"Maxalt & Me"

Not to be confused with the current bestseller, "Marley & Me", about a guy and his dog. I wish I could turn my life story into a bestseller, but think I may need a more furry, cute, and rambunctious topic than chronic tension-type headache.

I tried Maxalt for the first time last night. A few months ago, my neurologist gave me a sample to try. You see, we don't know if there is a true 'migraine' component to my headache. I don't have the typical clinical manifestations of migraine, except for the pain. I don't have the litany of other troubles like photophobia, nausea, and excruciating pain you're all familiar with.

I have chronic tension-type headaches instead, and while they are severe at times, they don't appear to be migraine. I have occasional one-sidedness, and knife-in-the-forehead pain but it is generally not bad enough to need acute intervention, abortive meds, or whatever you call them. A couple of times a week, my pain gets *severe*, usually in the evenings, although I routinely have very bad headaches upon waking (which usually relent a bit after a couple of hours awake).

So how would I know if I had Migraine? Since I don't fit the clinical checklist, I'm left wondering if my pain is as bad as others'. At times, it seems like the pain is as bad as I can tolerate, but I know it could be worse (unbearable, excruciating). Since I don't use those words, I'm left with "very bad" and "severe" to describe headache as bad as it gets for me.

It's no picnic, though, since I have headaches every day, all the time, 24/7/365. Looking over my pain journal, I haven't had a single headache-free day since Christmas, and even then, it wasn't even a whole day. That day, I recorded two zero's (no pain) on my chart and listed a 3 that evening. So I didn't have a whole day. And I haven't had a single "zero" any time since. I literally have a headache ALL THE TIME, without exception, at some level or another.

Anyway, to get back on track, David decided I should try Maxalt (RPD 10mg) last night. After work, I was having pain "as bad as it gets" for me, and was in bed when David arrived. I'd been timid to try Maxalt after reading the list of side effects. Basically, it's a serious vasoconstrictor, so you can feel like you're having a heart attack or stroke, or it can cause one. And I wondered if it could make me have an actual migraine, as rebound. I was worried. But since my neurologist humored me last time with "we haven't had anyone die yet" when I listed my concerns, I relented...

So David brought me the drugs, and at 7pm, I let the little white tablet dissolve on my tongue and waited for (i) my chest to tighten and me to have a heart attack and (ii) my headache to magically disappear.

Nothing happened.

I felt sleepy after a while but the headache didn't miraculously disappear. What did happen was weird: about an hour after taking it, I noticed that the pressure in my head had lessened. My headache often feels like my head is about to explode from internal pressure, like my brain is too big for my skull and is pushing-pushing-pushing out. I often wish I could open a valve to let the pressure out. So the pressure did seem to stop, or relent. the edge was gone, but I still had a headache. It was more like my head was sore and achey but the pressure was gone.

I know... it's hard to describe pain. It was like the acute over-pressure pain was gone but a residual achey pain was still there. If I could make a bad analogy, it might be like hitting your head on a cupboard door or skinning your knee. It hurts like heck the second you do it, but hours later, there is still a residual pain/soreness when you move around. It was like that. The immediate "ow!" was gone but the spot still hurt.

Can I say Maxalt worked for me? Maybe a 25-50% reduction in the pain, but no miracle. More like a change in the pain. It definitely took the edge off. But it didn't stop the headache.

I imagine the results are more dramatic for someone hanging over the toilet or unable to open their eyes to the light.

Overnight, I had a restless sleep, likely because I didn't take my Elavil. I just wanted to see if Maxalt might keep working overnight and maybe I would wake up cured!

I woke up with a brutal headache.

But after getting going, I've felt okay most of the day. I felt kind of rested, but the pressure is returning and my headache is about a 6 right now. I have an ice pick over my right eye (a relatively new development that is getting more routine). Right back to normal. Work was stressful today, so I didn't exactly have a relaxing post-Maxalt day.

For now, I think I'll stick with my Elavil and muscle relaxants. My pharmacist mentioned a new muscle relaxant to try...Baclofen. I'll report on it in the future, once I see my GP. I'm curious about the muscle relaxant route because I have a huge muscular component, and have noticed that Robax Platinum (methocarbamol, a muscle relaxant + Ibuprofen) is the only drug that occasionally (without rhyme or reason) brings any headache relief. I'm thinking I might start a focussed regimen to explore the world of muscle relaxants again and see if I can find relief.

And leave the heavy stuff to you official migraineurs. : )

A Good Weekend

All in all, it was a good weekend. Of course, mine are ranked by the incidence of headache, not by how much fun I had. Fun. What's that?

On Friday night, David and I went to bed before 11pm, which was absolutely shocking to my system, but necessary as I'd had a brutal week of high-pain level headaches. I slept like a baby and got up at 8am for a dental appointment at 10. What was I thinking when I scheduled that?

But unlike other Saturdays where I sleep in 'til 11 or noon, I actually got something accomplished on Saturday. The day seemed sooooooo long, infinite. Which I guess it is if you actually get showered and leave the house by 9:30am.

I spent Saturday shopping! Almost entirely without a headache (okay, a mild one). Now, unlike most women, I hate shopping. Well, I love shopping, but I hate clothes-shopping for things I need. I enjoy shopping for things I don't need. What I need are some summer dress clothes for work, and I face the usual conundrum of finding intelligent summer clothes that are cool and comfortable for walking to and from the office (40min each way) but don't make me look like Working Girl (suit and running shoes).

I bought a very cool pair of beige and white leather running shoes and a blue cotton skirt. I tried on 400 pairs of pants and found none. Typical. I have a problem with pants. I am not a big woman, but I am shaped like an hourglass, not the ubiquitous cylinder. All pants are made for cylinder people with thin legs, not for hourglass people. So I have a waist that is two sizes smaller than my hips, and I'm tired of taking all my cylidrical pants to a tailor to have the waist taken in 6 inches.

Banana Republic recently introduced a "contour-fit, designed to flatter curves", which I say is about damned well time. Unfortunately, their pants are at least $150 and there is like one style in the whole store with that cut. So I liked one pair, but instead of being a normal beige or khaki, they were this puke brown color which kind of looked like what Biscuit (my orange tabby) barfs up when he expels a wet hairball covered in Iams Hairball Care cat food.

So I left them at the store.

But in my despair, I ended up at Pottery Barn, where I bought David and I an old-fashioned mirror for our future Amazing Home. The mirror is dark wood, about 3 feet long horizontally and about 1.5ft vertically and has a beautifully beveled mirror and brass hooks along the bottom. It is classic and New Englandy.

The rest of the weekend went by too quickly. Last night, we watched "Chronicles of Narnia", which was such a beautiful movie. Today we went to Costco, read the paper cover-to-cover, and had some wonderful meals, prepared by the lovely David.

The weekend was relatively pain-free. Tonight I'm seizing up, probably from sitting in front of the evil computer for so long. My headache is moderate. But thanks to a couple of good sleeps, I am feeling sane for a change.

Tomorrow I have a 5 hour meeting, noon to 5pm. Good Lord. And, the meeting chair has ordered pizza for lunch. Just what I need....a fattening, high glycemic lunch which will put me to sleep while I listen to 5 hours of droning boredom. All I am thinking is I need to get a comfortable chair near the back of the room so I don't have to crane my neck to see the overhead screen for 5h. That is a big headache trigger....craning my wee head. And talking to engineers.

Have a wonderful week! We are going to the Maritimes for vacation in less than 5 weeks. Can't wait to see my darling Mom and show David the place I call home.

Gabapentin?

My neurologist mentioned this drug to me during my last visit. This will be the next preventative drug for my chronic TTH that we'll try if amitriptyline doesn't work. I restarted amitriptyline a while ago and I'm now at 40mg. It isn't working. My headaches are as bad or worse than ever. In the past I've taken up to 75mg per day to no avail.

So I may let him prescribe this gabapentin (Neurontin) but I've heard nothing about it, other than it's an epilepsy drug. I will do some self-study, but was wondering if anyone has tried it as a preventative?

Thanks!

Trigger: Lack of Sleep

My biggest headache trigger is sleep, or rather lack thereof.

Most nights, I average 7 to 7.5h of sleep. Clearly this isn't enough for my body, as evidenced by the fact that I have chronic headaches. If I consistently get less than 8h sleep a few nights in a row, I suffer brutal headaches. Today is one example. Right now, my headache is pretty much as bad as it gets. I can function, but not well. I am intellectually and emotionally spent after a hard day trying to cope at work. My head and back and neck are aching like there's no tomorrow. I hurt all over.

