down again and while I didn’t fall all the way down, I would have had the counter not been within my grasp. So I am lying to myself and calling it “not a fall.”

I do have projects going, so there is hope of more creativity-related posts sometime soon. I am also the costume designer for our second production this semester, which will be SO much better than the first production that perhaps the sex scene wherein the thrusting is mimed in such a way that the male actor’s dick would have to be at least 24″ long will be wiped from our collective memories. One can only hope.

Listening

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OMG, kids, the past 48 hours.

I expected to have anxiety about starting the New Pharmacological Experiment. I was changing my normal routine, which can trip some anxiety alarms all by itself, in addition to starting not one but two new drugs I was very ambivalent about in the first place and going back to Physical Therapy. I was also stopping the Xanax, which I’ve been taking for about four months, and cutting my alcohol consumption by half.

On the surface, logically, this all sounded good. I might find a solution for my sleep issues, I might have less pain, I might have less puritanical guilt because I was switching to “legit” pharmaceuticals instead of evil, evil wine. I figured there would be an adjustment period, but I also was heavily pressuring myself to give this a solid try, and to be a good patient.

There’s a lot of pressure to be a “good patient” when you have a chronic, complicated set of issues that do not present straightforwardly and require a great deal of trial and error. I feel pressure not to be “crazy” so I try to be careful about how I present my feelings or internal process. I am fortunate in that my PCP is a friend and so there’s a lesser chance of him writing me off as a nut because I am not *just* his patient. There’s pressure to accept solutions as offered and be sincere in trying them. I can say I have, sincerely, tried PT/OT for my hands and for my ankles/knee and it did not work. That’s a check in the “good patient” column, meaning my sacrifice (money and time are particularly desirable to the medical gods) was acceptable. Other drugs, though, I have not always given a fair trial because, simply put, I’m afraid of them.

So there I was, Wednesday night, starting Cymbalta and Ambien. I was starting on a half dose of the Cymbalta and was to take that for a week then go up to the full dose. I had been strictly warned to take no more than 10 m of Ambien, not to mix it with Xanax or booze. The main reason I agreed to the Ambien was that it is supposed to be a sort of “knock-out punch.” They say to make sure you are ready to sleep before you take it, like if you took it then went to the bathroom they might find you wedged between the toilet and the wall, dropped in your tracks.

Ambien, in case you don’t know, is a hypnotic sleep drug. There are instances where people get up and do things they have no memory of doing when taking it. What I experienced Wednesday night was the sense that I was mostly asleep, but frequently very aware of being asleep, of knowing I had taken medication, etc. I put this down to anxiety, which, really, is the easiest thing to blame in my world, Oh, it is my crazy, deal with it. 

My husband and I ran some errands Thursday morning, including dropping off my PT referral, and I told him that I was feeling really hyper sensitive and like the anxiety was so bad I was barely hanging on. By the time we got home, I was feeling so completely freaked out that I went to bed for two hours; something I never do. I left once to go buy fireworks with the man and the child and then they teased me about something and I went back to bed. Everything made me cry, which I did off and on again the rest of the day. Again, we both blamed my anxiety about taking new meds, my anxiety about making big changes in my regimen, it was all Teh Crazy and therefore somehow not “real.” I noticed that I couldn’t stop clenching my teeth, and it was making my jaw and face hurt. Chalked it up to Teh Crazy.

I had, a couple of times, sought out the husband to tell him how I was feeling, and like I was not doing okay. It’s not that he ignored me so much as that he didn’t catch on to the seriousness. We both continued to assume that it was my brand of crazy and that it was something I would just have to get through. I took the Ambien and Cymbalta Thursday night. I took the Ambien at 9:45 pm, and at 11:00 pm I was still up, feeling outside of myself, and unable to settle. I consulted Dr. Google and took two Benadryl. Around 12:30 am I sort of fell asleep, in that I could tell I was lying down like I was asleep, but my brain seemed fully aware of that fact and it was like I watched myself sleep until 5:30 am when I was awake, again, for good.

