Thursday, November 26, 2009

Has Effexor Finally Crapped Out on Me, or Am I Getting Crazier?

Four or five years ago, my doctor prescribed me Effexor. At the time, I had a serious social anxiety problem (Social Anxiety Disorder), which was so severe, I was continually being traumatized in social settings and suffering PTSD symptoms: intrusive thoughts and flashbacks (re-living every possible social blunder over and over as if it were happening again, including the bodily responses that go along with the emotional and mental experience). I'd always suffered from social fear, but at it's worst I had returned to school to finish my degree and had a lot of difficulty in class. I was 30 years old, overweight, suffering from chronic, constant pain (fibromyalgia, myofascial pain syndrome), and often seemed to have very 'unusual' approaches to the subject matters. More or less because I had lived several more years than 99% of the students, and read a lot on my own about subjects I was interested in, I already had some knowledge and opinions. I was also a very curious student - I was there to learn, not because going to University is what comes after highschool. So already I felt like a total odd-ball, totally 'uncool', and to my socially anxious mind, an object of embarrassment and probable ridicule in the minds of the other students.

There were a couple professors I had for several different courses, whom I felt comfortable with, and thus often asked questions or made comments without thinking first. Immediately afterwards I would feel completely humiliated as I thought of all the ways the other students could be thinking about me and what I'd said. I would flush furiously and become totally self-conscious, and have trouble focussing on the rest of the lecture. Later I would replay and relive the scene over and over again, becoming just as embarrassed or even more so than when it actually happened. I'd berate myself for sounding like a fool, analyse every little thing I'd said and figure out all the ways that it could have been misinterpreted or negatively judged. Every day I had a class I spoke up in, I added more incidents to my traumatizing 'vault' as I called it. I did extremely well in my courses despite all the energy and time I spent humiliated. I often wonder how much better I would have done if I'd been able to focus my attention entirely on the material rather than on myself.

When I started taking Effexor, I experienced a dramatic change in my social phobia. Eventually, the time I spent wondering what others thought of me and being self-conscious was reduced to almost never. I just stopped, for whatever reason. I was okay letting people think whatever they wanted, and able to concentrate on what I wanted to think about. Rarely did I replay an incidents in my head, so I stopped traumatizing myself. I became able to laugh at myself whenever I goofed up, able to shrug it off and move on immediately. I cannot credit anything but the Effexor with this change. It literally seemed to cure me of my social anxiety.

Unfortunately by this time I had already graduated university, so I wasn't able to reap the benefits of the change scholastically. But it helped in so many other ways in my life. I was able to make phone calls without fretting so much, feel more comfortable on the public bus, and just generally enjoy my life without worrying what other people thought. It has been really amazing.

Over the past few weeks, however, I've started noticing little niggling thoughts, such as doubting if someone likes me or not. I've made a few foolish remarks (on Twitter) recently about feeling ignored or wanting someone's attention. I've started to lose the confidence I have built up over the last six months or so. But it has not been often, so I kind of just shrug it off and think it's just a glitch. Two major things have happened this week, however, to make me wonder if I'm headed for trouble.

Monday night I was supposed to go out for dinner with several old friends, all but one of whom I haven't seen in probably ten years or more. The last time they'd seen me I'd been physically healthy and weighed a normal amount. I found myself feeling so anxious about this reunion that I really did not want to go. I couldn't bear the thought of answering their questions about my illness. I could only imagine their real question would be: "What happened?" I felt so ashamed of my weight and appearance. I didn't want any attention or to talk about myself at all, but I knew the whole point of the reunion was to catch up with each other. Only my friend C knows much about what has gone on with me over the past ten years, and I couldn't imagine discussing it without feeling like a total downer, and wanting to cry. They've all got real lives, and I've turned into the fat sick lady. I had the beginnings of a migraine Monday afternoon, so I cancelled. I was totally relieved to have had an excuse not to go.

But it was strange for me to have so much anxiety about anything. C posted a picture on Facebook after the dinner, and tagged me in it, saying "you were missed". They all looked so happy and nice, and I wondered why I was so afraid of them. They are good people, not judgmental people. They used to be good friends. They weren't coming to look down on me or even feel sorry for me. I felt quite bad about missing it, but on the other hand, my migraine had gotten very bad so it would have been awful from that perspective anyway.

