Update - Two Years On

Wow. It’s been a long time since I’ve been here. The site looks a bit different; some of the faces (well, the names anyway!) still look the same. Not sure if that’s a good thing or a bad thing! :)

I’ve been through a lot in the past couple of years. Physically, I’ve been dealing with severe, rare, chronic pain condition that I thought at times was going to take away everything I cared about in life, including hope for the future. Emotionally, I wasn’t able to deal with much aside from survival for the first two years, but over the past year I have been through a tremendous evolution that wouldn’t have been possible without the illness and all of its ramifications, so I guess it’s true what they say that no cloud is without its silver lining.

I’m still ill, unfortunately – always will be. But I’m being treated by a wonderful neurologist now, and I’ have an excellent and experienced neurosurgeon who’s willing to have a go at me if it comes to that. Most importantly, I now have a treatment plan that finally seems to be keeping the pain at bay.

Of course, my situation at home is unchanged – which is one reason I’m back again. But going through the process of getting a handle on my condition has had the unexpected side effect of giving me tremendous insight into my life and how I ended up living in a sexless marriage.

I’m afraid I may be about to go on at great length. I’ve tried to fight it, but being verbose is apparently just who I am. And in any event, boy – do I have a story to tell...

For anyone who is willing to slog through it, I hope you will find something of interest here. Maybe even of value. Because my life has been altered fundamentally by the things I’ve learned in the last year, and if there are any lessons to be learned from my story, then I am happy to share it. I received much support and love from this board at a time I really needed it - I would like to give something back if I can. And I’d also like to let all the people here who offered friendship to me at a time when I wasn’t capable of accepting it, because I didn’t feel like I deserved it, know how my story turned out. Although of course it’s still being written day by day. I’m very grateful to you all… :)

So. As I said, at the moment, my situation at home remains the same. And you know things are bleak when you realize that more hospital technicians have seen you naked in the past year than lovers have in your entire life… :) But I stumbled upon some wisdom recently that’s in the process of changing my life. The story of how I got here is convoluted – and hilarious at times, so feel free to laugh! I have; in fact, I’ve done more laughing recently than I have in many, many years. And it’s felt really good.

I’ll try to get through the convoluted part as briefly as I can – no promises, though. I’m a talker, and I’ve been in solitary confinement for the better part of three years now! But as people often tell me about my life, too – honestly, you just can’t make this stuff up… No one would believe it. :)

To begin with, my illness. A horrible, hateful thing that stole years of my life and most of the things in it that were important to me, including years with my children that I’m never going to get back. At times, it almost stole my will to live, too. But it never did get that last, tiny little spark of hope.

It came close, though – I spent far too many nights holding on to my jumbo-sized bottle of pain meds, fighting the urge to just get it over with already. Because, really – if I ever managed to get my marital situation sorted, I’d still have the pain. And if I ever managed to get the pain under control, I’d still be stuck in a cold, sterile, loveless marriage. But I have children, unfortunately. Children who still need their mother. And I’d still like to find some happiness some day, dammit…

So I’d put the bottle away again, and hunker down through another long, lonely, painful night. The isolation was almost as unbearable as the constant pain; I was bedridden for the better part of two years and am still mostly housebound today. As a result, I’ve lost my job, and almost all of my friends. My family, of necessity, went on with their lives without me.

But then, one day, a miracle happened. Well, okay – it was actually over the course of many months, but that doesn’t have the same dramatic impact, does it? :)

First, on one of my bazillion trips to the ER, they finally hit on a drug that worked to control my pain. Then, I eventually found my wonderful neurologist (I almost literally worship the ground he walks on…) and he put me on a drug plan that I could follow at home, without having to be rushed to the hospital by ambulance every other day to be treated by IV in the ER. And through him, I even found a neurosurgeon who’d never seen a case of what I’ve got before, but was willing to have a go anyway, if it came to that. I’d been turned down by every other neurosurgeon I’d seen, so this was a miracle, too.

The upshot of all this is that I am getting close to celebrating my first anniversary of being pain-free. I still struggle with many drug side effects, as well as the psychological effects of this disease, but as compared to where I was when I started, this feels like paradise!