If I can manage to get 8 to 9 hours of sleep a night for the next few nights, I can break the cycle and get a few days of modest relief. So unfortunately, I'm not one of those people, like Oprah, who can function on 4 or 5 hours of sleep.

Being a night owl, physiologically, this is difficult. My body's desire is to be up late at night. I often feel like I "wake up" in the evenings, and find myself most mentally alert. Around 9pm, I am often the most "alert" and ready to take on projects and be in planning & doing mode. As a result, it's hard to go to bed when I don't "feel" tired. I may even be exhausted from a day of headaches, but my mind is most active.

When I force myself to bed at 10pm on those nights, I often lie there thinking, scheming, and planning, with my active mind, whether I like it or not. It's hard to quiet my brain.

My neurologist was interested when I highlighted lack of sleep as my major trigger. Or at least I think it's a major trigger. I can't get enough consistent sleep to prove it. So he challenged me: if it's your major problem, why not get 8-9h sleep per night for the next 30 days? Sounds simple enough, but it's easier said than done.

Considering that my alarm goes off at 6:45 on a work day, that means I need to be sound asleep by 10:30pm. Which means "lights out" by about 9:45 or 10pm since I typically lie awake a good 30-45 min. Now, that means I need to start getting ready for bed around 9:30pm, because being a girl, these things take time (pills, contact lenses, face washing, teeth brushing, face cream applying, clothes for next day?) This, it seems, is impossible.

I try, but I don't try hard enough. I routinely work late and don't get home until about 6:30, which gives me very little "evening" time: time to visit with David, time to exercise, blog, cook a healthy (trigger-free dinner), have a social life, do chores, do projects, etc. So it's hard to do the "in bed by 10pm" thing.

Thus, I've concluded, I'm my own worst enemy. Wanting to keeping my life balanced, and keeping things done in my life (chores, projects, taxes, investments, exercise) means I stay up too late every night.

Somehow, I need to change the priority. I need to go to bed, simply, for a week or so in a row and see how my headaches behave. Maybe an hour long blog wasn't a good idea, either. I need some brevity. : )

I'm admitting I need to change. I need to force myself against instinct. I need to re-learn how to be an early-to-bed person. But it's tough to go against one's physiological makeup.

In this way, I feel partly responsible for my own headaches. This makes me feel worse.

And I'm pissed that I need so much sleep to control my headaches. It really isn't realistic for a productive, active adult. But I need to keep trying. And I need to face that this is just my reality. And like anything else, nothing is as easy as it sounds.

Consider dieting: if it were so bloody easy to eat small quantities and exercise, we'd all be in textbook shape. Now since 60% of Americans, or something like that, are overweight, that's a pretty strong indicator that saying and doing are very different things. I have 200 million people backing me up. Big people.

I know, I know. I am responsible for my own fate, my own health. So as much as it goes against my basic character, and makes me feel "not me", I need to start going to bed earlier.

I'll let you know how it goes. But I'm curious: if you're a fellow headache sufferer...what's your experience with headache and sleep? How much do you need? How much do you get? Is this a potent trigger for you? Comments would be appreciated. : )

Serendipity

This evening, I went for an long walk through Inglewood, along the river. I walked from the Inglewood bridge, down to the weir and back.

This is one of my favorite urban walks in Calgary; it's a little-used portion of the river trail system, so one often has the whole trail to oneself. The only disturbance is the odd dog walker or cyclist returning home from work.

The Inglewood Bird Sanctuary is less than a kilometer down the river, so there's a fine variety of birds. Leaves rustle and birdsong fills the air.

As I walked, my mind wandered, and considered the lay of the land: it's so low to the river in this area, barely a few feet above the water. The City has planted benches along the way and I always complain to David that they were installed by 6 ft tall men since my feet don't touch the ground from any of them (and I'm 5'5"). The benches are ugly, modern and uncomfortable. You long for one of those uptight-looking but curvy wrought-iron-armed Victorian ones.

Along the way, there are small meadows and off-leash areas for dogs, and you see the backs and fronts of all sorts of new and old houses. There's an eclectic disheveledness to Inglewood, a part of town only recently gentrified, and barely so. The trails here have a wild feel. There are crazy old Victorian houses with driftwood-decor gardens, and brand new, tall, modern taupe in-fills. One guy has a hubcap collection on the backside of his garage, while his yuppie neighbor has the word "Soleil" posted on the walls of his.

As I walked, I thought about gardens and nature. I marvelled at how Calgary seems like such a barren, desert town, but has these superb, eclectic green spaces, and a gorgeous river running through it. I wish the City would devote more resources to creating these idyllic places, where you can escape the traffic and the racket of living. There's something soothing about a park, a garden, an escape-space within quick reach.

David and I have also discovered a wonderful park, which we often get to occupy with little or no (living) company: The Union Cemetery. This cemetery, in the center of town, is a vast space of rolling hills, large deciduous trees, flowering shrubs, and ancient-looking monuments. It seems to be the only place in town with any history, and it appeals because it's classical and weathered and grey and calm and has beautiful stonework. Something about it resonates with us. It seems to hearken to a bygone-era when people took their time doing things, and cared about creating beauty. Even the gravestones bear poignant inscriptions which suggest a certain integrity no one seems to care about any more. There is something noble going on here. Or maybe it's just the solemnity of death done beautifully.

So I walked and thought about nature, about parks, about what we do to carve the land into shapes that please us. Coming into the house, CBC radio was on, and I heard the name "Olmstead".

It was an interview on "Ideas" about the landscape architecture of Frederick Law Olmstead (the father of American landscape architecture, if I recall correctly). I saw an exhibit of stunning photographs of his work in Montreal many years ago, and never forgot his name. He mastered both the formal garden and the rambling, wandering wild kind. He americanized the formal European garden, creating a more liveable, accessible one. He designed Mount Royal Park in Montreal, which I visited often living there, as well as Central Park, which I've visited twice. He also devoted years to Prospect Park in Brooklyn, which I've heard about, but never seen. His work is wonderful, if you get a chance to look it up.

I still have a postcard from the exhibit. It sits, framed, on my desk at work. It's a softly-lit photo of a path, a mossy green path in autumn, shrouded in a pale diffuse white fog. The path just disappears off into the fog. It's a path your eye and soul want to follow. I often look at the photo and wonder what is beyond its dreamy borders.

That's my blog. Just some thoughts on paths I'd like to take, some paths that thought takes.

A duel: Chronic Tension Vs. Migraine

I have chronic tension-type headaches.

That isn't my naming choice, but the clinical descriptor greater neurological minds than mine have given my plight.

And no, they aren't migraines.

People with tension-type headaches don't get a lot of sympathy. Not even when their headaches are chronic: meaning Every Single Day. You see, I don't suffer, clinically at least, from the glamourous varietal the world knows as Migraine.

Tell someone you have tension-type headaches and they think you have a stress (tension) problem. (It actually refers to muscle "tension" but that's too much information).

No one is familiar with "tension-type" headache. But I can't feel too bad; I imagine cluster headache sufferers have it worse. Cluster whuh?

You try to decribe tension-type headache by saying "well, when you (generic non-headache suffering person) get a headache, it's probably a tension headache." So, hey, it doesn't sound so bad!

But this brief description underestimates what I and many others experience. You see, on my pain scale, I can experience headache ranging from about a 2 to an 8 (out of 10) over the course of a day, with an 8 being disabling pain that makes me need to go to bed (aka about the same as a bad migraine), and a 2 being perfectly bearable but clear-and-present pain. My levels fluctuate during the day. Some days are worse than others. But a "run-of-the-mill" headache , like in my example, would score about a 2 or a 3 on my scale. Meaning if you (regular joe) have a "headache", I probably have worse than that most of the time.

What difference does it make if I prove to you how much pain I have? Does it help if I compare it? We all know it's impossible to describe our pain. But giving examples helps because it lets me translate my daily experience into something a stranger can fathom. Which will help me convey how I experience the world. But describing my headaches as what the average guy gets doesn't tell half the story. And I have given up seeking comfort from strangers. Most people simply don't care.

