One of the problems with an overburdened health care system: once you have a diagnosis, they give you pills and send you on your way. There is no followup therapy unless you can source and pay for it yourself. You'll have to teach yourself what to do, in all likelihood, using the pills to help you. And you may need to put up a constant struggle for the medication you can get, depending on the nature of your disorder, if the paperwork isn't sufficiently straightforward.
So it is here.
We talked about this in November, not long after a psychiatrist looked me in the eye and named the problem. She said attention deficit/hyperactivity disorder can go completely unnoticed in girls for a long, long time. Among other reasons, we don't actually get hyperactive so much. This is where labels of plain old "attention deficit disorder" or "AD/HD inattentive type" come in. To anyone else, it just looks like staring out the window.
She didn't say much else. There wasn't time, and it wasn't her job. As with everything else, this one was going to have to be entirely self-taught. I banked on the meds being able to help with this.
It took another six weeks to even reach that point. Most of my attention was taken up with jumping through paperwork hoops.
I got Strattera instead of stimulants. Stimulants aren't approved for use in adult ADHD here; Strattera is. Also, stimulants didn't look like they'd play well with me given medical history, and Strattera's antidepressant effects looked as though they might be useful here. The whole idea with non-stimulant ADHD medication is that it should be easier to obtain, since the abuse potential is so low. Doctors can dispense sample packs. Refills can cover more than a month at a time.
Prescription medication is a lot like soda or snack food. Just because one region gets it doesn't mean the rest will. What I've described above is the state of play in the US. They also have wonderful things like Diet Black Cherry Vanilla Coke and Baked Cheetos.
This is England. We get Pepsi Max Cino. We get Wotsits. And we don't get reliable access to Strattera.
A very small number of people -- fewer then ten worldwide -- developed severe liver problems on the drug. Some UK regional health authorities decided that Strattera should therefore be an absolute last line of therapy, and general practitioners shouldn't touch it even with a specialist's blessing. Even if that's the most sensible way to get the meds to them, and even if the psychiatrist remains involved in supervising the patient. Mine was one of the affected counties, although this was incredibly poorly documented.
This meant that I needed two liver tests to get on with treatment at all. I have to play a week or so of phone tag whenever I need a refill. My psychiatrist can't issue more than twenty-eight days' worth at a time, because she's based out of a hospital. If she's away for whatever reason, I can only get a week's cover from other people on her team. There is generally a risk that I won't be able to continue the meds because something will go wrong. It is actually harder for me to get this than it would be to obtain Ritalin, which isn't even an approved drug for adults. For that, there's an established handover procedure. For that, I could fill out a form and have the prescription delivered to my pharmacy once a month, right alongside the Allegra.
This makes me very nervous. I keep seeing shades of pemoline here. Taking medication on an ongoing basis is always a calculated risk. You have to gamble whether or not you're going to be worse off with the usual side effects than the disorder, and you sometimes have to decide if it's worth being one of the small number of people who get hurt worse than when they started. I've made that gamble a few times, and lost it more than once. It'd be one thing if this was just another thing which didn't help, or which makes a situation I can manage on my own a little bit easier.
The meds help. They really do. Strattera isn't what most people expect from an ADHD treatment, though, so far as I can tell. It doesn't go top-down. It doesn't bring focus so much as it lays the foundation to create focus. This isn't instantaneous. The advice leaflet suggests a rapid titration, but there's a fair bit of anecdotal evidence to suggest that building up slowly from a tiny dose is the way to go for many people. This is what I did.
I've been on Strattera since the end of December. The meds made it to my hands the day before I flew to America. I got the voicemail from my specialist telling me my initial blood test was clear I could start on the meds ten minutes before I boarded the plane. I took my first capsule sitting next to Eric, in his car.
The Strattera started working in April.
Let me wander off to the side for a moment. Let's be parenthetical.