Okay, now the fun part starts. Because my illness is resistant to treatment, over the course of the first two years, my family doctor, as well as every neurologist, pain specialist, hospitalist and ER doctor I’d seen, had thrown an entire pharmacy’s worth of drugs at me. None of them worked, but my situation was so dire that I was kept on all them anyway, “just in case” any of them were helping even a little bit. I had medication delivered by every available route – by mouth, by injection, by IV, compounded at great expense into topical creams – even shoved up my… Well, let’s just say that all the bases were covered! :)

Since I was already on a number of drugs for some existing chronic health conditions, including heart failure resulting from a particularly virulent flu (flu shots - get your flu shots, everybody!!), I believe at one point I was on about twenty-six different drugs, that not only each had their own unpleasant side effects, but combined in very interesting ways to cause some unintended – and often hilarious – side effects as well. I spent several years as a human petri dish, attempting to prove the saying that the cure can often be worse than the disease!

But I was managing – barely, but managing – until last summer, when my family doctor decided to increase my dose of one particular, newer anti-seizure medication that he was big on at the time – although not any more… :)

It took months to figure out the full extent of the damage this drug did to me, but among other things – it made me aggressive as hell. Like the worst PMS you can imagine, magnified by a thousand. Now, you can imagine how dangerous this was in someone who was already tense from years of sexual frustration, having to deal with an “idiotic” husband that she blamed for being in this state… :) I quickly asked my doctor to reduce the dose again, because I literally feared for my poor husband’s life there, at one point!

I saw an item in a humour column in Reader’s Digest during this time period – a woman was talking about how wonderful her husband was, because once, while she was short-tempered with PMS, she asked him grumpily if she wasn’t being clear enough about something, and he replied “Of course you are, dear – I’m just being particularly stupid today.” I didn’t know whether to laugh at the obvious irony of this, or cry because, dammit – why couldn’t my husband be that self-aware? :)

In any event, by that time, much of the damage had already been done, including the events that initiated the chain reaction that would eventually ended up saving my sanity, perhaps my marriage and possibly my very life.

And it all started with Eminem… :)

Well, okay – it actually started with a bout of mania that turned out to be one of the side effects from this particular drug, but which led me – in a roundabout way involving his Recovery album, the fact that over the last few years I’ve been spending the better part of my life in waiting rooms of one sort or another, the fact that popular radio stations seem to only play the same four or five songs over and over – and over and over – again, and the fact that I am a diligent mother who has a teenage daughter with an iPod that gets policed regularly for appropriateness of musical selections – to Eminem. Of whom I knew nothing at the time except that, years ago, he’d been banned, or some politician looking for a spot on the evening news had tried to ban him, from playing in the city in which I grew up.

By the five hundredth repetition of Love The Way You Lie, I came home from yet another medical appointment one day, and finally remembered that I’d been meaning to Google who the #$%^ it was who performed that song that was always playing on the radio, but at a volume at which I couldn’t make out any of the words. At which point my daughter said, oh – I have that on my iPod! Which led to me looking up said lyrics, which led to me thinking – hey, interesting lyrics, wonder what else he’s done, which led me to discover that his childhood was eerily reminiscent of my own.

For fun, I started compiling a list of things we had “in common” – not, as some idiot therapist recently suggested, because I thought there was some hidden message in this that the universe was trying to send to me, but merely because I was fascinated to discover someone who had grown up with a mother who might potentially parallel my own in her dysfunction. And as I explained to said idiot therapist - yes, I do know what a “coincidence” is, but I reserve the right to be amused by the sheer number of them, anyway. From large things, like both having a best friend who died suddenly under tragic circumstances, to minor stuff like both being left-handed and sharing the same three initials. My nickname in university was M-squared. Not nearly as catchy, I grant you – but I’m as much of a nerd and a science geek as the nickname suggests, and I found compiling this list of similarities entertaining.

