AfflictionAteHer

This blog is officially over.

When I began afflictionateher.com last October, I was trying to come to grips with the idea of being disabled. I felt very sick, and I had given up on trying to get back to the “old” me that seemed to have slipped away with time. I certainly didn’t imagine this blog would lead me somewhere new – I thought I was creating a blog to lead people to information about mental illness.

My withdrawal symptoms from the Neurontin, Lamictal, and Seroquel are all but gone. I’ve learned to stay away from Symbicort and Protonix. I’m clear headed, and I’m sleeping well (naturally). I’m breathing easier than I have in years – and for the first time in years, actually, my Albuterol “rescue” inhaler lasted for more than a month (for 60 days, actually). I’ve cut back on caffeine by half or more, and am limiting myself to a couple of diet sodas every day.

If I had to sum up the conclusions I’ve drawn in the past 8 weeks, it would be that each of the pills I stopped taking was causing the specific symptoms I thought I was taking it for. Ironic, eh? And while it may seem that my conclusions would be attached to new beliefs about the evils of the drug industry and the shortcomings of the medical profession, they are not.

I’ve lost 12 pounds – or had, last time I checked (more than that, maybe, since then). I’ve lost congestion. I’ve lost dizziness and wobbly legs. I’ve lost paranoia and disorientation, sudden grief and sudden fear. I’ve lost chronic indigestion and nausea. I’ve lost feeling like I have a jackhammer in my chest. Chronic dry mouth and sinus problems are likewise lost.

I’ve gained breath. And life.

The story of what all this means to me is one I haven’t written, yet. This is the first time since 1996 that I have been so medication free, and I’m not even sure why I was able to pull it off this time. I seem to be moving forward in to a new chapter in my life; moving forward in a way I probably have relatively less control over than I would like to think.

Affliction did not eat her, after all.

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Before I forget, and because I want to come back and write more about this later…. but mostly because I don’t want to lose this resource, here is a link to a wonderful booklet from The Icarus Project: Harm Reduction Guide To Coming Of Psychiatric Drugs.

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In the middle of cleaning out the cat room last weekend I moved a box of old diaries in to my office. These were some of my less-interesting diaries, and I hadn’t read thru them in quite awhile, but I pulled one out this morning and thumbed thru it.

The diary was written exactly 8 years ago. At the time, I was living in an apartment and working as a Lotus Notes web developer for Tivoli. I wrote in my diary every day, and what’s most notable is that I was writing the same thing 8 years ago that I write about today – with one important exception.

“Is my insomnia a compulsion, or do I feel compelled to watch the 11pm NYPD Blue because I’m bipolar? And is bipolar what the tight feeling is in my chest or is it stress? Does stress cause all this or is it simply magnified by mental illness?”

“I feel physically revved up, but too tired and unmotivated to do anything about it. The physical feeling is in my chest – it feels like adrenaline.”

“… I found some references on the web this morning I wanted to think about. Each referred to potential problems with med’s I take a lot of every day – Neurontin and Benedryl. They can cause hypomania. It could explain a lot. Mine’s gotten worse since I began increasing the Neurontin last October. And the problems — songs stuck in my head, lip and jaw biting, racing thoughts (when I wake up, especially), and grinding my teeth — have just gotten worse and worse.”

So what’s different? What’s different is that this time I’m proceeding through my winter with the very clear understanding that the medications I take every day – and I have yet to have a single day where I don’t take something – are causing the bulk of my physical (and a lot of my mental) discomfort. 8 years ago I was still trying to use drugs to balance everything out – as evidenced by the fact that on February 26, 2002, I started taking Lamictal on top of the Neurontin and Benedryl that I already knew were causing mania.

I love my diaries. Love how I can look back through them and realize that something that seems new is actually very old, and see that I’ve been following the same path (even if only in a circle) for so long.

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After my fabulously normal, good-night’s sleep Monday night, and my good-day’s recharge on Tuesday, I found myself sleepless on Tuesday night. I was determined not to take anything to help me sleep – the problem was that I didn’t do anything practical to help myself sleep, either. I went to bed around 3am, then got back up and didn’t try to go back to bed until about 4am. Once back in bed I found myself once again short-sheeted by Stella cat, but didn’t kick her out, and I was way too hot but didn’t bother getting up to push back some of our covers. Instead, I laid in bed and tossed and turned and sweated and didn’t get much sleep.

So I was really sleep-deprived, yesterday, but more than that I was overwhelmed by allergies, again and – the worst, really – that racing heartbeat/too tired to do anything feeling I get when I’m low on sleep. I tried to take a nap but couldn’t relax. Once I finally did start to relax (by late last night) a skin allergy suddenly kicked in. This is the kind of skin allergy that causes intense itching all over my body, a kind of non-stop, non-specific traveling itch that’s impossible to satisfy. I didn’t want to take anything but it finally became too miserable to bear (and there was no way I was going to be able to sleep in the midst of it), so I took 100mg of Benedryl and rubbed spray Benedryl on my arms, legs and neck. An hour and a half later it finally started to calm down, and I was able to go on to bed around 2:30am. This time, I kicked the cats out of the bedroom and removed some of the extra covers that had threatened to suffocate me the night before.