One of the most frustrating things about having a known issue is getting advice about it. I feel horrible every time I offer it to someone else, because it's aggravating. I know that people mean well, and that whatever approach has worked for them or their friend or their great-aunt Martha. I know the article in question got a good response from others, and yes, that new approach with the zinc and the bananas looks awfully interesting. So I have to be polite, time and time again: "Thank you, but I've tried that and it doesn't work for me. Thank you, but the way things are for me, I can't incorporate that yet. Thank you, and I'm doing that, but the effect's not sufficient to deal with the problem without more help."
It's about as useful as just stop dwelling on it, put it that way.
Then, once in a while, I hit the Habbalah.
Yeah, I know. It's an In Nomine thing. Habbalah are demons. Before they fell, they were counselor angels called Elohim. Mind, the Habbalah still think they're angels. They're just doing God's work from the other side of the fence.
An Elohite would help you through your dilemma in a calm and reasonable way. If their advice wasn't something you decided to take, you'd at least know it came from a well-considered position. You'd know that your best interests were in mind at the time.
A Habbalite, on the other hand, wants you to feel bad for not doing the Right Thing. She has an agenda, and you should be strong and smart enough to realize what the right path is. He will tweak you and poke at you and screw with your emotions. Ultimately, the advice never came from a position of wanting to help you to begin with. The Habbalite wants to feel better about the Habbalite's worldview. If you tear yourself to shreds trying to fit with that, so much the better.
I run across a fair few Habbalah who aren't keen on the idea of taking psychiatric meds. This is distinct from the folks who are genuinely wary of them for whatever reason, or who feel a little hair-triggery around their overadministration, but accept that some people do need them.
I mean the ones who see the meds as evidence that you just weren't good enough to make it on your own. You weren't strong enough to break your own fugue, you weren't committed enough to stick with counseling, you weren't dedicated enough to stick to a routine or a diet or whatever it is that isn't taking pills for the rest of your life. Meds are what you do when you're desperate; hell, embracing a diagnosis is probably something you should only do if you're completely broken down. Extend this as appropriate; sometimes this becomes you weren't a good enough parent if you had to medicate your child.
There are variations on this. Here's one: if you do take the meds, it's only to get yourself to a point where you don't have to take any meds. If you're a fundamentally decent person, you should just be able to take what you learned from the meds and bull through it. (This one's especially hard if you struggle with a disorder that will kick you in the head if you don't keep up with the medication.)
I have trouble telling Habbalah apart from regular people at first. They all seem to smile the same way. They all seem to mean well. At the outset, they often say the same things. For example: "Well, have you tried X? You don't want to do anything so drastic without considering the alternatives. Are you sure you've got what you say you do?" (I've never been keen on what this assumes about the person, motive or no motive, but, well, we are forgiving.)
Or: "Do you really want to take pills your whole life?"
Tone is everything.
It's hard to remember the subtexts, too. "I'm strong because I don't have to medicate." "I was brave enough to come down off the drugs after three months." "My kid's special; I can't possibly blunt how special he is." And if the only way I can keep the passive-aggressive judgement hooks off of me is to fill in the blanks and repeat them under my breath, it feels like I'm manipulating myself. Which is just as bad.
Mind, we all have agendas. The best I can do is to remind myself is that none of us are angels here.
I thought the Strattera wasn't doing so well for a while, 'cause the advances seemed so tiny.
I can hold my head on one thing for longer and longer stretches. I can read the same book across three or four rooms of the house. I only need to be doing three things at once now to keep from feeling trapped.
(This has its drawbacks. I have just as many parallel strands of thought going on as I always had, but sometimes they don't seem to go fast enough. The worst symptom is a different sort of reduced creative output: not only am I shredding every word as soon as it comes out, there often aren't enough to add up to a complete essay when I'm done. I have to work more slowly, and it makes the loathing worse. Combine this with a tendency to scurry away for a week every time something stupid flares up, or any time someone says something I don't want to take focus from, and I cease to exist. I don't like this sort of slowdown; I prefer compressed thinking. Now I'm spending all my damned time writing the excessive context I was going too fast for a few months ago, and hating every moment of it because I know I'm bogging down the piece.)