Then today I was supposed to go to Toronto to see my therapist. I usually take the Greyhound, which is about an hour and a half bus ride. I got on the bus, which was packed, and sat down beside a young Asian guy with a laptop. I took out my book and started reading, but I got motion sick almost as soon as the bus started moving. By the time we got to the stop at Sportsworld - about ten minutes away - I was having an anxiety attack and had to get off the bus. I walked to the public transit stop and took the city bus home.

Obviously, I was (and am), extremely upset about this. I have never had to get off the Greyhound before, and it's been years and years since the last time I had to get off an insanely crowded city bus because of anxiety. But I was feeling so clausterphobic, and I knew if I stayed on the bus to Toronto it would be the worst ride of my life. I was sweating like crazy, even after I'd taken my jacket off and sat in my t-shirt (while everyone else managed to be comfortable with their coats on). I couldn't read because of the motion sickness, and the thought of being in my head for an hour and a half during that bus ride was unbearable. I felt like I had no room to even move my elbows.

So what is going on with me? Has the Effexor stopped working? Has my social anxiety been buried by it, but getting stronger? Is this illness having some other weird effect on me?

To add insult to injury, I'm having some extremely serious problems with body temperature control. As I said, I got on the bus and started sweating like crazy, in part because I'd been nervous getting ready to go on my trip. Even after I took my coat off, though, I could feel the sweat dripping off my forehead. Disgusting. Then, after I got off the Greyhound to take the city bus home, I was so cold waiting at the bus stop, I put on another layer, wrapped a pashmina around my neck and another one over my shoulders. When I got on the city bus I had to hurry and take the pashminas off again because I got so hot. I feel like a total freak.

Even at home I'm either hot or cold. Right now I am sitting in my t-shirt and my arms are cold. But as soon as I put a sweater on over-top, I know I'm going to start boiling again. It has been really bad like this for at least the last week. It's like none of the clothes I own have exactly the right level of warmth, they are too thick, but when I take it off my arms get cold. This morning while I had my coffee I actually had to sit with NO shirt on because I was so hot. The temperature in my apartment does not fluctuate - I have the thermostat set permanently at 22. At that very same temperature I can go from so cold I need to put on gloves, to so hot I have to strip off all of my clothes.

This problem can be severly humiliating in public. Once I get hot I start sweating buckets and cannot stop no matter what I do, since there's only so many layers I can take off. People stare at me when I'm the only one in the room drenched with sweat. It's embarrassing to be putting on or taking off a sweater every five minutes. If I go into a store after being outside for a few minutes, I immediately start sweating, and by the time I get back outside, I'm soaked. Back outside where it's cold, I'm freezing because now I'm wet. So this does not help with the social anxiety.

I wanted to write more about how this is making me feel, but I seem to have shut down. Partly from the gravol I took to help with the motion sickness before I knew I was going to get off the bus, and partly because emotional upset makes me really exhausted. I think I took so much time to write out what's been going on, I've become numb to how it makes me feel. All I know is that I almost started crying on the local transit on my way home. And now I can barely keep my eyes open. So I guess I'll go take a nap and try to reconnect with my feelings later.

Monday, November 23, 2009

Undisturbed by Death

So, on friday night, I blogged on my Tumblr (where I put funny pictures and short pieces) about, well, read:

Went for a walk to clear my head and instead got a mind-full.

Let me just begin by saying that physically a walk was probably a bad idea, but sometimes mental health has to take precedence. I needed some fresh air.

I walked down the alley beside by building with my dog, and came upon a lone policeman standing over a man lying unmoving on his back in front of a dumpster in a parking lot. The police officer was putting on rubber gloves.

Normally, I would assume this was someone who had passed out drunk, but I’d never seen the rubber glove thing before. So I don’t know, maybe he was dead. I kept walking - what could I do? When I came back around I saw an ambulance leaving the parking lot followed by a police cruiser - no lights flashing on either. So either the guy was stable, or he was dead. He might be the first dead body I’ve ever seen.

My emotional reaction was to hope that he was just a passed out drunk like the guy I’d found laying sprawled on his stomach in my building’s front foyer at 6 am a few years ago. But if he was dead, how sad. And I shouldn’t tell my mother about this. And how would I find out if he was a ‘body’ rather than a ‘man’. Google Alerts. I’m going to set one up when I’m done writing this. It seems important to know if I walked by a dead body half a block from my building, you know?