What I’m finding, off other sleep aids, about sleeping is that I go to bed, get very comfortable, finally begin to drift off and then, just as I’m about to slip over the edge in to actual sleep it’s as if a switch gets thrown and I am suddenly wide awake. Not just wide awake, but irritable and anxious, as well, because I’m afraid I’m going to toss and turn all night, and because it seems as if a great night’s sleep has just been snatched away from me. I did finally manage to fall asleep, not sure what time (around 3:30, probably), so at least I got a few hours in. It sounds awful and it’s very uncomfortable but, again, I’m actually still getting more sleep than I was when I was still taking Seroquel, Lamictal and Neurontin; before I stopped taking them, I was going to bed around 3am and getting up a few hours later – I may not have tossed and turned on my way to sleep, but I wasn’t getting much sleep, regardless.

A couple of thoughts about sleep and me. First off, let me say that I think I sleep better if I don’t take anything at all (Benedryl included) before bed. All medications have side-effects, and that includes antihistamines. Second, the next thing I need to work on about sleep is simple sleep hygiene. It’s been years since I had to worry about drinking caffeine before bed, or about sleeping in an environment that’s really conducive to sleep. Seroquel always knocked me out no matter what. I don’t have something that’s going to “knock me out no matter what” anymore, so I’m going to have to help myself instead.

Still itching a lot this morning, but not as badly as last night. I have a feeling this itching episode was caused by taking the Trazedone and Seroquel last weekend – really, it feels exactly like withdrawal, even though it’s been weeks since I stopped taking those medications. The only other culprit I can think of would be Symbicort, which I casually used more than usual the day before and night of.

One of the bloggers I follow made a post recently saying she was thinking of getting off her Seroquel. Her dose is four and a half times higher than my highest prescribed dose ever was, and she seems to be in the midst of a crisis the likes of which I haven’t had to face in a decade. I wanted to respond to her post by encouraging her to follow my lead, but I don’t feel qualified to make that suggestion. On the one hand, in reading her posts it seems clear that the physical and mental effects of the medications she’s taken over the past few years are worse than the crises that preceded them. On the other hand, I may be projecting my own personal experience in to any suggestions I make. I am beginning to feel quite strongly that psychopharmaceutical medications are bad, bad news and that we’re all (in the mental health blogosphere) suffering from the delusion that we are mentally ill – a delusion supported by drugs that make us feel more ill than we would if we had never taken them. But that may well only be my own experience. Maybe these other bloggers are suffering from a disease I only ever imagined I had – maybe I only think I can relate to them because we’ve taken the same medications and suffered the same side effects.

Sleep is a terrible struggle for me right now… but I have to admit that I feel much more emotionally stable off medication than I did on it. I feel slightly less physically ill than I did while on the medication, too.

Speaking of which: I’m going to give myself another week or two of trying to figure out if the albuterol, Symbicort, and Benedryl are behind the rapid heart beat/shakiness thing. If I still haven’t figured it out by then, I’m going to take a deep breath and go back to the Heart Hospital for another full check-out. I worry about heart disease because it runs in my family and because that’s what these symptoms feel like. Paradoxically, I’ve expressed concern about these symptoms and heart disease for years and none of my doctors have been concerned (my asthma doctor thought it was probably Costochondritis, but I don’t buy it because the symptoms I actually experience are not the symptoms in the descriptions I’ve found online). I’d like to get to the bottom of this. If I didn’t have these final, lingering symptoms — rapid heart beat / shakiness / transient dizziness / chest pain — I’d feel like I was home free. Maybe it’s heart disease, maybe I’ve developed a super sensitivity to caffeine because I drank such huge quantities of it all the time when I was younger. Maybe I’m still going through withdrawals, in some ways, from the Seroquel, Lamictal, and Neurontin. Regardless, I am determined to get to the root of the problem and to eradicate the cause.

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Writing that post this morning was awesome in just the way I love about writing; that way that shows you something… not new, exactly, but true. That way that takes something I’m hiding from the rest of the world because I’m not sure it’s right and puts it in the light and makes me think, “well heck, sure that’s right, and what a relief.”

I’ve lost my entire readership. I haven’t been posting at other people’s blogs, and I’ve backed almost entirely away from writing about mental illness as it relates to myself. Instead, the past several weeks have been about an experience so personal that I doubt most people find it interesting at all. Cleaning house? Not feeling good? Where’s the exciting stuff?