Friday morning I was suffused with dread. My teeth and jaw ached from clenching them. I was beside myself. I plopped myself down in front of the man and said that I did not feel okay, I did not feel right, I felt like the world was ending and like I was not thinking right. I said that I thought the drugs were really, really bad for me.  I asked if I should call the PCP. He said he didn’t know, did I want to do that? I didn’t know, and I let that push me back to the, “I’m just crazy” benchmark. But then it seemed to all get worse. I started walking around the house, pacing relentlessly, unable to sit still. I felt nauseated. I started having trouble talking without quavering. I texted my PCP, apologetically, and related the following:

I’m sorry to bother you. The ambien doesn’t put me to sleep…what little I got (5 hours last night after 10mg) I feel like I’m fully aware that some of me is sleeping. My brain never shuts off. The anxiety is out of control and feels outside of me. I’m shaky and nauseated and can’t seem to stop clenching my teeth. What should I do? 

He called me, and we went over everything I’d taken in the last 48 hours. He said that I was having a very adverse reaction to the Cymbalta, that I was probably withdrawing from the Xanax and that we had changed too much all at once. He told me to take a Xanax immediately and to keep in touch with him throughout the day and to go to the ER if I got any worse. He said I would likely feel better around 24 hours after I had taken the last dose of Cymbalta.

This morning, finally, I am entirely myself again. None of this, apparently, was Crazy, it was an adverse reaction to meds. I wish I had listened to myself better. I wish my husband had recognized the signs more clearly. I suspect we are better educated at this point and I hope that we both get a lot better at not writing off how I am feeling as something that I am somehow at fault for. If I hadn’t called the PCP, if I had taken the meds again last night, I suspect I’d be in the hospital today, and losing even more time from my life.

The PCP and I will regroup Monday. I am not sure how I will feel about going forward with further changes. Probably anxious.

Holy Moly Batman, The Shit’s a Flyin’

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GAWD. –flings self to imaginary fainting couch–

Yesterday…

No, wait, let’s back up. This weekend. This weekend, my husband talked to his parents (mother’s birthday, father’s day). They live in the Midwest, where they have lived their entire lives. They visit two or more times a year, always for at least a week, always at times they decided without really consulting us, and always I end up feeling like a pillow is being held over my face as the Death Star’s trash compactor moves steadily to crush me.

They are not evil, but they are very, very difficult. I cannot be myself around them, my MIL talks constantly, and it’s hard. So hard that the last two out of three times that I have thrown up (not a puker) have been during a visit from them. My gut routinely goes on a panicked bender.  There are a lot of unresolved familial issues that I, the empath, get highly attuned to and distressed by even as they all blithely ignore it. I feel skinned alive, they want to know “What we’re doing today, honey?”

So the FIL mentions that he’s been looking at houses here “by yous” online. The husband does not take this overly seriously, they have threatened to move here for years and years and years and each time the qualifying event came around (BIL finally settled in good job, Grandmother dead, etc) nothing happened. I mean, they bought an RV and use it to camp at a campground five miles from their house. Adventurous they are not.

Moving forward now to yesterday, The Shrink says that I am dealing with a LOT (understatement, and this is with no reference to the inlaws because they were way beneath my radar) and that maybe I really should go to the Mayo Clinic in Rochester, Minnesota. I agree. I go home, gird my loins, and file an online request for an appointment. Then I toodle over to the EDNF boards and find string after string of conversations about how badly many EDSers feel they were treated at Mayo Clinic. So I reverse course and go to the health food store and buy some aloe vera juice and decide to embrace the hippie approach.

Except today I’ve read a bunch of stuff about aloe not being so great so I am confused and resentful and kind of back to square one. This is a secret of EDS that I continually forget: There Is Only Square One, and You Are Always There.

It doesn’t sound like much, filling out an online form, changing your mind, buying something for $12 then wondering when the gastrointestinal flood will arrive, or if it will arrive, or if you could maybe stop thinking about it, anyway, so that you don’t cause it, but what if you’ve already caused it then it doesn’t matter. Etc.