Anyway, so instead of clearing my head, I got a brain full of thoughts about mortality and sadness. I don’t know if I will ever lose the image of that policeman getting ready to bend down over this man in a deserted parking lot. It was so quiet and desolate. No fuss, no crowd, no people running here and there, no police cruiser (yet), no yellow tape, no paramedics, no noise. Just two men in a dark parking lot. And I felt for that policeman, what a sad duty this would be, and I wanted to ask if I could help him.

I didn’t feel spooked or chilled or creeped out whatsoever. I don’t know what that means. Maybe it means the man was just asleep. I hope so.

Since then, I've watched my Google Alerts, but didn't expect to hear much until after the weekend was over (i.e. today). Indeed, a local friend of mine on Facebook posted under my Tumblr piece that she'd heard a guy WAS killed downtown friday night. It turns out it was not the man I saw, but a much younger man who was murdered outside of a bar quite a bit further down the street (most recent news story). Hmmm, can I put up a map?

Ok MapQuest won't let me put stars where I want them so I'll do this the hard way. The red star is where I live. Half a block east up Halls Lane is where I saw my man on the ground with the cop. The murder victim was found near Scott Street and Market Lane, much further East. Scott Street is 5 blocks east of my apartment building, and then 2 1/2 blocks north is Market Lane.

So. Obviously still pretty close to my apartment. Waterloo Region is NOT a high crime area, so this is pretty unusual. It's only the fourth homicide this year in the whole region, which also includes the city of Waterloo and surrounding areas.

I still don't know what happened with the man I saw, but I assume he was just passed out and they carted him off to detox. That kind of thing isn't so unusual around here. Downtown Kitchener is full of drunk people on the weekends, and there are a lot of seedy bars, alcoholics, and quite a few homeless people. The man I saw did not look homeless, but sometimes you can't tell. There was no taping off of the scene where I'd seen him, so it wasn't a crime. Either he's fine, or he just died "peacefully". Still, if he was dead, I should've heard about it in the news.

My point in writing this post is to analyse my reaction to this whole thing. As you can see on Friday, I found it a blog-worthy event, but even then I was kind of surprised at my lack of strong emotion. Sadness, yes, but that was already there even before I went for my walk - it was the REASON I took my walk. But the thought that I might have seen a dead man didn't bother me as much as I expected. And in the days since, I've looked at my Google Alerts with apprehension, but only because I expected to finally have a reaction if I found out he WAS dead. But now I don't think that would happen.

I honestly expected to dwell on what happened Friday night. I expected to be confronted with mortality and have some deep thoughts about it. But it just rolled off me like it was something I saw every day. Don't get me wrong, I still have that image I talked about in my head, questions. No emotional crisis, no deep thoughts about life and death and meaning. Why?

Then I started thinking, I spent nearly twenty years of my life thinking about death in a very serious way every single day. Specifically, I thought about myself dead. I wanted to die every day, and most of that time I wanted to do it to myself. Even since the day a few years ago I decided that no matter what, suicide is not an option and so I'd stop thinking about it, I admit I have thought about it. When you live with a chronic illness that gets progressively worse, you learn to live day by day. But sometimes on your worst days, when you are in so much pain and nothing helps, or you are so fatigued you can't even eat, you think that death would be such a relief. Sometimes I think about what would happen if I got even ten percent sicker - I would not be able to care for myself and it seems my only option would be to go live in a home. That thought makes me want to die too. But those are just bad days.

So death has been a constant companion to me for my whole adult life. Death is not startling, or forbidden, or turned away from. I've stared death in the face too many times to be afraid of it.

And then there is my spirituality. I do believe there is more to existence than this flesh and blood life. I do think that my consciousness, or spiritual energy, or soul (whatever you call it) will survive, even if its just going to be dispersed into the energy of the universe. Nothing is lost, energy-wise. I don't know will happen to the person I call "me", but I do believe my experiences will be consolidated or kept somehow. So there's nothing lost but the material, and I have come a long way in my ability to let material things go. I can grieve for them, but I accept their impermanence in my life and in existence. My body is just one of those impermanent things.

It is sad when people die, for the ones who remain. They will grieve their loss - but even loss is impermanent. We are interconnected, we are One with all that is, therefore, everything that is and will be belongs to us and we to it. There is no loss in that sense.

So maybe these things are the reasons I haven't felt disturbed by this event like I expected. Or, maybe I've just watched too many episodes of CSI and Law & Order.

