Playing "What If...?"

On my really bad days, I play the "what if" game:

"What if" I'd been on meds when I was in elementary school? Would I have had more friends?
"What if" I'd been on meds when I was in junior high? Would I have been a happier pre-teen?
"What if" I'd been on meds when I was in high school? Would I have done better when the work got harder?
"What if" I'd been on meds when I was in University? Would I have done better across the board?

But then it gets into this:

"What if" I'd been diagnosed as a child, instead of as an adult? Would I have spent six years working with autistic children? Would I understand the perils & difficulties facing autistic people and others who have disabilities as well as I do? Would I be able to 'birth' projects as fully formed as I do?

I don't know. Nobody does. There is no way of knowing.

I would like to be able to monitor myself a bit better than I do. And I wouldn't mind having better social skills.

But there's no guarantee that having been diagnosed as a child (especially in the late 1970's and early 1980's) would have gotten me the treatment I needed in order to learn the skills I didn't learn "normally". (In fact, it's very likely that it wouldn't have happened at all.)

That is a comment I made to the most recent post over at Autism's Edges.

Mothersvox, Estee, and Zilari all made posts this week (and we're only halfway through the week, so...) about the use of medication.

The post I made the above comment to is about the difficult decision to use Focalin, a type of stimulant medication, with her daughter.

Estee's post is about using medication to change children's behaviour, and touches on the question many autism parents are asked - "If there was a pill that would make your child not autistic, would you use it?"

And Zilari's post is about the good and the bad of medication, for she has experienced both.

In my last post to this blog, I talked about the foolishness of thinking that a "simulation" can, in any way, really help someone understand what it's like to be/have <insert disorder here>. This post is about medication.

For me, the decision to use medication for my ADHD was not exactly a difficult one. I had already been reading up on it, and I was pretty sure that I was Inattentive Type. I was also pretty sure that I was fairly mild.

Well, I may be Inattentive, but I'm certainly not mild. I came out severe on all the scales.

To be clear: I have battled depression (including suicidal thoughts) and anxiety (particularly obsessive-compulsive behaviours) all my life. Both of these are likely a result of untreated ADHD. Neither have ever been clinically diagnosed or treated. When I was diagnosed with ADHD, I was well on my way to developing a full-blown anxiety disorder. I was often cut off from my emotions - dissociation is a "wonderful" coping mechanism, let me tell you. It lets you do all kinds of things that you wouldn't do if you were fully integrated.

So, after my diagnosis on February 11, 2005, I started taking Concerta. 36mg every morning. I noticed some immediate benefit: I was on time for work in the morning. I also noticed some not-so-fun side effects: I had bad rebound in the evenings, when my anxiety levels would peak and I would become more obsessive than I was before starting medication. The third night, I was up until after 1 a.m. due to an anxiety attack - racing thoughts, tears, inability to sit still - that wouldn't let me sleep.

After a bit, we moved to 54mg. That was not a fun week. I was emotional - so emotional that I would cry for literally no reason. My anxiety levels didn't just peak, they topped up and overflowed. It was so bad that I didn't take my meds at all that weekend, and I found I was just exhausted all day. I went back to 36mg as soon as I could.

I went off meds completely in July 2005. My reasons were mainly financial, but I also didn't feel that the 36mg dose was doing much for me, and since 54mg was definitely a bad idea, there really wasn't much else for it. It turned out that Janna on meds (even 36mg of Concerta) was very different from Janna off meds, so in August of 2005 I started taking Dexedrine.

I was on 30mg per day of Dexedrine: 20mg in the morning and 10mg at noon (or the other way around, depending). I had dry mouth for a week and got a sore throat and a cough. I had no appetite for nearly a month. For someone who doesn't drink much fluids anyway, and who forgets to eat when she's really really hungry, this wasn't exactly the bestest thing in the world.

But you know what? While I was taking Dexedrine, I learned how to take time out for myself. I learned how to act on plans and start projects. I started to be able to really relax. I re-evaluated my life, my goals, where I was at, and what I was doing, and I started to make some changes.

Then I started having trouble making myself get up and go to bed at night. I wound up sleep-deprived, so my stress & anxiety levels went up pretty high. I talked to my doctor about it, and now I'm on Strattera.

I take 36mg of Strattera every morning. My mood is much more stable, and I'm able to act on plans even better than before. I'm getting to bed early and getting up early - I'm not just on time for work, I'm often early. The dose is likely going to increase over the next few months. Strattera is closely related to SSRIs, and so a higher dose will hopefully continue to lower my anxiety levels and allow me to relax more and more.

My hope is that I will be able to use the medication as a tool, something that will help me focus and learn coping strategies and get various messes that currently exist (most of them financial) sorted out, so that eventually I can stop taking these pills every day and still be able to function as well as ever. But I understand that I may never reach that point. And especially with Strattera, if I am ever going to stop taking it, I will have to wean myself from it with a gradual decrease in dosage.

The thing is, I am an adult. I can make such decisions for myself. I've already lived a life without medication, and so I know what life can be like without these little pills I take every day. Not only that, the medication I am taking has been tested for use in adults, and there is plenty of information about the various side effects that I may or may not experience while taking it.

However, Strattera has not yet been tested for use in children. And so, because of that, no matter how much it has helped me, I would not ask a doctor to prescribe it for my child (assuming here that I had a child, and that that child had been diagnosed with ADHD). Because, too, my goal is to eventually cease taking medication, I would have that same goal for my own child.

You see, I am not sick. I do not take Strattera each day to cure me of my disease.

When I am not on meds, or on the wrong meds, my brain is chaotic. I generate thousands of ideas in a day, and without appropriate medical intervention, most of them are lost. They fall past me faster than raindrops during a storm. Strattera slows them down for me. I can look at them as they go by, and I am able to pluck the good ones out of the air and store them for later.

So many thoughts tumbling by. Catching one is like attempting to pick up a scared guinea pig - you have to corner it to get your hand around it.

Confusion, you see, is the "name of the game". Organization... how do you organize, how do you prioritize the utter randomness of thought?

Thoughts falling,
tumbling past.
Where do I start to gather them in?
How do I keep them from piling up
and overwhelming me?
Drowning in myself...
Sometimes the speed of these thoughts is such that I can't tell what they are.

The Speed of Thought.

March 5, 2006

And that is why my posts are not always coherent to others, why my conversation can seem disjointed. Especially without medication. Tangents are the rule of the game, the law in this land of ADHD. Do not expect orderliness and cohesion. You will be sorely disappointed.