Today my mother’s boyfriend (actually, her manfriend, dude is 70) collected the child so he could do some work for him and I had the morning alone, gloriously, alone, alone! But the MIL called. I managed to not speak to her on the phone more than once a year for several years and then we got rid of the land line and she learned my cell phone number. I could choose not to answer but that would inevitably be the time someone died and I’d feel guilty, etc, and probably end up throwing up and getting the intestinal badness. So I answered my phone.

Wherein, she cheerfully told me that they would be showing up soon! soon! and we would be, “House hunting girlfriend, so put on your realtor hat!”

I damn near flat-lined. Uh, aren’t you supposed to ask when would be a good time to visit? [I can tell you that they probably have, and although I said over and over to the husband that he needed to take charge of it he kept putting it off so guess what? They’ll just appear whenever they damn well please, now]. Is there any sort of oh, I dunno, conversation that should be had about expectations and such before you move here?

Yes, but that’s not happening. They don’t talk in this family, they just barge on through.

They like a house that is two story (who wants stairs when they are nearing 70? My inlaws)–a rarity here, and a pool. They’ve seen one online that she said cheerfully, “Doesn’t have any grass but it has a pool!” Yes. There is a tiny pool in an ocean of hot, gray rocks with nary a living thing to shade so much as your little finger. They are not sure about how “Hispanic” some of the houses look. Please move here and then say that in public while I’m with you, I beg you. We *really* need more white people here who hate the culture and the brown people. Please bring your Midwestern whirly-gigs and cut outs of boys peeing in the garden, that’s so much classier. ONLY WHITE PEOPLE PUT ALL THAT NATIVE AMERICAN/HISPANIC SHIT ON THEIR HOUSES. REAL NATIVE AMERICANS/HISPANICS DON’T NEED TO PROVE IT WITH SHITTY KOKOPELLI GATES.

There is a lot of screaming in my head, so I am self-soothing by organizing my fabric closet and listening to Lucinda Williams on Pandora. Short of moving to Fairbanks in the morning, I’m not sure what else there is to do.

 

 

Jaws of Life

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In addition to seeing the new shrink yesterday, I went to the dentist. For the first time, my jaw felt really unstable when I opened it for the cleaning, and ached throughout–at one point I felt it start to slip, like it was going to slip out of place, but I caught it. I asked the dentist if I could switch to a 9-month recall instead of a 6-month recall to cut down on the mouth-opening.

Today it hurts to open my mouth all the way and both sides of my jaw, at the joints, are painful to the touch and aching. The right side makes a sound that is *exactly* like rotten elastic if I yawn or open it too wide. I have just finished icing each side for 15 minutes and am repeating a mantra, “No more chewing gum for me. No more chewing gum for me.”

I’ve heard of people whose jaws dislocate, and through what they say is blinding pain they are able to get them back in place themselves (can I have a hearty No, Thank You?). I’ve heard of people who have to have their food cut into tiny pieces for them so they can carefully chew it. Sometimes their wrists are bad too, so someone cuts their meat up for them. None of this bodes well, or contributes to a positive outlook.

Because I have this vivid imagination and thought process, as the hygienist was cleaning my teeth and my jaw was aching I was thinking, “But, what about blow jobs? Can I no longer give the man a blow job? What if my jaw dislocated during a blow job?” Dig further, and the question is the much bigger one: How do I maintain an intimate and sexual relationship with my partner if I am becoming less and less -abled? I have no interest in giving up my physical experience with my partner, but what happens as things turn into this sort of, “Oh, no, I can’t lay that way, no, wait, let me turn, no, shit, that hurts my hip….well, okay, just I can’t do this for very long.”

That’s lonely and isolating and gives rise to a lot of negative feelings on my part about my value as a person and my attractiveness and my “chances of dying alone”-ness. You probably don’t remember it, but in Terms of Endearment  there’s a scene between Debra Winger and the man she is thinking about cheating with, John Lithgow (seriously? but I digress). She asks him about his wife, do they have sex together? And he says no, “she has back problems.” And Debra, she says something like have they tried other positions and mimes I think, woman on top as an example. He says, profoundly sadly, “No. She won’t do anything like that.” So they have a little affair. Then she dies, which is what she deserves for screwing around with some poor woman’s husband while she laid at home on a heating pad.