Monday, November 09, 2009

The Great Purge, plus an Update on the Drama

The two topics in the title are somewhat related. "The Drama" is so named because I've been successful in weeding out people who thrive on drama (I call them crisis-addicts) and people who create drama unwittingly because they are liars. I got fooled though, in this one case. So there is only one drama in my life, so it is called THE Drama. I'm speaking, of course, of the cowardly vengefulness of my cousin.

I've been feeling very angry for a few weeks, and very ill. Not being able to get out of bed or off the couch for weeks on end does not mix well with anger. Lately, all kinds of things I normally would laugh off have been irritating me to the point of near-fury. I have been at a loss to know what to do about my anger. The Drama was the last straw, apparently. Yesterday I unleashed my rage on Twitter, in typical perpetualspiral fashion, of course. Sarcasm. Bitterness. More sarcasm. Pointing out people's hypocrisy. I had a run in with a poorly educated (or dumb or both) 'bible-tweeter' and jumped at the opportunity to confront her about her beliefs. She was a real goldmine of hypocrisy let me tell you. About 4 tweets in she told me to go kill myself. Real Christian of her. I am compiling a document of the conversation we had and some comments I got from other people during the episode, as well as some related tweets I posted in between replies. To do this properly will take awhile, so I'll be finishing tomorrow (if all goes well) and posting it here.

Despite my sharp comments, I got NO negative responses from my followers. I got a lot of people telling me they thought it was quite hilarious, or that they totally understand my need to vent and question. I was amazed. I am also happy that I chose the right people to follow & they chose me back. I don't have a huge amount of followers, but over a thousand is a lot of people that could've been ticked off. A few people have unfollowed me but it may not have been for that reason, and I got the same amount of new followers. I'm relieved to find so many people thought it was funny rather than horrifying. As I've gone over the tweets I wrote again, I can see why - they are funny, and not nearly as nasty as I originally felt they were. (Apparently, the degree of guilt I feel bears little relation to my deeds. I should've known that from the fact that I've felt immensely guilty for breathing and taking up space most of my life.)

When I was done "purging" - which included a lot more venting than my tweets to the bible-tweeter, I felt awful. I felt nauseous and spent and exhausted. I felt like "God" was punishing me for what I'd done. And that thought (though of course I don't believe I?) made me feel angry again. Although, the level of anger I was capable of mustering up by that point was pretty pathetic. I was thinking, here I am, having tried so hard my whole life to be perfect, being much better behaved, empathetic and socially concerned than a lot of God's minions, and yet I'm suffering because I challenged one of them? I'm a better Christian than probably half of all Christians, but none of it matters because I don't "believe". God apparently made me the way I am, gave me the life that would make me a skeptic and a cynic, and now punishes me for it? Do I even have to say "it's not fair"? I hold to that poem I wrote the day, at 14 years old, I became truly suicidal: "If there is a God, He must hate me." Why else would someone who's tried so very hard all her life be burdened with suffering that whole same life?

But that makes me wonder, maybe the trying is causing the suffering. Maybe if I was like my hypocritical friend and didn't even try to be a good person, I would be happy and healthy. But not trying to be a good person, to me, is totally immoral. Even if it did relieve my suffering, I don't think I could do it. Is that an irony or an injustice? Pick one, I guess.

As I was getting ready to sleep last night, I took my iPhone to bed as usual, and was tweeting away. All of a sudden I had no internet connection. I tried a few of my other internet apps, and none of them would connect. A few minutes later, N called me, and suggested she call the iPhone to see if the phone part still worked. No dice. My cousin K has disconnected my service. Or put it on hold. Either way amounts to the same deal. And again, all this without a peep from him to explain why he's doing this, or to find out my side of the story.

I decided yesterday that I wasn't going to email him my side like I said I would if I didn't hear from him. Now I don't see the point. I don't want to salvage our "friendship", because it was based on lies and his false persona, which he carefully weaves with anyone in his life because he's ashamed of who he really is. But whatever he's hiding can't be half as bad as the person he's become in creating & maintaining his illusions. So much effort wasted in impression management! I pity him his self-hatred, his self-delusions, because he's made himself entirely alone, nobody really knows the true person behind all the smoke-screens.

I've now been told that he never really wanted to come to our family gatherings, but N persuaded him most of the time. So it's unlikely he'll come to our party this weekend. If he doesn't come to our get-togethers, it means he's just dumped his entire extended family. Way to go. Well, nobody liked you anyway. Though I did try very, very hard to overlook the qualities in you that make the rest of our family uncomfortable. It wasn't worth the effort, but that's the risk I took.