My headaches can be mild, or they can be as severe as "migraine". And I sometimes say that. But, ethically, I never say "I have migraines" because (a) clinically I don't and (b) I don't want to jinx myself.

But if I say "they're not migraines" people automatically assume I'm not disabled by them, that they aren't "that bad", etc. It would be so much easier if I could just say "I have migraines", because people can relate to (or are aware of) the level of pain and disability associated with this condition. My headaches debilitate me, disable me, and kick my joie de vivre out of the house. They make it very hard to work, to function normally, and to participate in a fullsome life. They disrupt my thinking, reduce my intellect and destroy my interest in much of anything. My bloody head hurts, all the frigging time. Is that enough?

But saying "I have migraines" is usually met with "oh, you poor dear" and some much-needed sympathy. Ahh, wouldst be easier to suffer the migraine, methinks.

Now to change my tune:

Migraine sufferers don't have the market cornered on compassion either. They usually get trumped by someone's cousin/sister/mother/friend. Say in mixed company "I have migraines" and you'll be met by a chorus of "oh, my sister has migraines" or "my daughter has migraines", thereby dismissing your own sorry story. Many times in having a conversation about my headaches, I've just gotten started when I hear a 20-minute litany of stories about so-and-so's migraine problem. They soon forget what I was saying.

Maybe I'm just looking for praise or compassion or something. An acknowledgement, maybe, of the crap I put up with every day. I look normal, and since I don't wear a scowl on my face every day, I guess I seem healthy-enough to an untrained bystander. So, no one I work with, for example, even bothers to ask about my headaches. They could care less. But when I think about it, do I care about their high blood pressure or diabetes? Yes, but not enough to ask. Maybe I think it isn't my business. But likely, I just don't think of it.

It makes me realize: we're most interested in our own stories.

My boyfriend is the only one who asks how I am. Every day. And I so appreciate the acknowledgement he gives me. And my Mom asks too, but she's far away and it slips her mind sometimes, because she doesn't see the effects. But sometimes you want someone else to care, someone to take an interest. Someone to ask questions. No one does. Except for other headache people who just want to pump you for information (just kidding my lovelies).

So I'm tired of Migraine People getting all the sympathy. Ok, not really, but it just seems easier to have a label people can understand. P.S. This is an invitation for migraineurs to write and tell me "no, it isn't any easier, princess, so stuff it!"

A Migraine Example: on Sunday, David and I went for Easter dinner at his brother's house. His brother and his brother's lovely wife (LW) hosted us and David's Mom for a wonderful dinner. I experience headaches Every Single Day and yet no one asks me, ever, about my headaches. Not their fault, right? No one thinks of it (not even my own family). But arriving at the door, we were informed that "LW is getting a migraine and is upstairs resting". Now I don't want to downplay LW's headache. I bet it was a bitch. But LW was met with a lot of sympathy and clucking from all parties when she joined the party later on. She was encouraged to "go and rest" and fussed over, and so on. During the meal, my own headache was probably about a 7. And had been all day. I'd taken two muscle relaxants before going over there, and about two dozen Ibuprofen. I wanted to say (in a teeny voice) "I have a headache too"!

But it didn't matter. I was upstaged by A Migraine. Her first since August. Poor Thing.

Now I don't mean to be callous. I wouldn't trade my headaches in for anyone's migraines. But it's just an example of how chronic daily headache takes a back seat to people with Emergency Headaches who rarely have them and Make a Big Production. And we take a back seat to migraine too. But you can't really fault people. As humans, we are most interested in our own problems, which you can tell from any conversation where we try to out-do each other and not really listen.

And I'd probably be bitching non-stop if my wrist started aching every day, but plenty of people live in silence with arthritis. Or asthma, or MS, or back pain, or rheumatism, or sciatica, or....a zillion other ailments that people don't get praised for tolerating like the noble souls that they are.

But the truth is, not getting acknowledged once in a while can hurt. It's a tiring journey, bearing the load every day, and sometimes a little credit would be nice. A kind inquiry as to our health would be nice. Then we could be Trooper-of-the -Year and say "I'm doing fine" instead of whining, like I am now, pleading for attention.

But the more I write, the more I realize how many people there are in the world who suffer in silence. Or are caregivers to those who do. You're all saints in my book.

So that's my vent. I hope the Migraine People don't hate me. This blog was meant to be funny, with a little kernal of the truth inside the hard shell. I wouldn't trade my headaches in for anything (except maybe relief), because at least I know my demon. But sometimes, it could be easier. Or maybe just different. Or maybe this is as good as it gets and I should be thankful for being so well that no one notices.

Missing Day

Today went missing.

I woke up with a terrible headache. Despite 3 days off over the Easter weekend, I was in no condition to get up for work. My head had ached intermittently all weekend, and my back and head ached especially badly all day Sunday. After going to bed a little late, and taking a couple of Robax for the pain, I awoke to a brutal headache accompanied by a terribly sore neck and upper back. Not wanting to call in sick again, I phoned a colleague and told him I was taking a "flex" day to get some stuff done around the house.

I went back to bed and slept until 3pm.

Quite kindly, my company provides us with 12 "flex" days a year. They're days-off, like vacation days, but can't be carried forward like vacation. So, with my 3 weeks of vacation, I actually have a total of 5 weeks + 2 days vacation every year. How very European! Anyway, these flex days are intended to be used for doctor's appointments and the like, and are a great benefit for folks with busy lives (i.e. everyone), kids, etc. to attend to. They're part of our company's civilized "balanced life" approach to people management.

Somehow I just couldn't call in "sick" after a long weekend. But oddly, when I do call in sick, it is typically on Mondays. Why?

I'm accustomed to waking up with bad headaches. Almost every day, I drag myself out of bed, despite the sedation of Elavil, and the debilitating pain in my head and neck. The analogy I use for people is that of waking up to a hangover every day of your life. A hangover you didn't earn.

But somehow on Mondays, it's harder. On Mondays, the reality of your life with chronic pain hits you like a kick in the stomach. During a weekend off, you're able to pace yourself and adjust your life to the pain, for example, by slowing down, lying down when you need to, or just not doing certain things. Weekends give you the freedom to live your life around the pain, let it dictate what you'll do and when you'll do it. Weekends are flexible.

But on Monday, you're forced to push your pain aside and face the official demands of a Working Life. You wake up to 5 straight days of forcing yourself to function with pain, whether you're able to or not. On Monday, your painful reality comes screeching around the corner and it's tough, physically and emotionally, to face. There's no flexibility to the work week; your work day start at 7am and ends at 6pm, if you're lucky, whether you like it or not. So there's a psychological dimension to Mondays that make them worse. On Monday, you face the loss of control and you need to go out into the world, hurting or not, ready or not, able or not. You have to swim with the other fish, even though your fins are falling off.

So today went missing. I called a colleague, called David, and went back to bed. I slept until 3pm, waking intermittently to intense feelings of guilt. But I just couldn't face the day, nor the pain in my head. I wanted it to go away. I just wanted to go back to sleep and not face it. I wonder, on days like this, if I'm depressed. It sure sounds like it. I think the first thing they ask depressed people is "do you want to sleep all the time?" But I don't feel particularly depressed. At times, I do feel burdened by all of this, but I don't sit around feeling sorry for myself. I do, however, feel overwhelmed a lot. I can't seem to manage a normal life. I'm always behind on things. My "To Do" lists never get done. It is depressing, if not clinically, to never feel accomplishment.

So, on days like this, I escape into sleep. I sleep to escape the physical pain, mostly, and it is so welcome. It's like telling the pain, "ha ha, you can't reach me here." And I also sleep to escape the pressures of a life I can't keep up with. That sounds like depression to me, but the fact is, I feel better once I get it out of my system. It will probably be a month or two before I need to sleep all day again. Before the spiritual and physical exhaustion catch up with me again.

After sleeping all day, you awaken mainly because your body is getting sore from lying in bed. And because you physically can't sleep any more, and your guilt and other emotions keep preventing you from disappearing altogether. I woke up today simply because my brain was so busy going over lists of things to do that I couldn't silence it any longer.

Do I plan to tell my doctor this? No. It's my coping mechanism. Is it healthy? Probably not if I had kids or a family I were neglecting, but luckily, no one notices my absence. David worries, but he understands my need for a missing day. He understands the soul-tiredness, and the fact that I just can't face reality. My colleagues likely don't notice my absence because we work alone a lot of the time, and I rarely miss meetings and always have my work and action-items done.