But they’ve been exciting weeks to me – very exciting weeks, and in ways that I haven’t gotten around to trying to envelope in a story, yet.

But back to this morning’s post, and to the events of the weekend and yesterday that came before it…

When we were in the thick of cleaning, on Sunday, I found myself in a panic. It wasn’t a panic that was limited to the amount of cleaning everything about our house really requires at this point, and it wasn’t specific to my health. It was a generalized anxiety that had to do with having been so purposely quiet about the things I’ve been so quietly trying to resolve in my life, lately. How to explain to David that the mess our house is in isn’t something that just suddenly crossed my mind? How to confront the problems in my life that I have so determinedly ignored for so long? How to even take myself seriously about getting healthy again when I’ve done nothing about just that for so many years?

At one point, Sunday evening, David found me simply laying on my back, staring at the ceiling, in our new bedroom. He hugged me and kissed my cheek, and I said, “I keep telling myself this is just a start. We will keep cleaning. We will get the house fixed. We will get rid of some of the stuff around here that never gets used and that’s falling apart and just gathering dust.” It was such a relief to have him hug me and such a relief to say this when all the anxiety was threatening to yell and blame, instead. However… my words pushed him away as literally as if I had put my hands on his shoulders and shoved him.

“You’re only allowed to fixate on one thing at a time,” he said, standing up and trying rather unsuccessfully to smile.

“Wait, what do you mean?” I asked.

“You can fixate on cleaning. Or you can fixate on mold. You can fixate on dust. You can fixate on furniture. But you can’t fixate on everything all at once.”

“But it is everything,” I tried to explain (as he turned his back and left the room). “It is everything all at once. It’s too much,” I added to thin air, as he left me.

And I did feel left. But I felt that it was all my own fault, too. I remembered our very first real date. We’d gotten together casually a few times, but this was the first date where he came and picked me up and took me somewhere. It was my first ride in his car. I remembered the first time I ever saw his apartment, and I remembered moving him out of the same apartment when we moved in together. I remembered the house on Avenue H. I thought about my own housekeeping habits and how they’d started to fall deeply apart a year or two before I met David, and I wondered if I have a tendency to hoard, and if I do or not why I picked someone who does. I thought about the fact that I’ve always gotten rid of most of the things I’ve ever owned and I counted (again, I’d been doing it all day) the things I could see in our home that are actually mine and not hand-me-downs or things that came with David: my clothes, my toiletries, my desk, my art supplies, my books, my boxes of stuff from my last real office, my boxes of diaries, my silverware, my small chest of drawers and 2 chairs from Pottery Barn. The rest – everything around us – came from David, or David’s mother, or my parent’s, or my relatives. We have no room for anything of our own because we are storing everybody else’s lives.

Sometimes I feel that I don’t have room for my own life. I am busy being what other people need or want me to be – and failing (I think, anyway, since they don’t seem happy or they are dead). Before my brother died I was busy trying to be what I thought a boyfriend wanted me to be – and failing (definitely failing miserably). I have a history of people rejecting what I want my own life and self to be. I have a history of people loving me for what I am willing to be for them, although they don’t seem to realize that’s what I’m doing. Sometimes I feel this way and then I feel guilty and weak. What woman doesn’t live her life for someone else? If I’d ever succeeded in having children my life would certainly be about what they needed me to be. And how could anyone ever be a partner without acknowledging and trying to fulfill her partner’s needs? What child wouldn’t want to help her parents in any way she could, even if she couldn’t (or didn’t) help them very well?

And who wouldn’t feel guilty, and anxious… who wouldn’t feel “But it is everything,” when she finally tried to open her mouth to explain that this all felt very wrong… even though she kept that a secret almost all of the time? Guilty because there’s nothing wrong with saying no. Guilty because there’s nothing wrong with saying yes. Guilty because there’s something totally dysfunctional and terribly wrong about saying yes but thinking no for years and years and years… and then, suddenly, saying no.

When I was cleaning on Sunday I felt all of this, and I said that thing to David that I mentioned and he reacted in that way that he did. And then I thought to myself that this time, this time I will not do what I know does not work. I will not sulk and sink in to an easier role as victim, and I will not yell and fly off the handle in to a temporary, injured snit. I will not expect the people I love to suddenly accommodate a frame of mind I have never communicated to them. I’m not sure what I will do, exactly, except that I will take it slowly and, as much as I can, considerately.

In life there must be yeses and nos all over the place. Not all one or the other and not silence. Life is a series of decisions and expecting to live without making them is like expecting to get to New York City without turning corners.

Expecting to change without changing – and without discomfort or pain, and without triumphs nobody but me even knows about – is like expecting to get to New York City without turning corners.