So, anyway, I'm getting a wireless router so I can use most of the features of my iPhone here at home. I rarely go out anyway, and there's more and more free wi-fi in our city. But for now, I'm just bringing the netbook up to bed instead of the iPhone. His 'revenge' really has not hampered me in any way at all. I for one hope he paid a chunk of money to have the plan cancelled, rather than just putting it on hold. One can dream, that an unjustified attack will backfire and cost the attacker more than the victim.

Sunday, November 08, 2009

My Biological Clock is Trying to Tell Me Something: Musings on Motherhood & Children

I was taking a bath earlier today, and I looked down and noticed I was lactating a little. Odd. The chances of me being pregnant I estimate at a billion to one. Yes, I have had sex in the last nine months. But previous to that, I had an IUD implanted, and I bled every day for six months afterwards (sometimes a little, sometimes a lot). Since September I have had a couple of unusual periods, if anything can be unusual after 6 months of bleeding. There are women who have regular periods during pregnancy, yes. There are women who get pregnant even using two kinds of birth control. They are very fertile. I, on the other hand, have always had my doubts about my fertility, since in the past I've had sex without birth control and never had the slightest pregnancy. So, no, I'm not pregnant. If I am, I'll be one of those women you see on talk shows that didn't know they were pregnant until the baby came out.

Well, this got me thinking (sitting in the bathtub thinking is one of the great pastimes of all writers, isn't it?) I've never wanted a child. Sometimes I've never wanted to get married. Sometimes I've never even wanted a partner. But I confess, my biological clock is trying to tell me something. It's dreaming of a baby, and this lactation is its night-emission. Yes, lately I've come to think I would like to raise a child. But having a single mother who can't get out of bed does not make for a great life. I wouldn't be able to carry it around for any length of time after two months, because although I'm strong, I have no endurance and my back pain is too great.

I've often thought that if I became financially and physically able, I could adopt or foster a child. I'm not one of those women who needs to have their 'own' baby - I have some genes that are better not passed on, and I'm not a fan of the whole birth-process, what with the excruciating pain and all. I'd gladly make a home for a child that didn't come from my womb, a child in need of a parent. Most children, I sometimes think, are born out of the needs of the parent(s).

This is a moot question, since I'm sick as hell and just as poor. I don't see these things changing anytime soon, unless a couple miracles happen, like the development of a real treatment for CFS & FM, and someone who cares about me winning the lottery. (I can't afford to play myself).

But, I started thinking about children, and not ready to get out of the bath yet, I continued to think. I've had quite a bit of experience with young children, especially my step-sister's and my best friend's. My brother's kids were graced with three other aunts that are normal, healthy and have cars and money to buy presents. So my services have only been called for once or twice in 8 1/2 years. Also, though it's been denied, my gut tells me they don't trust me. I guess it must be subconscious to them.

I babysat my step-sister's kids for several years, quite frequently, after her second child, her son, was maybe 9 months old. I spent a lot of time with my best friend's kids since they were born too. I noticed I have a very strong empathy with infants and toddlers before they start to talk. I seem to know what they want, need, or are looking for just by watching them. As they start to grow out of the pre-verbal stage, I start losing touch with them. They have more experiences with others, but they don't recognize I haven't been there with them every second of their lives, so there's no pre-explanation for their sentences. This makes it hard to even parse the words, let alone understand what they mean - there's no context at all when I'm faced with a random "Wiggles is Kevin's movie". (At the time, I had not yet been Wiggle-fied and didn't know a "Kevin".)

Once they start school, they have such a wide range of influences and so many activities that I don't know about, they've lost me completely. I have no idea where they are coming from, where they're going to, and how they're getting there, metaphorically speaking. All intuition backfires. I become stupid because I don't know the right words for things. For example, I was reprimanded for calling a coffee mug 'a cup', by a four-year-old: "It's not a cup, it's a MUG!" I could almost hear an unspoken "DUH!!" You see, at that age, things only have one name. If you don't know their version, you must be from another planet. Well, that's how I felt, anyway. Kids are overly-dramatic in their speech. Don't worry I was only hurt for about 2 minutes.