But I miss the days. I wish I didn't need to take these time-outs. I wish I didn't need to be dead for a day. I wish I didn't have guilt after them. I wish I didn't have to wonder whether I'm depressed, when generally I feel emotionally stable. I wish I didn't have to call in sick, which involves other people and makes them wonder about you. But it's how I cope. I escape into sleep for 16 or 18 hours and it makes my life in pain bearable for another month or two. It somehow recharges me, resets me, restores my defaults, I guess.

And I try to tell myself it's okay. I am not a machine. No one can live with 24/7 pain and expect to be normal and keep up the appearance of normal. This isn't normal, what I feel inside my head. And if anyone lived with what I live with every day, they'd need to sleep 20 hours straight too. But I wonder, still, if it's okay. It seems wrong somehow, to want to sleep and not wake up. But I think it's my body's way of getting some peace, some respite, if only for a few extra hours.

Ahhh....spring!

So I managed to drag my sorry self back to the YMCA again today. That makes 2 days within a week! My body hasn't seen this much exercise in months.

Despite the dread, it actually felt physically good to be back at the gym, moving my limbs, stretching un-stretched parts, doing some cardio, and a few weights. If only I didn't have to be surrounded by wretched tanned, fit, cheery people. Who the heck has a tan in April in Canada? The fake 'n' bake crowd I guess.

Anyway, back to me: I've lost so much muscle and wasn't surprised to find I needed to drop all my weights back 10 or 20 lbs. I also wasn't impressed with how sickly I looked in the mirror, filling out my gym clothes like there was no tomorrow. But luckily the Y doesn't have mirrors everywhere. In fact, you have to intentionally position yourself in front of one if you want to admire yourself. This is a big plus.

It's amazing how the change in weather, the birth of spring, and the longer days make me feel alive again. I just want to be outside, commune with nature. Somehow, all winter I just wanted to hibernate, stay indoors, and comfort myself with food and sleep. Admittedly, my headaches were exhausting. But the cold darkness of winter really added to the gloom and despair I felt inside my head. It added insult to injury.

We all know that weather has a huge effect on mood, but the combination of chronic pain and a dark, cold, bleak landscape makes you feel simply awful. Awful. But then again, the grass is always greener. I imagine that being in a hot, bright, sunny landscape all year 'round would drive me up the wall as well.

So my spirits have lifted with the coming of spring.

Calgary has a late spring. And it's pretty arid in the shadow of the Rockies, so it isn't exactly lush here at the best of times. The trees on my street still haven't broken bud, but the grass is greening up a bit, and the weather is warm and breezy, about 15C today (59F). Calgary actually ranks at or near the top of the list as the *sunniest* city in Canada, but we don't get the heat and the rain, so gardening-wise, it's only a Zone 2 or 3. This depresses me, because I'm a garden lover. If I had a garden (and were independently wealthy and didn't have to work), I bet I'd never have another bad day.

For the past few years, I've taken an annual trip to visit a girlfriend in Victoria (my favorite city in Canada, my favorite girl-friend in Canada). Last year I travelled in January. It was about -20C (-4F) when I left Calgary, but Victoria-by-the-sea was warm, green, lush, and damp, in bloom with crocuses and daffodils. I was never so simultaneously happy and depressed.

I'd give my left arm to live on the west coast, but there isn't much demand for chemical engineers who specialize in petrochemicals. For now, I'm tied to the oil industry, so Alberta's the place to be. Alberta, where everyone I know makes $200k a year and drives a bloated great SUV and owns a 5000 ft2 house. Haven't they heard of global warming? I hate it here sometimes, because everyone seems rich and gloating and ignorant. Everyone seems to be all about the toys, the big tv's, hot tubs, excess. Everyone except David and I.

Don't get me wrong, I'd love a new BMW and a gorgeous house big enough to get lost in, but consumerism is not what we're about. But then again, I can't complain. We are so gainfully employed it isn't funny, compared to most places in Canada. And there are great people here too: thinking, conscious people. And Calgary is a blossoming place, if not literally, so we are here for a while. David works in the industry too, so we are kind of stuck making a good living but dreaming of the day we can move to Saltspring Island and start a goat farm (or something). I can do my pottery and photograpy full time and David can build furniture. We can be eccentric recluses who grow our own food and live on the sea shore. That is our whimsical dream. Gardening in the morning after milking our Jersey cows, organic of course. Reading Something Edifying in the afternoon. Cooking epicurean feasts with David. Drinking wine made from our own vines. Ahh...we dream.

Anyway, all that to say thank God that spring is here, and I wish I were on Saltspring. But I'm not, and I get depressed thinking about the fact that I'm not, so I better get back to what I was saying, which is:

Spring is making me feel better, more positive, more *sane*. I woke up this morning with a brutal headache when my alarm went off at 9:30. I got up and opened the window and went back to sleep, waking again just before noon. Waking so late, I was discouraged and annoyed with myself, because I'd wasted half theday in bed. But the extra sleep burned off the headache, so I couldn't be too sad. I awoke, albiet late, with birds chirping outside the window, and a soft breeze sweeping into the room. The cat was at the door, either happy to see me, or excited to get to the bird sounds coming from inside my room. I felt well for the first time in months.

So I went to the Y and tried to be happy about it, and come to think of it, I actually am happy about it. I'm looking forward to summer and feeling like change and renewal are around the corner. It's so hard with headaches to maintain any discipline in life. And it's also easy to get stuck in the mire when you're already feeling so physically awful. It is a downward spiral really, being in pain. I am just hoping I can keep my spirits up, and re-engage in life a while, now that summer is here and I don't have winter to hide behind.

Exhaustion & Headache

The main struggle I have with chronic headache is exhaustion: physical fatigue, spiritual fatigue, emotional fatigue, a deep soul-tiredness that never goes away.

Headaches themselves are no picnic. They hurt. Day after day my head hurts - incomparable daily pain from the inside out, pain that never ever leaves. My neck and shoulders ache all the time, the muscles tight and sore, stiff, as though I just walked out of a car crash without leaving the house.

But the biggest impact is exhaustion. Living a normal life, working for a living, participating in relationships, doing routine chores is exhausting when you live with chronic pain. It takes so much effort to do what normal people do. I come home from work totally drained and never seem to have the energy to complete my "To Do" lists. There is even less energy for non-critical tasks like hobbies, or planning projects. Even thinking about what to cook for dinner seems like too much work. Any non-critical thinking is deferred.

The constant fatigue leads to a life half-lived. Headaches assail my intellect and destroy my passion for anything and everything. I think the lack of passion comes simply from the exhaustion. When you are tired all the time, and in pain, the brain is pre-occupied and has little time to get excited about anything. Excitement, desire, happiness, dreams...all those hopeful, forward-thinking things aren't part of your life.

You get accustomed to this life, accustomed to poor sleep, to waking up with a bad headache, tired and spent before you even get out of bed. You get accustomed to living a shadow life, a shadow of what you could be living.

The lack of passion and lack of interest in life becomes normal. If I manage to have a couple of days in a row of low-grade headaches, there is almost a *euphoria* feeling that comes when you wake up with a 1 or a 2. In that euphoric state, I realize that this is what normal people feel like every day. It is a luxury to have a day spent feeling well. I always use the word *euphoria* to describe what normal feels like to me. It's like the weight is suddenly lifted and you are 200% yourself again, on over-drive, ready to catch up on the life you msised.

On these days, I get excited about everything. I want to clean the house, look up courses I could take, call everyone and talk, go out for a run, DO THINGS. On those days, although it sounds trite, I am suddenly interested in going clothes shopping or home decor shopping. I want to look good, and be surrounded by pretty things. I care again.

But the next day, the headache is back and I have no energy for how I look, how clean my home is, what clothes I wear, whether I am excelling at anything. I just want to get through the day. You go from bliss to exhaustion in a few short hours.

The tiredness accumulates. Even if you get a "good" day, the headaches return and within minutes, you feel as bad as you did the day before. I guess it's like that with pain. When you feel good, you forget what pain feels like, and when you are in pain, you forget what good feels like. You can't even remember it intellectually, other than remembering that for a few fleeting hours or a day, you actually felt alive again.