In any event, I’m not usually a celebrity-follower, but being home day in and day out too sick to do much else had left me with lots of time on my hands and I eventually stumbled across an Eminem chat group, where I quickly met someone who had so much in common with me that it was scary. In fact, we each even went through a brief, humourously paranoid period (simultaneously - which is funny in and of itself) of wondering whether we had, in fact, finally lost our marbles and split our personalities a la Sybil and were actually just writing to ourselves. Given it had actually crossed my mind by that point to steal a volleyball from the kids, slap a hand-print on it and start talking to my new best buddy “Wilson”, this didn’t actually seem outside the realm of possibility to me… :)

Our similarities were not in the day-to-day stuff, where we are actually often quite different. But rather in our psychological issues and, more importantly, our coping mechanisms, as we soon discovered. Which was a bit mind-blowing considering both of us had been labouring our whole lives under the delusion that we were unique in this – and that it was terribly shameful – as a result of which we had never shared it with anyone else before.

Because we had so much in common, and I suppose because the nature of our relationship felt anonymous, even though it wasn’t, we started sharing things with each other that we’d never shared with anyone else before. I had never even confessed the fact that I was living an involuntarily celibate lifestyle to anyone before, other than on this site. I was always far too ashamed of that, because it made me feel like I must be completely worthless if even my own husband didn’t want me that way.

But it turned out that she, too, has been living in involuntary celibacy for just as long as I have, so we were able to talk about how this makes us feel – and how we got to this ridiculous and painful place in our lives.

I’ll try to make the next part brief – the decision was soon made to take me off this mania-inducing drug entirely, since we were beginning to realize it was causing many other problems besides that, including causing an acute glaucoma that almost blinded me. But it’s a drug you have to be weaned off slowly, and I had side effects from that, too. Terrible depression, and suicide ideation, can be side effects of this drug, especially when the dosage is changed. And I went through this in spades. Meanwhile, I was talking with my new friend about my childhood – from which I suffer some PTSD – and this was stirring up all kinds of memories and feelings that I wasn’t in any condition to cope with at the time.

Now here’s the next funny part – the first, of course, being a middle-aged woman suddenly becoming a huge Eminem fan much to the horror and embarrassment of her teenage children. It came to my attention that it was this drug, interacting with yet another one I was on, that was causing another kind of mania that I was struggling with at the time – yep, I had a raging case of nymphomania going on, too. Just what the housebound person living in a sexless marriage needs most, right? Good God – there were nights I thought my arm was going to fall off! I was considering calling the Guinness World Record people – except that I’d looked on-line, and they didn’t seem to have an appropriate category. And I’d made so many purchases from the on-line adult toy store that I was running out of places to hide them in the house… :)

The worst part was, when I told my doctor about this – I’d finally Googled the solution myself – he said he’d done it on purpose!! Because one of the other umpteen drugs I was on was known to lower libido, and he was trying to compensate. You know, because this would have been a problem for a normal married person. Well, I said - you overshot... And you might have ASKED me first…because maybe I didn’t WANT my libido anymore, since it’s never done anything but cause me misery and frustration anyway. But I guess that’s what you get for not being honest with your doctor – he had no idea my husband and I hadn’t had sex in over a decade, and not much before that, either.

Then the trauma that I was going through caused my husband to finally confess to his childhood issues – we’ve been together almost 25 years, and I always knew there was abuse in his past, but he’d never been able to face it before. And when he finally did, it was much worse than I’d ever imagined.

I went through six terrible months where I was sure that between the illness, my failing marriage, the PTSD I was going through about my childhood issues, and other family crises that were going on at the time, I just wasn’t going to survive. I didn’t think that I wanted to.

But a few months ago, the drug effects finally started to lift. And I finally got some help – I’d been trying to get my doctor to arrange some therapy for me for months, but it’s tough when you can’t afford to pay for it yourself. There are huge waiting lists everywhere. But I finally got in for a few sessions of short-term crisis counseling – and through that, it was identified to me that part of what my mother did to me constituted sexual abuse. I’d never made that connection before, in all these years – because I’d never been physically harmed. It was all psychological abuse with her. But apparently it turns out that sexual abuse doesn’t have to include a physical violation to scar you for life. And the minute it was re-framed for me in this way, I was suddenly able to see that none of it was my fault.

I’m not a horrible, unlovable person who doesn’t deserve to have any friends, and deserves to live in a sexless marriage, too. I was just an innocent child, victimized by a mentally ill, alcoholic mother – and I’ve been living with the after effects of that my whole life, too ashamed to even talk about it. Although I’ve been in and out of therapy ever since I left home thirty years ago.