That's as far as I got in my musings. I prefer babies over kids. A lot of people are the opposite, like my cousin who has just had her first child, a daughter. I offered to take G off her hands until she started talking, at which point I would bring her back to mom. ;) Most people like older kids because they can do more things, and ostensibly because they can communicate with you better. Well, with most people. Apparently I am an exception, since I can only understand pre-verbal children (and animals, of course!) I have no idea why this is, since I have always been verbally oriented myself - I've been told I started speaking, all of a sudden, in full sentences, when I was 8 months old - before I could even walk. So this empathic thing with infants makes no sense on that level. But I am intuitive. I am observant. I am psychology-minded, seeing motivations and objectives where other adults see random baby motion. I can see in their eyes what's going on in their heads - learning hand, learning finger, want that! - just by watching. Maybe it's a gift. Shame I'll probably never get to use it on a child of my own.

Saturday, November 07, 2009

Another Rant, & This Time It's Personal (& has nothing to do with illness)

Where to begin? This is a long tale, but I am very much in need of telling it. I am angry as hell, and I need to get it off my chest. If the offending party still reads my blog, he should be forewarned that this ain't gonna be pretty. I'm leaving names out, but anyone who knows me will know who I'm talking about. Let's begin.

Six or seven years ago, my cousin married a lovely, kind, soft-spoken woman from the US. I became close to both of them over the years, and enjoyed my friendships with them immensely. This past year, their marriage problems became too much - they separated and are now getting divorced. N (the woman) was forced to move back home to the States into her parent's home, because her citizenship papers had never been completed. She was jobless, and penniless except for her parents' support. She didn't like having to ask her husband for money despite the fact that her financial situation kept her unbearably trapped. Finally she moved into a rented house and found a part-time job, after months of misery. She's now attending night school as well.

The separation was excruciating for her. She was not the one who wanted to give up. Her husband, on the other hand, felt he needed to 'find himself', and proceeded to go on trips and eat at expensive restaurants, buy new furniture and gadgets, and finally move into a bigger apartment. The money he used to do this was his own, but was available because N had taken over the finances and made a budget that allowed them to build up some savings, which he had never been able to do before. He was living it up, making the most of his work trips to California, and spending most of those trips with a mutual female friend of theirs.

I went to visit my cousin in July, and he told me how happy he was. He told me how much he liked this friend (T), and that he was trying not to fall in love with her. I asked him point blank whether they were having a sexual relationship and he said yes. I knew he did not want his wife to know about this, so I said nothing over the following months. I kept his secret even when N would talk to me on the phone about how much it hurt that he was doing the things with T she'd wanted him to do with her, but at least they were just friends, at least she knew there was nothing sexual to it. I had to clench my teeth and keep his lie, I had to lie by omission to one of my best friends, for months. It hurt me so much to know how miserable, poor and trapped she was living in the States with no friends, no job, nothing. She still does not even have a couch, coffee table or chair other than her computer chair. She cannot even afford the surgery she needs for her thumb, which is becoming ever more painful and crippling every day. She is busier now, and she now knows there is no hope of getting her marriage back, but she's very alone.

Finally, a couple of weeks ago, she told me she knew about her husband and T's sleeping together. I assumed that meant she knew the whole story, so I blurted out that I'd known since July, and that I was very sorry that I couldn't tell her. She was confused - apparently K (my cousin, her husband) had only told her that he'd slept with T the last time he'd seen her, in October. He'd told her a partial truth. She was extremely upset when he'd "confessed", and called me very shortly after to talk to me. So now she knew what I knew. The next time she talked to him she confronted him, saying she knew he'd been with T for a lot longer than he'd said. She told him that someone had told her. Of course, he knew it was me - he doesn't have many close friends, and probably there is nobody besides me that speaks to both of them now. (N has told me that most of the rest of our family ignores her on Facebook now. They probably don't want to get in the middle of things, but I still think it's callous to not say hi once in awhile or comment on her posts.) So K told her that he was going to confront me. She told me what had happened. I said, fine, let him confront me, I did nothing wrong.

I waited, and waited to hear from him so I could explain what had happened. I've heard nothing. Tonight I discovered that both he and his best friend had 'unfriended' me on Facebook. There was no message stating that he was angry with me or wanted an explaination. Just - poof - he's carved me from his life. I think that's cowardly, and ridiculous. After all, our family is celebrating his birthday in a week, so unless he doesn't come, he'll have to see me.