I rarely feel happy any more, and if I do it's fleeting. That makes me feel guilty because I have so many things to love about my life. I'm in a great relationship, earn a good living, and have people around who love me. I am blessed with many gifts: an education, a loving family, a wonderful Mom, a loving boyfriend, generous friends, financial security, a warm place to live, a nice car, an otherwise healthy body, a first world cornucopia of wealth.

I appreciate those gifts. I always recall a quote I read which said something to the effect of "if you feel like you have nothing to be happy about, think about all the things you possess that, if you didn't have them, you would long for." It makes you realize how much you have and how little you lack.

But all that blessed life loses its lustre when you hurt every day, when your body is soul-tired. You live life, but you don't live it. You function at a rudimentary level, but you don't live in celebration. Your pain and your fatigue is all-encompassing. It occupies all your thought, and all your emotion.

All you can do is hope that tomorrow will be different. That you will get the euphoria again, that you will get a chance to come alive, to live the life you were given.

Dell, Dermatitis, & Magnesium

Hell hath no fury...

like a woman with dermatitis, computer problems, and head pain. Not to mention *issues* with magnesium.

Dell Hell: My computer's been on the fritz for a few weeks, shutting itself off at will, freezing up, other antics. Nothing's more disconcerting than a computer that suddenly shuts itself off. So I gave in and called Dell.

Last time I phoned, I was pleased with the experience. I got a bright tech in Texas who breezed me through a rapid-fire troubleshooting which solved my problems in 30 minutes flat. In that brief time, we checked every nook and cranny of the computer, fixed 100 different things, downloaded a few new *.dll files, and practically did everything but take out a screwdriver and dismantle the thing.

This time I was on hold for at least 20 minutes. Then I was connected with (where else?) India, Land of Divine Food & Call Centers.

My rep barely spoke English, but I conceded, it was better than my Hindi.

After asking me 500 questions (they only took my "service code" in Texas), he eventually asked what was wrong. Or rather, I interrupted the questionnaire with "can I tell you the problem now?" I explained and asked if he understood. I felt no reassurance over this, so I tried speaking more plainly. Eventually I resorted to "it turns itself off" instead of trying to convey the vague subtleties of my electronic problem.

He was unresponsive and I kept asking "do you understand?" to which I received dead air. The phone kept going dead as he put me on mute over and over again. I alternately heard the hubbub of the call center, and the sound of silence. I guess he was searching for answers on the internet. Eventually after me asking "hello? hello? are you there?" he would come back on the line and apologize profusely.

He took me through a series of common troubleshooting steps that took a full hour as he kept exiting the line for minutes on end, returning with "ok, now we will try something", then disappearing for a while longer. At one point, after deleting a few temporary internet files and re-setting some Explorer options, he asked me "may I ask if you are happy with your service from Dell?" to which I replied, "happy? we haven't done anything yet!"

Basically, after an hour, I ended up deleting a few temporary files, re-set my BIOS to the factory defaults, re-set my Internet Explorer to factory defaults, and unplugged my modem. I could have done this in grade 5.

I was frustrated. A basic command of English and some computer skills should be required for these jobs. Apparently not. I would have had better luck ordering pizza. Or maybe aloo gobi.

The only thing that perked up my rep was when he gave me my Case Number so I could call back if I had Any More Problems. I was given the case number a total of 5 times during the call, each time after I asked a Particularly Daunting Question.

Even on Dell's website, it appears they're keen to sell you stuff, but less keen to provide technical support. And they'd much prefer you read their 5000-page FAQ instead of calling and bothering them with your tedious troubles.

I'm fed up with businesses taking my money and not providing service in return. You're Dell's best friend when you give them your $5000, but you need to talk to a pizza guy in India when you want service. The same seems to hold when buying a car: you have many good chums at a care dealership when your wallet is full. A lack of care in service isn't acceptable, but it seems to be the norm in this post industrial world.

I've concluded that modern technology is meant to be disposable, unless you want to talk to India for the rest of your life.


Dermatitis Hell: Besides headaches, I've developed seborrheic dermatitis on my face since moving to Calgary. That's dandruff...On Your Face. My skin now gets shiny red, flaky and itchy; it then heals itself by forming rough, dry, scar-like tissue. A few days later, it clears up. Then for no apparent reason other than I have something important to do, it flares up and I go through 3 days with a red, raw, flaking face.

Now at least, my exterior matches my interior hell.

To make things worse, my ancient dermatologist (the one I asked to see since I didn't want a Botox-pusher) prescribed a steroid/anti-fungal cream to use for flare-ups. I was concerned about the steroid use on my face: having had eczema as a child, and eczema on my hands as an adult, I know that steroid creams thin and damage the skin. But he laughed and assured me I would have to "slather it on for years" to see a problem.

Now I have rosacea. I've used the cream he prescribed over the past 2 years to control the flare-ups, but recently I've developed rosacea on my face, with regular redness appearing around my nose and forehead. It flares up, then goes away.

A few weeks ago, I visited my allergist (yet another of my inner sanctum of specialists) and asked him about my dermatitis/rosacea. He said "you don't have seborrhea, you have eczema on your face. Seborrhea doesn't itch". Now this guy is no dermatologist, but he does specialize in auto-immune conditions like allergies, so i suspect he knows a thing or two about a thing or two.

I mentioned the rosacea, and he said "you likely have steroid rosacea, from overuse of steroid cream." Then he gave me a prescription for a much milder steroid (apparently the one I was given was about 50 times too strong) and referred me for skin patch testing in late April to determine the cause of my demonic skin.

Eczema is complex, but it's just a fancy name for dermatitis (which means "irritated skin"). Eczema can be "atopic", which I understand to mean as a somewhat genetic, built-in predispostion to irritation, or it can be "contact" meaning there's an enviromental trigger. The skin patch tests will determine if I'm allergic to my shampoo, moisturizer, sunscreen, laundry soap, or what.

Since starting the milder cream, my face has looked pretty good. But I'm apprehensive about using it with the rosacea issue. After switching creams, the rosacea did subside for a few weeks but flared up today. At 4pm, I went into the bathroom at work and my nose was bright red and shiny and my face was all red. I had a scorching headache and now looked as bad as I felt.

Then I came home and called Dell.

Magnesium Hell: My neurologist agreed that I could try Mg supplements after I cited an article to him regarding its use in treating headache. He was well aware of the claims, but said the results are "equivocal", meaning "we don't know". He advised me to try Magnesium Citrate, as it's more easily absorbed than the oxide version, and to use 600mg. I started it a few weeks ago.
Let's just say, Magnesium causes diarrhea. Big time. I cut back to 150mg a day since I couldn't tolerate the 600mg and decided I better work up to it. But I'm afraid I may die of dehydration before I can see if it cures my headaches.

I'll write more about Mg later, once I raise my dose, and see if I can tolerate it. I read an abstract on PubMed that suggested it might be helpful for dermatitis, and I mean to go to the U of C medical library and get the whole article. Apparently it worked in rats.

Now that my computer is fixed (or whatever), maybe my skin and head will improve with the Mg. And maybe I will have a normal bowel movement for a change.

But I doubt it.

Paris, Ottawa, TO....YMCA!

I attempted to turn a new leaf on Saturday. I went to the Y for the first time in weeks. If you want to add it up, I probably haven't been there 10 times since last summer.

Ahhhh....last summer: after 11 years of working out on regular basis, I finally gave in to the exhaustion of daily headache and just stopped keeping my gym schedule. An abysmal lack of motivation didn't help. It wasn't intentional, but I started the descent by taking "breaks" on my usual gym nights. Days turned into weeks, weeks into months.

For years, I've been an exercise disciple. In the late 80's and early 90's at McGill, I walked a bazillion miles a day and didn't waste much thought on exercise. I weighed maybe 110 lbs in those days, so it didn't seem that relevant either.

But upon returning from grad school in Paris in the summer of '94, I took a summer job in Ottawa.

Travelling from Paris to Montreal (and two days later arriving in Ottawa), I was utterly dejected. Ottawa? What possessed me to take a job in Ottawa? Hadn't I heard the quote, "once they've been to Paris, you can't get them back on the farm" (or however it goes)? But I scored a plum summer job at the National Research Council in Ottawa, working for an esteemed researcher. I decided to give it a shot despite my misgivings about the months ahead in a middle-of-the-road government town, wearing a lab coat, with my head stuck in a fume hood. To make things palatable, I decided to live downtown (for the culture) on the U of O campus.

