Saturday, September 20, 2008

Getting better, or going crazy?

Back to: All better now? Um, no

December 2007

Well, the end of November left us with a pretty dismal outlook. And to top it off, my short-term disability had run out, and there was a waiting period before long-term would start covering. And I remember one of my doctors warning me at that time that trying to get long-term disability was difficult - implying that you had to be much more sick than I was. Implying that I should just "get over it".

So, I decided to go back to work part-time, working from home. After the second or third day I knew it wasn't going to work, but I was afraid to admit it to myself and others. Due to the effort to concentrate and think about complex projects at work, my head was spinning. Ears ringing loudly, constantly. Fadey episodes every day. All day long being half-faded, which is sort of like being drunk.

I was able to limp it along for a couple of weeks, but then I finally gave up and told my employer and doctors, and insurance company that I needed to go on full-time disability. I remember thinking even then, that I'd know when I was ready, and it'd probably be a month or so. Wrong.

I remember latching onto anything positive, rationalizing that I was getting better. Hey, I was just following doctor's orders. I was real sick, and none of my doctors would treat me, and they all thought it was in my head at this point. So I just kept thinking that perhaps the first ID doc was right. Even though I didn't like his attitude, perhaps I do just have to wait, and if so, it makes no sense to thrash around wasting money I don't have, and ruining my quality of life to try and fix something that can't be fixed. Right? Does this make any sense?

Then I remember Christmas. Now the holidays are always a little stressful. No problem. My wife, our sons, and I went to my father's house to celebrate and have dinner. My father has a very loud household - it's just the way they are. Not my cup of tea, but I tolerate it. Usually. This time, I can literally feel my brains leaving me within 1 minute of walking in the door. I'm smiling stiffly, trying frantically to hold it together. My wife, who is always watching me these days, notices. She says quietly "are you alright?" It's all I can do to give my head a tiny nod in the negative. I can't speak at all. Can hardly move.

I end up spending Christmas upstairs, sitting in a chair staring at the wall, kind of scared, crying occasionally. OK, I guess really scared. And wanting my life back.

January 2008

I started writing this post with a title of "Minor improvement". But as I got into it, I realized there wasn't any.

Usually every January a few fathers and sons of our old Boy Scout Troop go and stay in a cabin in New Hampshire for a weekend, and ski, snowboard, or just drink a couple of beers in the lounge. The boys are all grown, but we can usually all still find the time, and it's great fun. This year my son wasn't around, as he'd gone down to North Carolina to hang out with some friends from college. I really wanted to go, but I didn't, realizing that I couldn't handle the trip in the car, even though my friends had offered to drive me. And it would be too many people, too much input. But it made me feel sad to miss it.

Not too much "medical" happened in January, since I was "waiting to get better". By now, I was kind of bored, but I could hardly read anything, and I didn't feel it was safe to drive, unless for a very short distance to walk my dog. Fortunately I have a bulldog. Among other endearing traits, he only needs a small walk each day to feel happy. I could barely handle that, and then come home and collapse.

I had to see my GP to have him fill out the form so I could get disability. This is the doc that I first went to for a second opinion after I got lyme. This was one of the only doctor visits I went to on my own. I think my wife was working, and I probably said I could handle it, which of course was over-ambitious. I was a bit faded by the time I got to the office. Then, and I can't figure out if it's his nature, or if he was testing me, but the doc proceeded to obstinately argue with me. Which caused stress, and a quick spiral down into hardly being able to put two words together.

I really only came so he could fill out the form, as my biggest stressor at this point is having no income. He's telling me that he doesn't see that I'm doing that poorly. I'm shocked. I get fairly intense as I ask him if he can't see that I can hardly think, or speak!? And he then says, sure, but he didn't know me before I had lyme, so as far as he knows this could be my normal state.

This must be a bad dream, and could I please wake up?

He signed the damn form, I got disability, and I never go to this doctor alone. In fact I avoid him if at all possible. But he mentioned that I should see another neurologist, and undergo a neuropsych exam. When he does allow that I may be sick, he constantly looks for anything else but lyme, because he believes that there's no way lyme could be causing all of this. He thinks I either have alzheimer's or it's psychosomatic.

February 2008

I remember two significant things that happened in February. We had a very stressful family situation to resolve, which involved traveling to Virginia for a few days. We stayed in a motel, and I remember not even being able to go into a restaurant, because of the light, sound and smells (yes, I have also become super-sensitive to smells - I could be a drug-sniffing dog). So I just waited in the room and my wife would go next door and get take-out.

The other thing was that I had the neuropsych test. It involves several hours of questions, some verbal, some multiple choice on a computer. The multiple choice questions gave me an uncomfortable feeling, as if I was being herded. For example, "When I get upset I am most likely to: a) harm myself, or b) harm others." That's it. There's no "c" choice. I think there were over 500 of these little things.

The expert's interpretation of the test was that I don't have alzheimer's. Good, we knew that. And that I am very high functioning, and there seems to be nothing wrong with me, except that I'm a hypochondriac with all these psychosomatic conditions. That there is obviously a history of long-standing psychological problems. The doctor recommended anti-depressants.

Nope, not a bad dream. So now I have to convince people that I really used to be normal. But how?

I resisted the idea of anti-depressants. I'd heard many bad things about them, and that it took lots of tinkering to get the right drug, and the correct dosage. I didn't like the idea of these doctors poking blindly, hoping something would work. And for what? No one could explain to me how it was going to address the lyme. At most, it would cover some symptoms. Everyone was telling me I was depressed. I guess so, a bit. But not severely. I didn't think of death, or stuff like that. I wasn't sure, but I was still hoping, cautiously optimistic, that I was getting better, albeit it at a glacial pace.

Next up: Eventually a new direction