Even then, and I was what, 13 or 14 or so when that movie came out; even then, I thought how much it must suck to be that wife, even as I thought what the system wants me to think, which was that she should have tried harder to keep her man! But how sad for her, was he only married for the sex? One of my deepest fears about all of this is that I’ll die alone. Sometimes I tell my husband, “Just divorce me now! Set me up in a little house and go on and get a healthy wife!”

This hurts his feelings because I’m being an asshole and doubting him but what I’m also doing is naming this tremendous fear I have, that we will not be partners and lovers and friends and the power dynamic will shift until I am just the pathetic patient. Just the sad, sick wife. That sort of outlook just makes me feel breathless and sad.

Fortunately, Debra Winger’s pretty old so she’s no longer a threat to wives whose backs hurt, but there’s probably more where she came from. And heaven knows, my back hurts.

Being Away

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The man and I took a much needed break last week, leaving Friday for Santa Fe and returning Monday. We rarely do this, and especially rarely when the getaway requires taking time off work, hiring someone to stay with the child (and the dogs, and the cat, and the gecko) and ignoring all that might have been done at home in favor of going somewhere else. We also cancelled something we had agreed to do because as it turned out, it was stressing us both out and we weren’t looking forward to it. It was as if prior to going away for a long weekend, we felt the need to also solve all pressing problems prior to leaving.

The Universe, in her wisdom, tested this approach with all her might. On Thursday, as I drifted joyfully about the house, choosing outfits and packing for the trip, I heard the dogs at the food bowls. Nothing unusual there, it’s just part of the background, their tags jangling against the bowls. Then, though, it turned into something else entirely, punctuated by the screaming of the very small dog and snarling from the large dog. The small dog is a Chihuahua named Boris (large Eastern European name for small Mexican dog), and he is at least 11 years old. The large dog is a mid-size Pit Bull named Trixie (for the girl sleuth, Trixie Belden), and she is the dog of my heart and about 5 years old.

I don’t know what happened exactly because I raced out of the room as soon as the screaming started and screamed myself at the big dog, who stopped (the small dog continuing to shriek like a smoke alarm that can’t be turned off). She stopped, she looked me in the eye, and then she swung around and piled right back into Boris, driving him into the wall, him still screaming as she had again gotten him by the neck. I did exactly what one is not supposed to do and dove into the middle of it, hitting Trixie in the face and screeching at her to stop. She dropped to her belly, hackles still up, and I grabbed Boris (who considered biting me, as he was scared and hurt) up off the ground and the child dragged Trixie to her crate.

So, problem number one: Canine Death Match. Gone was the joy of packing and in its place dread, fear and loathing.

Upon examination Boris appeared okay, but his neck was soggy and sore (we later found one small puncture wound, but that was all). We developed a plan to separate the dogs in our absence and revised the time we expected to leave, since Death Match precluded packing. We were very lucky that we weren’t taking one dog to be cremated and the other to be euthanized, and that fact shook us up.

The next morning we arose, again determined to have this weekend out of town. We promised ourselves we’d leave by 9:00 am. The child appeared and announced he felt like throwing up, which he proceeded to do. I felt robbed. I felt I was being cheated out of something I had almost gotten to grasp. This is not an uncommon ailment of this  child, and it responds to stress, and it is always over pretty quickly. Sometimes mere hours after I’ve called him in sick to school, he is eating soup from a can and claiming to be starving. But then there’s the idea that I’d be a bad mother if I didn’t sit at home and watch him watch TV.

We arranged to have my mother check on him, and then the sitter would be there in the afternoon.

We went away. We felt a bit like we were escaping, we almost didn’t get out of there but at the last minute, we did.

It was entirely, completely, worth it. We returned to a child who hugged me at the door and waited an hour before telling me he wished I’d not come back with all my rules and demands. The dogs seemed to have buried the hatchet for the time being and were back to coexisting.

Sometimes, the harder it is to get away, the more you need to do it. If only to find that your absence won’t really devastate anyone, and the world will remain pretty much the way it was when you checked out.