And it turns out that my husband is not a “refuser”, but a fellow survivor of childhood sexual abuse – horrendous ******, as it turns out – that he’s never been able to face before, and which has left him unable to be intimate with anybody, not even his wife.

But unbelievably – none of these revelations are the part that changed my life. I’d known that we both had sexual issues stemming from childhood through our entire marriage, even if I didn’t know exactly what they were, and even though I wasn’t ever able to admit this to anyone – including myself, at times.

It was actually my relationship with my chat group friend that started my recovery. Because I’d lived with shame issues all my life, I’d never actually been honest with anyone before. I always wore a mask – tried to be whatever I thought people wanted me to be, while hiding this terrible blackness inside me that I was sure I’d be hated for, if I ever revealed my true self. But for the first time in my life, I was honest and genuine with her – she got the real me, in all my ugly, sordid splendor. And I’ve gotta tell you, it was pretty ugly and sordid after 50 years of hiding and lying and covering up. And unbelievably, she still liked me. And vice versa – because she’d never been honest and genuine with anyone before, either.

We’ve been chatting daily now – and I mean, pretty much 24/7 (it’s a good thing we’re not exchanging old-fashioned letters because we would have burned through several forests worth of trees by now) – for almost a year. I love her dearly, and can honestly say she’s the first “real” friend I’ve ever had in my life – because no one else has ever gotten to know the real me before. (Not even my husband - we’re extremely co-dependent, but there are a lot of things that we’ve never even been able to tell each other until recently.) She’s definitely my best friend, and I don’t know where my life would be right now if I hadn’t met her and taken a chance on reaching out and opening up to her. Well, I do, actually – but it’s not pleasant to think about… :)

And even more remarkably – I’m hers, too. I’ve never been anyone’s best friend before – I don’t normally let myself get that close to anyone. But it feels really good!

Having her support gave me courage, too. The courage to reach out further – I talked about my issues and my coping mechanisms with my husband first, then with my doctor of a quarter century... Which I prefaced by saying, you’ve known me a long time, but you don’t actually know me at all. I’d like to introduce myself to you… :)

The more I talked about these shameful secrets, the easier it got. Next, I talked about it in therapy. I saw the idiot first, who told me all I had to do to “fix” my problem was leave my husband if I wasn’t happy – or sign up with Ashley Madison if I just wanted to get laid. Pretty much the reaction I’d always expected, which is why I’d never talked about this stuff in all my other rounds of therapy in the past. He didn’t seem to get the point that it’s not lack of opportunity that’s the problem – although being housebound these days sure does suck pretty badly… :) It’s the inability to give myself permission to be sexual, or even to accept that I deserve to be.

But I switched to a different therapist, and she’s been wonderful. Only a few sessions, but she’s already done me a world of good.

Meanwhile, I’d found some books on my own that seemed like they might be applicable to my situation, and this is the part I really want to share. Many of them have been useful, but one in particular has hit home so precisely that it could have been written specifically about me.

I had asked my doctor, when I started talking about my shame issues, whether it was possible to be a sex addict if you never actually had sex. I am absolutely obsessed with sex, and have been since I was a child – I just can’t seem to have it, for the most part, with other people.

But for most of my life, I’ve been consumed about thoughts like, why can’t I have sex? Why won’t anyone have sex with me? Are other people having sex? That’s so unfair!! And I’ve spent a lot of my marriage looking for evidence of my husband having a sex life without me - not fair, either!! And ************ compulsively for stress relief and to avoid feelings that I didn’t want to feel – like shame, loneliness, self-hatred, and so on. Which worked fine, until I got married, and no longer had privacy. Then for years I thought I was going to lose my mind without any outlet, so I switched to food instead – and added sexual feelings to the list of feelings I was trying to avoid having.

Before I was married, I acted out every chance I got. On my own, for the most part, but also in the few relationships I had – which were not what you might describe as “healthy”! Although they sure were fun… :) They were always compulsive and single-minded; I lived with a guy for a year or so when I was young, for instance, and pretty much all we did was have sex.