So I’ll have hard days and nights, but along the way I’ll also have days like the one I had today. I slept so grandly, so peacefully and deeply and well last night, and I awakened to bright, lingering sun and warmth. When I got to work I had an email from someone at work I hardly know who asked me to apply for a job that’s a step up from what I’m doing now – and my manager told me I could apply even though I haven’t worked there for an entire year, yet. My stomach cut loose in a way it hasn’t done in nearly two months. My sinuses began to clear. I scheduled a vacation day for tomorrow. And I visited the fabulous personal website I created a year and a half ago and fondly remembered all the technical skills I do still have that are actually in short supply, even though I don’t remember how to get a job using them anymore.

David seems rather withdrawn, perhaps a bit pensive but more like kind of angry in a slightly defensive way. I don’t feel angry with him and I think this will pass, so long as he doesn’t see me revert in to the sulking victim role I have when I’ve given up on trying to be happier in the past. I know my husband, knew him well when we married. It’s myself I’m trying to change here, and not him.

Along the way to whatever I’m changing in to I’ll have times when I’ll feel like I’m suffocating in the dust and debris of my life… and then days like today, when the world is bright and I’m breathing easy. I’m sure of it. Counting on it. Depending on it.

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Yesterday was a very bad, no good, miserable day.

We spent Sunday afternoon cleaning rooms and moving furniture. First there was the “cat room” – so called because it’s where we keep the litter boxes (and junk we don’t have room for elsewhere in the house). Second there’s was David’s office. Everything was covered in dust and cat hair, not to mention the odd hairball, cat litter tracked hither and yon, and secret cat vomit (dried in to crusty cakes and blending in to the background). I emptied the vacuum about a dozen times. We put books in book cases, we put miscellaneous takes and CDs and junk in plastic tubs, we dusted, we cleaned. And then it was time to move the bed.

By the time we got to the bed I was pretty freaked out. The cat room and David’s office are two areas of the house I spend almost no time in. It isn’t that I didn’t know they were dirty, just that it was dirt I hadn’t had to face. Once in the middle of it I was nearly overwhelmed. Of course, there was also the need to move slowly and let David direct, as sorting through his belongings makes him very anxious. We left two bookshelves in David’s office and he wanted to move the bed in front of them, but I nixed that idea. I wanted to move the bookshelves, but he nixed that idea. At a temporary stalemate I finally suggested that we hold off on moving the bed and simply continue cleaning, then I pretty much went and sat in a corner by myself for a little while, repeating softly “at least it’s a start; this can be the beginning of a clean house; I do have the right to prevent this from happening again; I have control over the state of my own home” and similar things, trying to stave off the hopelessness the whole mess made me feel.

David finally convinced me to go ahead and move the bed, and I convinced him to move it to a wall instead of in front of the bookshelves. However, when we stripped off the mattress topper and the (supposedly waterproof) mattress cover we discovered what may have been the single biggest contributor to my nighttime asthma problems so far: my side of the bed is green with mold, through and through. With the bed covers off I could actually smell the mold.

This was not the surprise it should have been. We replaced our last mattress with this one because the same thing happened three years ago. One of the most lamentable of Lamictal side effects, for me, was profuse night sweats. The sweating was so intense that I actually sweat all the way through the mattress – even the board underneath my side of the mattress had mold on it. It probably doesn’t help that both mattress were futons – solid chunks of cotton.

David headed off to get a new (hopefully impermeable) envelope for the mattress and I sat around feeling helpless. Knowing we need to bump a new bed to the top of our priority list. Knowing I don’t even make enough money to support myself anymore – meaning that the money would have to come from a credit card. Suspecting that the blame I was placing squarely on David’s shoulders, where my allergies are concerned, was suddenly pointing right back at me (or, more precisely, to my side of the bed).

Later that night, keyed up and a bit upset (though also, paradoxically, emotionally shut down) I took a Trazedone to help me sleep. When our barking dog woke me up at 2:30 in the morning I took a Seroquel. I felt that hopeless about everything.

I did finally get to sleep, but to say I felt terrible yesterday would be a grave understatement. My sinuses swelled shut shortly after I went to bed and remained in that condition, aside from the occasional bloody nose, for the rest of the day. I hated my job. I hated my customers. I hated my inability to focus on anything like looking for another job. I hated where I’ve ended up in my life.

By last night my sinuses were finally opening up again and the medication was finally wearing off. I went to bed before 1am and didn’t even take a Unisom to help me sleep. And I slept great – better than I have in weeks. My sinuses are still a little swollen but nothing like yesterday. My mind is clear. I feel hopeful about our ability to change the way we live. Hopeful about my ability to live without medications. Hopeful about finding a way to decrease my allergies and asthma to such an extent that they don’t interfere with my ability to live my life.

Nothing profound to end this post with. Just a new day and a day farther away from the weekend. And that’s good enough for me.

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