And I still only have a certain amount of time I can spend per day on any given thing before the whole system craps out. Instead of being all smashed up against the wall when it happens, though, I'm frustrated because I'm not at the wall yet.
But there are also wins. Listing many of them sounds like I'm bragging about my ability to dress myself. The next one will as well, but it's important to me.
Like quite recently, while working on a website redesign. (Not this one, although that's next.) I had a bunch of almost organized files which all needed to be renamed by the date that they were posted. It wasn't straightforward enough to be automated sensibly; one would spend enough time sorting through the variations to accomodate them that one might as well rename them by hand. So that's what I was doing.
I'd been putting it off for ages. Working with numbers is a humiliating and embarrassing exercise for me. I am not good with numbers. I say this again and again, and folks giggle and dismiss it, because I must not mean what I say I mean. I am not good with numbers. I never have been. I have to concentrate on them incredibly hard for them to make any sense. I think in terms of containers and boxes and things in boxes, not lines and points along them. When I sort my pills, I have to sort them into calendar-shaped boxes to count them. The same goes for anything I need to count. It can take a while.
Looking at a list of posts with datestamps on them, then renaming their associated image files to match:
$ mv p122.gif 2004-04-29.gif
$ mv Unusual_Wallpaper_By_George.gif 2004-05-01.gif
$ mv p123.gif 2004-05-04.gif
registers to me as linear, not box.
I expected this task to take several weeks, or to have to ask someone else on the project to do it for me. I worried that I'd have to constantly count up to five and then to four again, or that four and five would change places on me, or worse. This is how it would have been a year ago. This is how it's always been.
It took two nights, batched off in four-hour rounds. I made one significant error which threw the count off by five, caught it after twenty renames, and was able to backtrack and mend within half an hour. I only spaced out noticeably when I was physically exhausted.
I couldn't do that before.
It's not that I'm desperately proud of the action -- that's not something I do; I think it's a negative trait to have -- but it was something I made note of. It's one sign of a foundation going in. Other people will still need to calculate the tip, of course.
For years, I'd have to explain to other people that there were things I couldn't do the same way, which required workarounds of me, because I didn't have that foundation. Trying didn't help. Being strong didn't help and being good didn't help because there wasn't any place for the skill sets to take root. I couldn't work top-down, so it's a good job that the meds don't either.
When taking 50mg/day of Strattera finally makes some of those skills kick in, I have to figure it's not just bashing my skull on the organizer tools that's helping. Yay, I can dress myself.
So, once a month, I worry. I get the Habbalah-voices in my head: "If you were just strong enough, you wouldn't need the Strattera." "Now you know what it's like, and how to start to do things. You could come off of this if you wanted to. You've learned now. If you just meditate to calm down, take your vitamins and keep your lists, you'll be fine."
No. No, I really can't. I really haven't learned yet. Not enough.
I've just started unraveling how twenty-something years of workarounds and compensations work, and I've just started getting my brain to a place where I can do that. And I don't know yet whether, if I come off the drug, things would stay in place. I suspect that they wouldn't, at least not for some time.
I get down to the wire and I keep worrying. One person or another won't or can't dispense. It takes at least 24 hours, sometimes longer, for the drugstore to get supplies. It's a week of planning for twenty-eight more days of chances. I don't have the new coping mechanisms down well enough yet to go it alone. I'm not strong enough yet not to get caught up in someone else's agenda.
Sooner or later, the fragile system might break down. If that happens, I don't know what I'll do. If nothing else, I'm going to find myself in Canada sooner or later, starting a whole new set of relationships with a whole new set of doctors and a whole new set of regulations.
Presumably, I'll at least have this to go on. I'm working as fast as I can.