But my mother had done a pretty good job of beating the “female” out of me so I wouldn’t be competition for her – so it was always really hard for me to know how to act when someone was interested in me that way. She was cruel, too – doing things like having guys she worked with call me and pretend to ask me out, then when they’d finally convinced me of their sincerity and I’d said yes, they’d laugh and tell me no one would ever be interested in an ugly little b**** like me.

It didn’t’ help that I was a fat, brainy little nerd as a kid, and socially withdrawn because of my home situation – so I used to get a lot of this sort of teasing at school, too. But once someone convinced me they were serious? Well, that’s when the wheels came off. But mostly I managed to push people away before it got anywhere near that point - and then I'd add another entry to my list of rejections that proved I was a worthless, unlovable person.

Being rejected by my husband was sort of the last straw in that regard. If he didn’t want me either, then I really must be unlovable. After that, any chances I did have, morals aside – because I’ve had my share of opportunities to cheat over the years – I simply couldn’t go through with. Couldn’t even consider, no matter how lonely I was, because I’d convinced myself that I didn’t deserve to have a sex life. Not even with my husband, which is why I never pushed him to address this. Oh, I complained about it a lot, but I didn’t really want to fix it. I’d convinced myself I didn’t want him anyway, because the alternative would have been to have to face the fact that I didn’t feel worthy of being with anyone that way. It was much easier to just go on feeling rejected.

Anyway, because of all this weird, obsessive behaviour, I’d eventually looked up sex addiction and the “core beliefs” really hit home to me. They seemed to describe me to a “t”. So I asked my doctor if it was possible to be a sex addict if you never actually had sex – and he said it was possible, but this just never felt to me like it fit my circumstances “just right”.

However, I was perusing our library website one day, and came across a book entitled “Sexual Anorexia: Overcoming Sexual Self-Hatred”, by Patrick Carnes. It sounded like something I should look into based on the title alone, so I checked it out immediately, not even knowing for sure what it was about – but it’s turned out to be a God-send.

The author explains that most dysfunctional behaviours run along a continuum – so, for instance, eating disorders run the gamut all the way from compulsive over-eating to anorexia, with stops at the binge-purge of bulimia along the way. Sex addition is akin to compulsive over-eating, but he said sex researchers were just beginning to discover (this book was written about 15 years ago) that there was an equivalency to the other eating disorders, too. The gist of it is that sexual anorexia is just one of many dysfunctional coping techniques that occur in people who have had traumatic childhoods, falling into the category of “deprivation” behaviours that also include such things as constantly putting other people’s needs ahead of their own, or refusing to spend money on themselves (financial hoarding).

Sexual anorexics in their purest form don’t allow themselves to think about sex at all, while binge-purge behaviour can express itself in many ways – such as being celibate for years, then having a series of one-night stands. Or being anorexic in one aspect of your life – such as in your primary relationship – while being compulsive in another aspect – like cheating, or ************ to excess. Bingo! The latter one is me… :)

Here’s the interesting thing to me – the first three core beliefs are the same in every type of sexual dysfunction, which is why they resonated so strongly with me. Only the fourth differs: In addiction, the fourth core belief is that “sex is my most important need”, while in anorexia it’s “sex is my most terrifying need”. And the crux of the issue in sexual anorexia is that you can’t deal with having intimacy and sex simultaneously, because sexual anorexia arises from shame issues and/or lack of trust in intimate relationships caused by having some sort of traumatic childhood.

There are a host of personality traits that sexual anorexics commonly display that I identify with 100% - as does my husband. And my on-line friend too, for that matter. I’m in treatment for this at the moment, and I have a lot of work to do yet – but even identifying and understanding the problem has been life-changing for me.

I only wish I’d known about this sooner. Ten or twenty years ago when I could have salvaged my life would have been nice, so I didn't have to spend all these years suffering through this miserable, lonely existence. But none of the doctors or therapists I’ve talked to about this recently say they've heard of it before, either. Even though now, as I look into resources for myself, I see that there are actually 12-step groups that focus on this specific issue. It makes me really sad to think of all the years I’ve wasted, and I only hope that it’s not too late to turn things around for me. I’m damned well going to try – because I still want to experience some happiness in my life some day. As well as get laid again at least one more time before I die! :)

So. That’s my story. Which I’m sharing in case it helps even one other person. Because living like this is a nightmare, and if there’s a way out, then we should fight for it with every ounce of strength we've got!