I sent him a short email stating that if he has a problem with me, he should say it to my face, rather than just unfriending me from Facebook. I said "we're family, don't I even get a chance to defend myself?" I doubt I will get a response - obviously it's his way to ignore problems and hope they'll go away. After all, that is exactly what led to his divorce - he refused to get marriage counselling, refused to try to work things out with N. If I don't hear from him by tomorrow, he's getting another email with my side of things whether he wants it or not. It is absolutely unfair for him to condemn me (and throw away our friendship) without finding out my side of the story.

Furthermore, he put me in a position to have to lie to N for months, and now he's blaming me when he gets caught in that lie? He knows how much I care for N, and yet he didn't blink once about how I had to lie to her for him. Anyone who knows me knows how much I LOATHE lies. I do not ever lie, especially about important things. And yet, family loyalty persuaded me that I should let him come to her with the truth in his own time. Family loyalty which apparently means NOTHING to the one I lied for. He can just toss me away like a used gadget he has no use for anymore. Were these last months of friendship only his way trying to buy my silence? All the time we spend together talking and laughing and sharing - that meant nothing to him. All I've been to him is someone to share his secret happiness with, someone to then KEEP that secret despite how painful it was for me to do so. Once the secret is out, he has no more use for me. Well, I guess I now know how fickle his relationships are. He throws away his wife, the best thing that ever happened to him, just because he refuses to WORK on the relationship, and now he throws away the only family member that voluntarily sought to be come closer to him.

Have a good life of tossing people away when they become inconvenient, K. Have a good life full of your gadgets and $400 dollar steaks and buying your friendships. Have a good life hiding in your work and behind your computer, forever convincing yourself how smart you are, and that being smart is the only thing that matters. Have a good life never admitting your mistakes. I learned a long time ago that being right doesn't hold a candle to being loved. I pray you'll find that out yourself before it's too late.

Thursday, November 05, 2009

The Next Time You Feel Compelled to Tell Me I Should Try, Buy, or Do Something, Read This First: A Rant

I let a lot of ignorant behaviours wash over me, because I like to pick my battles. But there are a few things that really get to me, and people's well-intentioned, persistent or repeated suggestions about what I should be doing with my time and money is one of them. Worse still is when they are suggestions coming from someone who is or has been ill with a similar illness as mine. "It worked for me" is not legitimate evidence supporting a particular treatment, especially for such individualized, one-size-fits-one illnesses as ME/CFS and fibromyalgia.

Please note: this is NOT directed at any particular individual(s). I have had hundreds of well-meaning suggestions over the years, and they've snowballed to a point where I'm just fed up with arguing about them. From now on when anyone persists in their demand that I should try, buy, or do something, I will be referring them to this post. In addition, I am well aware that this post is probably going to make me sound like a royal bitch, but if you have any compassion in you, you might be able to understand why I'm writing it.

Why does this bother me so much? For one thing, it forces me to dredge up my reasons for not being able to comply, reasons that remind me time and again how deprived and helpless I am. No I am not exaggerating, being melodramatic, or throwing a pity party for myself. I am, in fact, deprived and helpless compared to most people, which I will explain below. To the well meaning suggesters, my reasons for 'non-compliance' sound like close-minded excuses, and apparently invite them to keep arguing. So, once and for all, I'm going to tell you why my reasons are not excuses, and why I can't try every supplement ever created or go to an acupuncturist or read a book that's not at my library. It all boils down to one thing: resources.

I am poor. When I say I am poor, I don't mean that I live in a townhouse instead of a bungalow, or that I drive a battered old car instead of a new SUV, or that I can only afford to eat at a restaurant once a week. When I say I'm poor, I mean I've needed new underwear for six months and I haven't been able to buy them. I mean that if I do go out to dinner once a month, I will spend the last week of that month with less than a dollar in my wallet. I mean that after I pay my rent, bills and groceries, supplements, household necessities like soap and toilet paper, pet food, transportation to my doctor's in Toronto, and my therapist fees, I have about $100 dollars left for the rest of the month. When you tell me I should try a bunch of herbs for my symptoms, I ask you, what do I sacrifice? Do I give up my other supplements and deal with you telling me I should be taking those ones? Do I starve my pets or myself? I don't really need a home phone, right? I can do with out soap. After all, I never leave the house, so why do I need to be clean? And since I'm unclean, why do I need a clean apartment?