Unfortunately my job was many miles out of town and, as usual, I was without a car. So I dug my dusty, rusty bike out of storage in Montreal and decided to have an adventure: I would bike to work all summer.

Leaving Paris, exercise was the last thing on my mind. As is proudly advertised, no one exercises in Paris. I saw one gym, at Les Halles, the whole time I was there. And having been a starving student, I'd literally lived on baguette and fruit for months on end, with the only spice being a weekly pain au chocolat or poppyseed roll from the jewish quarter. It's a little known fact, but day-old baguette is excellent toasted, if you can slice it. So I didn't have a weight problem, but I felt tired from the long days of study and a rainy, grey Parisian spring.

Despite the shock, it didn't take me long to embrace Ottawa. It was a city of young people in the summer, kids working for government and lobby groups, and everyone playing some sport or another. That was the summer I fell in love with exercise, if such a thing is possible. I even got a membership to the U of O gym. I started running, playing volleyball at noon with the other students. I biked miles daily, and biked or ran out along the canal to Dows Lake and back almost every night. At the end of the summer, I was tanned and fit (the last summer I had a tan, by the way; after that I gave up the sun!)

After finishing my last grad courses at McGill in the fall, I moved to Toronto in January. I took a membership to Bally's on Bloor, a fantastic gym where you could watch the rich shop on the street below, at Tiffany's and Prada, while running dejectedly on your third-floor treadmill. But I did see Captain Kirk (William Shatner) work out there, and Jean-Claude van Damme (he's a very tiny man without a gram of fat), and actress Polly Shannon (equally skinny but almost transparently pale). Atom Egoyan and his wife strolled past one night as I was leaving. Ahhhh...but those are stories for another day.

I also picked up running again in Toronto, city of ravines and off-leash parks that are excellent for runners, if you don't mind being chased by dogs and/or homeless people. I lived in lower Forest Hill, so I would torture myself by running through sumptuous neighborhoods chock-full of old money mansions covered in ivy. I remember running and day-dreaming about what it would be like to grow up in those amazing stone houses, go to some posh girls' school, and have a horse or two. I always thought "who gets to live there?" I ran several 10k's in those days, and biked every street south of Lawrence and north of Lake Ontario. I biked to tennis lessons in Rosedale, out to the Beaches for afternoons (and back late in the evening...a cold ride home in a t-shirt), and sometimes down to Lake Ontario. Mostly I biked the back alleys and side streets and discovered corners of that city I still miss.

But on with the gym thing: I missed Bally's after I moved to Calgary, where I joined a decrepit World Health in the northeast, close to work. But I liked the "Ladies Only" section, where I worked out on sober dusty-rose equipment with quiet, modest ladies at my side. Most nights, I pretty much had the run of the place, and managed to stay on my gender-specific side, avoiding the too-friendly, fake-tan, bald-on-top dudes with mullets who liked to help the "ladies" with their workouts.

Eventually, I joined the Y and said a swift goodbye to World Health, a gym I hated more each day, for its mediocrity, mostly.

But shortly after my Y days started, the headaches began to worsen, and work became more demanding. I never seemed to really get back into exercise after that.

It is so easy, or so necessary, to come home now and rest. To lie on the bed a while, call David, read a little, watch the tube, check my email, sit quietly while David cooks dinner, do some laundry. How did I ever fit in 4 workouts a week with a difficult job? How did I balance it all? How did I find time? Now I can barely keep up with life at home, let alone being in shape.

But back I go, dreaming of falling in love with fitness again. But I probably never will. From here out, I think it will be a necessary evil.

I'd like to start horseback riding again. After moving to Calgary, I took english riding lessons for almost 2 years. At 33, I was told I was a "natural" so it was too bad I was about 28 years too late starting. But I didn't mind; I loved riding with 8-year olds. I always had a bigger and better horse, and made many little friends at the stable. I once met a little girl who said I was too "big" (meaning too old I suppose) to take lessons in her class. I asked her how old she thought I was. "You must be at least 20," she said disparagingly. Wow, that is old.

So maybe I'll try riding again if the Y doesn't work out. Get back on the horse, as they say.

Acupuncture & Dry Needling #3

Today was Visit No. 3 with my mean physiotherapist, the one who sticks needles in me.

After last week's session (several million acupuncture needles plus some dry needling), I had a miserable evening and was practically disabled the whole weekend. My back and neck ached like mad both Saturday and Sunday and my headache, not to be out-done, rose to the occasion with great fervour. It was like my body was saying "you think you can hurt me? think again lassie".

But shockingly, I've had a pretty good subsequent week, headache-wise.

Consulting my daily pain diary, I see that most of the week I've been in the realm of 2-4 (out of 10) during the day, meaning fairly bearable head pain. I'll explain my pain scale in a future blog, but suffice it to say that anything 4 or less I can live with. I did have a couple of evenings at 5 or 7, and yesterday afternoon was killer. But, over the week, I was fairly functional during the work day and felt relatively good in the mornings. And if I can leave the office at less than a 4 a few days in a row, it's worth noting since I generally flare up to a 5-7 in the late afternoon (stress, computer work, busy office) and that ruins my evening.

So, maybe this acupunture stuff is working.

I was skeptical, and wonder...is it just the forced relaxation mid-day? After all, I'm laid out on a heating pad, made comfy with pillows, and left alone with my acupuncture needles for a full 20 minutes, allowing my chi ample time to re-configure itself. After I reach zen status, I get dry needled in a few spots.

Dry Needling: It's also labelled "Intra-Muscular Stimulation" (IMS) or other such names, and was invented by a masochist. It's basically an invasive technique which forces a tight muscle to relax by jabbing it deeply with a needle until it gives up and relaxes.

The therapist finds a trigger point (tight, tender spot) in the muscle (for me, my traps, neck or pecs), and then stabs it with this epi-pen-like device which contains a thin needle (about the gauge of an acupucture needle). The needle punctures the skin and enters the muscle, up to an inch or two, I suppose, depending on the depth of the muscle/knot, etc. Now, being a muscle, and not liking things sticking in it, the muscle (especially if tight) contracts angrily around the needle, causing a sharp charley-horse-like sensation. Then the muscle suddenly relaxes and the needle is withdrawn. Basically the muscle decides contraction isn't working, and since it isn't capable of much else, it relaxes.

The whole thing takes a mere second or less, although I've had one therapist leave the needle in and wiggle it until I writhe in pain and scream "give!"

I do find it hurts like the dickens, but the sensation is brief. Basically, it lasts long enough for me to say "ow! ow! ow!", wince, and wiggle around a bit. If your therapist is nice, he or she will alleviate the situation by saying "oh sorry..." meaningfully, and repeatedly, after each scream.

You're supposed to relax (and breathe) during the needling, but I forget to do both especially as I start to clench up in anticipation of the charley-horse pain.

For me, the results haven't been monumental. But I will give it a longer try. I find my muscles still feel tight and hard to the touch. But the second time I ever had it (in a previous life), my headaches relented considerably for a whole week. So I'm still waiting for that train to arrive again.

The brilliant minds who study this stuff are still unclear of what the role of the muscles is in chronic tension-type headache (CTTH), but many of us with CTTH have excruciating neck and shoulder/upper back pain to go along with the headaches. Yet it does seem that the muscles do have some triggering role in the headache, because all these muscle-oriented therapies can give some relief. Like massage, dry needling can give you a brief respite from your headaches, if you're lucky, and also combine it with Being Perfect (going to bed on time, staying away from no-no foods, not getting stressed, not doing anything interesting, not living).

I find that nothing gives me permanent relief.

Maybe it's because headache is a complex witch's brew of triggers, and mending one doesn't take the pain away. I guess that's why headache sufferers have to try many things, together and individually, to try to bring their cumulative trigger load below the headache threshold.

All I know is, it's a lot of work, time, and money spent running around to appointments and keeping tabs on every dimension of you life. Salvation doesn't come cheap.

Feeling good, looking good? Not quite. More guilt than you can shake a stick at...

Before I dive into Part II of the guilt rant, let me tell you about today. It's a perfect lead-in...

I had an exhausting afternoon. I charged into the office like a trooper this morning and got loads accomplished, but I crashed in the afternoon. My energy was suddenly sapped by a blistering headache (7/10), an angry, aching back and neck. I suddenly felt drained, intellectually-spent, emotionally depleted, and soul-tired. After reading the same paragraph in an article about steam ejectors about 14 times, I gave in and fiddled with my computer-model, moved things around, changed the way things looked, not adding anything meaningful.