Cheers, all… May we all find a way out of our unhappiness someday. :)
aamater aamater
46-50, F
4 Responses Sep 19, 2012

Aamater, thanks for this update. I wondered what had happened to you. I am glad that you have found ways to manage your physical pain. Now, like many of us here, you are learning ways to deal with the other pain. My heart goes out to you (and your H). I hope you drop by from time to time with a progress report.

Thanks, Chai - I hope things are still going great for you, too! I actually think of you often, and how kind you were to me. It meant a great deal to me, and I'll always be grateful for your friendship at a time when I needed it most!

You, and a few other wonderful people here, were so good to me at a time when I had trouble accepting it, and probably didn't really deserve it. But it's one of the reasons I wanted to close the loop - to thank you again for being there for a stranger, during some of her darkest hours - and let you know that it's one of the reasons I was able to hang on, and eventually find my way out of the blackness.

God bless you, and much happiness in your future! :)

p.s. You may get more responses if you edit the first part of your post about the chronic pain and treatment. The real crux of your message begins at: "It all started with Eminem"

Yeah, I'm sure you're right. But that's okay - I don't mind if I don’t get a lot of responses – although I would have needed that before, just to make me feel worthwhile... :)

For me, though - my illness is kind of integral to my whole story for a couple of reasons. First, because my husband is not only my "refuser" spouse, he's also had to be my caretaker since I got sick. This has made it impossible for me to just up and leave him, much as I’ve wanted to at times – and might have, if circumstances had been different. But a lot of people – therapists included – have trouble understanding why I felt so trapped here. When you’re completely reliant on someone and have no way of replacing that help – well, it’s hard to walk out on someone when you literally can’t walk without their assistance.

Second, were it not for my illness, and all the meds and their wondrous side effects that delivered me to Em and all the good things that followed from that, I wouldn't be at this good point in my life now. I'd either still be here, stuck in my dysfunction, or, even if I’d been able to leave, either out there on my own, or - dare to dream - with someone else, but still stuck in my dysfunction in any event.

But I do get what you’re saying – I completely agree that it would be much more efficient if I’d just STFU with all the TMI, already! I think there’s just an (unattractively self-pitying…) part of me that still feels righteously sorry for myself for having had to go through this on top of all the other crap I’ve had to go through in my life – enough already!! How much does one person have to endure? So I’m still looking for the sympathy vote wherever possible – and I don’t have many places to look for that! Hey, I should get points for honesty if nothing else, right? :)

LOL!!! *hands over 3 honesty points* Here you are, ma'am! You've earned 'em! *grin* Gotta love introspection & self-knowledge. You GO, girl! After all, if we can't be honest with ourselves and others when we're completely anonymous -- when CAN we be? You have my sympathy & my respect. Hope you'll hang around EP awhile this time and add to the collective wisdom!

Thanks!! *aamater accepts honesty points and feels validated in her suffering*

:)

Wow. You didn't lose me. (((hugs))) Doesn't it feel GREAT to have a best (girl)friend? I'm so happy for you! While our issues/experiences are far from identical, I'm very familiar with feelings of shame associated w/the sex act coupled (paradoxically) with sexual obsession and addiction. Our mothers can really do a number on our psyches, can't they? And how I WISH, WISH, WISH someone could find a way to end childhood sexual and/or emotional abuse! I wish I could adopt every sexually abused child in the WORLD.

The good news is, many of us hang in there, find coping mechanisms and learn to lead "normal" lives. Looks like you're well on the road to healthy recovery. Thank you for sharing some of the tools that continue to help you. Hang in there. I believe in happy endings. :-)

Thanks! Actually, I did adopt two kids who'd been sexually abused - my wonderful daughters! - and giving them everything that I never got as a child has been the greatest joy of my life! They're teenagers now, and seeing how well they're doing gives me hope for my own future - I just have to give myself permission to let people love and support me, too. It's amazing how many of them there actually are, and always have been, once I opened myself up to the possibility! Including some real good folks right here on this board... :)

And yes - it feels wonderful to have someone who loves me for me - the real me - for the first time in my life! May there be many more in the years to come... :)

That was so long....you lost me O_O; Sounds like you're happier, though. Good for you!