I live in subsidized housing, a bachelor apartment that is one square room with a bathroom. I have no balconey. I share this box with a dog and a cat, who give me the only physical contact I ever get, save for a half-hug with my mom once a month, and a real hug or two when I see my best friend every other weekend or so. These animals are the closest thing I have to a family.

It may be hard for you to believe that the Ontario government would force its disabled to live below the poverty line, paying only for old generic drugs that only mask a little pain, and no other treatment of any kind (unless you happen to have diabetes). But whether you want to believe it or not, that is the truth. There are thousands of us - ask any one of us.

When most people say they can't afford something, what they really mean is "I'd rather have..." ...that new pair of shoes, a manicure every month, the second car, the extra 9 holes, the acting lessons, etc. What I'm saying is that I'd rather have food, shelter, toilet paper and my pets than an energy healer or white willow bark tincture. Don't tell me how inexpensive grape seed extract is or that a TENS machine is SO worth the cost. I don't even have five dollars to spare. I am saving my literal pennies in a coin bank so that by the time I'm eighty I can buy a mobility scooter and leave the house once in awhile. As I saw recently on one of the dozens of "Top Things Not to Say to a Chronically Ill Person" lists I've read since Invisible Illness Week, don't suggest it to me unless you are willing to pay for it. Because I just can't afford it! This applies to health food and allergy-free items as well. I do most of my shopping in the produce section already, but I can't afford organic, nor can I afford to eat the recommended daily amount of vegetables.

I have Chronic Fatigue Syndrome and Fibromyalgia. That makes me a 'spoonie'. If you don't know what a spoonie is, read this. In short form, spoons are a metaphor for units of energy. People with chronic illnesses that cause weakness and fatigue only get so many spoons a day, and this number is but a fraction of that of a healthy person. Lately I've been getting about two spoons a day. What can I do with a spoon? Well, I can prepare a healthy meal, OR I can sit up at my desktop computer for 45 minutes OR I can run a small errand like going to the corner store and mailing a letter OR I can take my dog for a 20 minute walk OR I can have an hour long conversation on the phone. So, if I only have two spoons, I can only do two of these things. So please stop telling me that I should go for a long walk to clear my head, or take some yoga classes, or try this self-massage technique, or go to a support group, or go anywhere. My priorities are trying to keep myself clean, well-fed, and not wanting to scream, cry or die. If I could do other things, I WOULD.

The weirder part is, I'm very touchy about any suggestions. If you persist in suggesting something to me, not only does it remind me of how sick and poor and helpless I am, it makes me feel like you think I'm ridiculous for not doing it already. It makes me feel pressured. It even drives me nuts when people tell me more than once what television shows I should watch, when I've already said I would like to do so if I had the opportunity. I don't have even one television channel. The library doesn't have it for me to borrow. Obviously I cannot afford to buy DVDs. I can't even afford to sit up in a chair and watch television on my computer. So again, if you want me to watch something, provide it to me and I would be more than happy to comply. But acquiring such things are not on the top of my priority list. (Note: to my friends who may have done this - I am not angry with you! I know this is my odd issue, and it is an overreaction. Please understand why? It hurts like hell to be reminded of all the things I am forced to live without.)

Am I saying I never want to hear a suggestion from someone trying to help me ever again (unless they are offering to pay or do for me)? No. But it would be excellent if you would acknowledge my impoverished situation when you do it. Try saying, "I know you can't afford this right now, but in the future, you might want to look into..." If you want me to read or watch something, one mention is just fine. I have a list of television shows I'd like to see and books I'd like to read, and I'll add your suggestion to my lists. When I tell you why I can't do something right now, like read 10 dry blog posts or articles or watch a million dry informative videos on youtube because it takes a lot out of me to do those things, don't argue with me. I may bookmark it, I may not. But I have my own priorities, and I don't need help with arranging them, thankyouverymuch.

I would like to repeat that no one should take this post personally. I have written it so that in the future I won't have to waste spoons trying to impress on people that "I can't afford it" is a literal term when it comes from me. I am not angry with anyone for their past suggestions, and I am fully cognizant that in general everybody is trying to help. But you may be able to understand that reminding me of my suffering and inability to escape from it does not, in fact, help me. To be clear, I like information. I don't like people trying to persuade me, all the while not hearing me when I try to explain why I can't be persuaded.

Now, if you still think I'm a bitch, I am okay with that. Nobody's forcing you to follow me on Twitter or read my blog. My real friends will always support me, because they understand me. Amen.


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.