So I came home, and instead of doing chores like I'd planned, I crashed on the sofa and watched TV. Which should be call TV: The Downward Spiral.

After watching the news, I was hooked, so I watched the all-new "Superstar Handyman Challenge" on HGTV, and made some pasta. While it cooked, I ate half a bag of York peppermint patties, mostly because I deserved them. Then I ate some organic chocolate almonds David brought me last night. Then I ate the pasta (with tomatoes and olive oil), a couple more peppermints, and some fruit cocktail. I felt sorry for myself, like I deserved some prize for getting through the day. I'd also just consumed about 2000 calories.

Herein lies the problem...headaches take so much from me that the simple task of getting through the day turns into a challenge. There are no resources, after a day of struggling to stay productive at the office, left for anything else. Not for self-discipline anyway.

I used to be a die-hard gym-goer. For years, I've worked out at least 4 days a week, walked to work, watched my diet, never ate seconds, stayed fit and trim, strong and capable. Last summer, exhausted from daily headaches, I ditched the Y and went every 2 weeks instead. For the past several months, I've gone maybe twice.

I've gained about 6lbs since last summer, and about 10lb since two summers ago. Mostly I've lost muscle. If I lived in the Renaissance, I'd now be the ideal form...soft and round and feminine, my body re-capturing its "natural form". How earthy! How organic! At 136lbs, I'm far from unhealty or unattractive, but I used to be fit and trim. And it's plaguing me because I find society's obsession with weight to be maddening. It's time for a backlash! But I must admit, I don't look particularly good soft and round. My dress pants and jeans agree wholeheartedly. I don't want to know what my summer skirts will think.

Sometimes I feel good about this weight, that I'm more real here, that this is the me that results from normal eating and normal exercise. But I feel, by cultural standards, like I've "let myself go". And the reality is, sitting in front of a computer 8h a day isn't exactly hard labour. In the modern age, we need to exercise just to stay level. Women in the old days didn't need to work out. My grandmother milked 40 cows, hung out a load of laundry, and churned butter all before 7am. But times have changed.

And I have changed. All because of headaches.

I quit the gym because I just couldn't be Super Woman anymore. I decided my career was a priority (paying the bills, I mean), so I decided I needed to take it easy in the evenings, focus on ME, focus on relaxation, pacing, self-management.

Over-stimulation is a killer trigger for me, so avoiding the gym and crowds in the evening guaranteed headache-relief. I also have exertion headaches, which meant I often had brutal headaches after working out (or even walking home from work), so quiet evenings allowed time for the day's pain to dissipate, and assured me I would wake up feeling somewhat normal.

But 6 months later, I still have headaches AND I'm out of shape.

So the guilt gets worse. I now hate the idea of the gym (all those people), can't face it at the end of the day. And all the other guilt comes...the fact that I'm not doing my photography, not taking courses like I always did, not pushing myself in new directions, not engaging with friends much, not bothering to dress nicely ("clean and ironed" is the new mantra where "stylish and polished" used to be). I haven't even gone to the mall in 4 months. At least I'm saving of money. But I'm not longer the person I used to be.

And while it seems like it, it isn't about the clothes and body, or doing Cool Things, it's about feeling out of control. I was a person who was busy and productive and interesting, who couldn't wait to do new things. I am now a muscle-free chick who spends her evenings doing sudokus with the cat while my saint of a boyfriend does what needs doing.

I need help.

But I also shouldn't be so hard on myself. I live with something few people understand. It could be worse. And anyway, half the country lives like this and nothing's even wrong with them. But being an overachiever, I feel like this hiatus from my basic character is killing me. I need to figure out a way to take back my life. Or maybe I need to accept this. As my pacing workshop instructor said, "you need to write a new definition of success." Until then, I'm mourning. I'm guilt-ridden.

I'm wearing a sweatshirt to work tomorrow. At least it doesn't have a basket of kittens on the front.

And there are peppermint patties in the freezer that need some attention.

Headache & Guilt, Part I

Headache is an illness like any other, although most headache sufferers I know don't like to talk about it in those terms.

But the headaches I experience daily are exhausting at the best of times, and wholly limiting at the worst. There's no bloody end in sight, so skip the optimism. And the lifestyle effects are huge. Yet I don't talk about it to many people. And since I look put-together on the outside, and act normally much of the time (or at least *fake it* when my head is aching so badly I can barely string two thoughts together), even I sometimes forget that I'm not "well". And I often downplay my headaches by thinking, "well, at least I don't have (insert bad illness) to contend with." So I often don't acknowledge the impact all this is having on my life.

I recently attended a headache workshop at the Foothills Hospital here in Calgary. In the class, the counsellor broached the subject of emotional impacts, and the feelings inherent in our chronic headache experience. I imagine these emotions are familiar to anyone with chronic pain.

People volunteered a grand list of dreary emotions and feelings: sadness, anger, resentment, disappointment, frustration, fear, dread, desperation, and soul-tiredness, the kind a good night's sleep doesn't lift. They talked about all the impacts on their day-to-day lives. But the emotion that resonated most with me was *guilt*. When guilt was finally mentioned, it was like a light came on in the room. Everyone murmured in agreement, nodding their heads, smiling agreement, practically screaming "YES!". Guilt was, by far, the best emotion on the list.

Guilt is my big headache emotion. I don't suffer from the others much. I'm rarely angry and I'm occasionally sad or frustrated. But my optimism about this illness abating tends to wash those emotions away as soon as they arise. What doesn't go away is guilt; all-consuming, omni-present guilt. Guilt as steady and sure as a sunrise. I , for one, have guilt for all seasons.

I have career guilt, crappy-girlfriend guilt, failure-at-life guilt, lack-of-accomplishment guilt, lack-of-self-discipline guilt, not-going-to-the-gym guilt, not-calling-my-friends guilt, not-taking-that-class guilt, forgetting-to-take-my-elavil-not-going-to-bed-on-time-drinking-red-wine guilt. And every-day routine guilt.

Career Guilt: comes from not being able to *compete* at par with my colleagues, my bright-eyed bushy-tailed colleagues. I'm bright alright, but not bushy-tailed, and though I keep moving up the ladder, I often function at reduced capacity at work. Imagine what I could accomplish, how Type A I could be, if only I felt good once a week! And I can only dream of what it would be like to sit in a meeting with a clear head, not a pounding headache. Engineering's no picnic on a good day, but I manage to do Clever Things at work despite feeling like I just fell off a truck. Considering the fact that I'm well-respected in my field, manage to score annual bonuses, and still have a great professional reputation, it's clear that I've managed to white-knuckle my way through my career for the past 8 years. But most days, I work so hard to appear "normal" at work that I come home exhausted and fall into bed at 7pm, for a nap, for a rest, for some relief from all the horrible stimulus. It's so much intellectual effort just to do my job, that the added effort of *faking it* to appear normal, and act normal, drains me.

I have to force myself to keep up with professional training, make extra efforts, take on new challenges, network, talk to people, participate, when I would rather be left alone to crawl under my desk. There's nothing worse than talking to Boring Colleagues about Boring Subject Matter when your head is a steaming cauldron of pain. And the hours...it's not uncommon for me to work late to make up for the lack of progress during the day. This only adds fuel to the fire.

Relationship Guilt: the fear that I'm a crappy girlfriend, a poor choice of life partner. David has only known me as Terri von Headache, and assures me that I'm perfect as I am. But I wish I could show him the real me, the 100% normal-all-the-time me, the person who could be so much more of everything if only she felt better for 5 minutes.

David picks up all the slack. He cooks me dinner, makes lunches at 10pm for tomorrow, does chores around my house, gets out of bed 4h before me on the weekend and washes my car and buys me groceries and makes breakfast before I even awaken. He reminds me to take my drugs, coaxes me to bed on time, pushes the cart at the grocery store and carries all the groceries (because my back is aching, and because he's Good). He listens to my cues, and the life we lead is purely based on What Terri Feels Like Doing. He cares infinitely. He asks me how I feel (the answer being some variant of "awful"), and takes on far more than he should have to.

So I'm guilty that I'm not more fun, more interesting, more light, more supportive, that I need to go to sleep on a schedule, that I require all this attention, that I 'm the center of focus, and the basis of every decision. Basically, that it's all about me. You see, I'm not an "all about me" kind of person, but I've become one, purely based on feeling crummy all the time and the energy that that sucks out of the room. My guilt is also that I don't support him as much as he may need. When he comes home from a bad day, it's often superceded by My Aching Head. I do my best to be present and giving for him, but sometimes I feel sorely lacking and I hate it. I hate being the receiver of all this giving, emotional and otherwise. I appreciate it immensely, but I feel like an enormous black hole for his energy some days, and I can never make up for it. So I long for days when it can be about him, or us, and not always me.

Tomorrow...more kinds of guilt than you can shake a stick at.

Elavil: The Good, The Bad, & The Ugly

I'm back on Elavil (amitriptyline) after a brief hiatus taking nortriptyline (Pamelor in the US). I restarted the Elavil about 5 weeks ago, gradually increasing my dosage from 10mg to my current 40mg. Since my headaches are still far from being under control, it looks like I'll need to increase my dosage again soon.

I've taken Elavil for years, since 1998 or so when neurologists at Sunnybrook in Toronto recommended it. But I took it erratically; my h/a's weren't "full-time" in those days, so I'd skip doses if I forgot to take it early in the evening (sedation) or if my h/a's had subsided for a few days, a week or more. I was still taking it in Nov. 2005 when I saw a new neurologist in Calgary; he suggested we try nortriptyline since I had one big problem with Elavil: sedation. Sadly, nortriptyline didn't work as expected, so I'm back on Elavil. Only now, I'm taking it regularly, being religious about it. It's a drug I love to hate, so here's my diatribe:

Elavil: The Good, The Bad, & The Ugly

The Good: if you can tolerate a high enough dosage, Elavil may control your h/a's, or at least give you "good days". It's also an anti-cholinergic, meaning it makes you not have to pee as much. This is handy for me since I have a pre-existing bladder problem that can flare up and leads to urgency/frequency issues. On the Elavil, you don't have to pee as much, and life is normal. Off it, and I wake up at night needing to pee. Also good: you sleep like a baby and don't wake up in the night. Since Elavil is primarily used as an anti-depressant (at higher doses), you might get the bonus of not being nearly so depressed as you would have been (considering you have headaches every single day of your melancholy, grey, apathetic existence).

The Bad: It can give you dry mouth (hence my gum-chewing addiction..I always hated gum chewers and now I'm one of them) and give you constipation. The latter is bearable, but often you feel like you have a 10lb brick in your abdomen and don't "have a movement", to be euphemistic, for daaaaays. Eating lots of All-Bran and fibre helps. Luckily David has high cholesterol (well, that isn't the lucky bit) and has made broccoli a daily fixture in my life.

The Ugly: Sedation. Wicked sedation. You have to take your wee blue pills EARLY in the evening if you expect to get out of bed in the morning. I take mine around 8pm (earlier if I don't mind not having a life) and can barely drag myself out of bed when the alarm goes off at 6:45(luckily I live close to my downtown office). Honestly, I wake up and it feels like my body and brain are still sound-asleep. You get ready for work in full zombie-mode, going through the motions. Which reminds me of university: waking up on Elavil feels exactly like waking up after an all-nighter/cram session when you foolishly decided at 6am to grab an hour of sleep before your exam. Bad planning.

So, it's not uncommon for my alarm to ring for a full hour before I actually wake enough to realize I've been snoozing it while still very asleep. Once I manage to get up, I'm functional after about an hour, but typically I *wake up* around 10am, while sitting at my desk in the office, doing some Important Thinking. Some people wake up refreshed in the morning. "Refreshed" isn't in my vocabulary. Unless what you call what happens to me at 10am "refreshing" (I don't. I call it finally feeling normal, if being awake but having a blistering headache is normal).

MD note: I once talked to a resident MD who said residents are all addicted to taking Elavil when they finally get 48h off to sleep.

So that's the long and short on Elavil, in my world.

A note on nortriptyline:

My neuro put me on this before Christmas, and I tried it for almost 3 months. It's a weaker drug from the same family as Elavil, so we hoped for less sedation. I will talk more about it in a future post, but basically, I had a weird side-effect from it: stimulation! According to my pharmacist, this is a rare but possible side effect, an opposite effect in sedatives, kind of like those cough syrups that put you to sleep but wake you up with a racing heart. So, I couldn't stay asleep at night, woke two or three times a night and, even worse, needed to pee in the night! Did I ever miss my Elavil...the drug that makes me sleep 14h at a stretch, like a teenager. But which prevents me from functioning like a normal human being.

Town & Country (or Why I Love Robax Platinum)

Spent the weekend out of town with my boyfriend, visiting his Mom in the country. The quietly rolling terrain of Calgary gives way to prairie as you travel north-east. The 3h drive might be boring to some, but David and I appreciate the little details, can talk endlessly about nothing, and savour silence in each other's company.

On the drive, we spotted the following: a big black dog hunting in a vast, barren field (David missed this); a coyote standing alone in a equally vast but grassy field; a couple of herds of deer doing their thing; several sets of Canada Geese in chevron flight (thanks Joni); some rather large roadkill; many, many head of cattle on various acreages; a herd of buffalo; a hawk flying-then-soaring-then flying; a flock of tiny birds that flew like a school of fish over the highway; a pair of lost ducks arguing over directions (this way, no this way); a regal grey owl atop a telephone pole; horses and more horses; miles of railcars lined up on abandoned tracks waiting for salvation; long lines of freshly dug earth for planting new pipelines; plenty of farmers driving slowly.

The weekend was restful, sublime: a long Saturday drive in the country checking out dying Alberta farm towns; antique shopping; a Pep bar; bison-burger eating at lunch (I had the black bean chili); a supper of home-made asparagus risotto and to-die-for asian pork by my gourmet, David; apple pie courtesy of David and his Mum; a photo shoot with Lizzie the dog using the Ansel Adams black-dog-enhancing zone technique; long sleep-ins both days while David and Mum chatted up a storm in the kitchen; difficult sudokus; half of Lynn Truss's book "Eats, Shoots & Leaves", on punctuation, which is proving I'm not as smart as I thought I was.

Headache-wise, it wasn't great. Not until I re-kindled my love affair with Robax Platinum, a double-dose muscle relaxant with some ibuprofen thrown in. I've used it for a ages, but usually only at bedtime when my muscles are frozen knots and threaten to prevent sleep. I rarely take it in the daytime since it's not *sedating* really, just stupefying. So if I take it at the office, I end up sleepy and furry-headed. And usually still sore. But I awoke in such physical pain, emanating from my 900-year old neck and back on Saturday, that I popped one wistfully before the drive. An hour in...it found the target! I was in heaven, or at least comfortably seated in a minivan. I felt positively blissful for most of the remaining day. I felt calm and relaxed, rested, comfortable in my body for a change. The headache dissipated with the fog. What a gift. I feel good so rarely that it's euphoria when I do. And the quiet countryside drive added to the allure. So I will keep the memory of this day for a long time to come, because I fear I won't be able to duplicate this experience on my next try. Nothing ever works twice. So I will save it for bedtime, and the odd day when I feel optimistic, and you never know, it may work again.

Painkillers don't work for me. I've tried the usual OTC's Ibuprofen, Tylenol, Aspririn. I won't use Excedrin because of the caffeine and the risk of rebound. And Tylenol 3's never worked; the first time I got them I ate them like candy. Which reminds me....an aspirin overdose causes tinnitus.

So I go through my days with nothing to do but sit out the pain. After 9 years, I've given up the drugs, given up nursing myself with hot packs and cold facecloths. Now I just white-knuckle it through my days. But once in a while I get lucky and a quick fix works. I haven't tried the migraine drugs because my neuro says I don't have pure migraine, but he gave me some Maxalt to try next time I get a whopper. He said it would tell us if I have a migraine component. I think I do because sometimes the pain is brutal and it gets one-sided over my eye, or I feel it worsening when I stand up, and have vague nausea at times. But I read the warnings on the Maxalt and think I'd rather have the headaches than the side effects, like feeling I am suffocating, or that my chest is constricted and I can't breathe. I may take it when I get desparate one day soon. But for now, I will keep on with the other stuff...the sleep schedule, the physio, massage, Mg supplements, pacing, self-management (being happy when you achieve nothing with your day(s), and making as few waves as possible in my life.