VENT: How are you doing? (Honestly)

I'm doing much better since going on Disability. My treatment with XYREM helped enormously but it just wasn't enough to let me continue teaching, or even working at Sam's Club as a cashier. It was hard to stop working but it has been a huge relief. I'm only in my early 60's but life is finally not a chore. I can live at a pace that works for me. But I struggle financially and am finding that very hard at this time of life.

Did you ever have flying dreams as a child. I was taking flying lessons in my dreams. I was clumsy initially but over the years I improved. At the beach one year on Lake Huron I watched five young eagles learning to fly and soar. I could relate to their awkwardness. It was so cool to watch them. They inched out over the water so carefully. I felt honored, as John Prine said in The Accident, just being part of that scene. Two cars collided and I got excited just being part of that scene. What gifts there are to admire if you slow waaaay down. Yes write. But definitely draw. I draw. Always have. For myself. But I'm not half bad. My drawings tend to be faces but they come out of my imagination. I've taken art classes but the students in painting classes were too snooty with their expensive art supplies. Rich old ladies. Some were nice. They'd go on and on about archival quality paper and scold me. As if their works were worth saving for decades. Funny because I have all my old drawings. And any classics I read. I took two terms of existentialism in college. My next ambitious book is Don Quixote and why didn't someone tell me earlier how irreverent and funny it is? I've been cheated.

Oh the dreams are the best except for nightmares. Or the kind where you dreamed that you took out the garbage to the curb and you are content that you got the garbage out in time and don't have to haul them out. But you look out the window and the garbage truck is pulling up and there are no bags or cans in front of your house.
Or the sleep hygiene autocrats advise you, if you've only slept 3 hours, under no circumstances get out of bed. Don't use blue screens. Don't watch TV. So I'm awake for three hours and get a great deal done anyway. But housework nope. Most cerebral stuff. Learning geology. Ask the right question and there's an answer. Once upon a time Michigan was under salt water. And the equator passed through. When well diggers dig through bedrock they hit horrible tasting brackish water. Not good at all. But Dow chemical was formed taking advantage of that awful water. All those chemicals plus salt. Lots of salt I try to learn stuff that I have no possible use for. But not always. Why at 3 am do I remember that the symbol for current is I. Everyone now uses A. And then I looked up what I stands. It's a phrase in French which I easily understood. But why did I immediately remember Watts equals voltage x current and current is upper case I. Not A. But dreams are extraordinary.. They haven't abandoned me despite drugs.

I tried a THC gummi meant for sleep. Twice two different ones. Kept me awake and didn't do good things for me. I mean racing thoughts in-between a bizarre dream state and being fully awake and I annoyed that I could focus my thoughts and just read a good novel. I spent formative years in Ann Arbor. Couldn't stand it then either. My husband however smokes pot and he cleans the entire house. While playing all our old Grateful Dead albums. And he wants to talk. And talk. And talk. Suddenly he tells me I'm a great artist after all. I leave to go read. I need that three hours of sleep first. Then I'm awake. Not practicing sleep hygiene with ever fiber of my body. But my brain is happy. No brain fog whatsoever. On a dose of Xywav. And Seroquel. That's my magic time. I'm the furthest thing from a lady with dementia you can possibly imagine. I get a lot done then. I'm meticulous about details. I jump ahead. I remember names of people. Situations when I was a little girl. Ask my mother later and she tells me that it's impossible that I remember these events. My grandparents in South Chicago. Where I remember the Beatles came to town. The 1972 Democratic convention. Going to a bar with my Opa after his shift as a millwright at US steel. I had orange juice. He had a schnapps and a beer. He smoked camels. My father smoked switched to Kents because they had filters. They only spoke German. All these memories visit me and they are not dreams. But I allow them to come. The boy on my school bus who went to my private school. He spoke Yiddish to his family and while we sat listening to Motown from CKLW the radio station in Windsor we compared words in German with the same word in Yiddish. His name was Ezra. I remember that as well. If this is a by product of narcolepsy I'm actually quite pleased about it. I watch my husband who is 70 play fill in the gaps with his memories. Sometimes it annoys me because if it's a bad memory where he is evading taking responsibility for abusive behavior he fills in the gap in order to make me the villain. The instigator.

But check your memory banks. You don't know what you can retrieve. Maybe this is not from narcolepsy but why shouldn't it be a result somehow? Stuff perhaps gets hard wired in our brains better. Those dreams might have been good for something after all. The mortar those stubborn bricks of scattered experiences needed in order to remain fast in place. Orderly bricks. Nice strong structure. Believe me I've never thought about this much really. Not as a concept. A very profound difference in my brain from my husband's or my mother's . Although at 92 she's back to being sharp again. After a slight slip due to health issues. They've resolved and she's back to normal. Let me know.

Oh dear. I fully understand. I liked the psychiatrist who caught onto my narcolepsy despite the fact that she was treating my for manic depression. The day I told her that my naps were interesting because I'd immediately start dreaming. Could solve fluid mechanics problems in grad school in my nap. She didn't ask me what I was dreaming. She sent for my first sleep test. I had a second one when I switched to Henry Ford sleep center. Saw a board certified neurologist,psychiatrist certification,and generally nicest sleep specialist ever. " You mean I never need another sleep test" Nope. So manic depression was bad for ten years and it went into remission. For real. It happens. Just take a maintenance drug. But I'm from an emotional standpoint less anxious less depressed less prone to panic disorders than anyone I know. But I did retire at age 40 and received SSDI A pension. And sickness& accident pay. But as the manic depression faded narcolepsy took its place. And in many respects has been more disabling. Cataplexy. Hitting my hitting from that too many times. Never being able to predict my abilities. I would have been fired from a fast food window the first week. I was a mechanical engineer with a PhD in it from Michigan. I'm very grateful that I told my boss about bipolar because he was ready to fire me. The lawyers stepped in. She did what? She told you and gave you a book to read all about it? Are you insane. That's how I became a lucky woman indeed. But it's been darn I couldn't work at age 50 if I wanted to because narcolepsy beat me. Occupation wise. I couldn't earn one dollar or the corporation would wipe out my disability payments. That was the deal. Until age 65. But I am grateful because it was unusual to get disability pension for anything psychological and back then narcolepsy was even trickier even though it's neurological. Purely. Now it's easier but still so poorly understood it makes me angry. My physicians look at my chart and hone in on bipolar. I owe them a letter because my problem with my brain is not mood swings it's narcolepsy. It affects me greatly. I have hypertension. Odd since I'm not overweight and I'm active. Now it's under control. I'm lucky because Wellcare is my part D and they approved in one afternoon both Modafinil and Xywav. When the friendly attendant began to suggest I try yoga for hypertension I laughed myself silly. My back is fused from L2-S2. Yoga is not my friend anymore and I have a BMI of 19.3. Salt is bad. And now I sleep 5 hours tops except that I take a biologic for Prurigo Nodularis and dermatitis and the stuff gives me insomnia. Great. It's always something new. And with me I wait it out until I end up in the ER and in surgery. It's almost funny. But doctors still don't understand what a single day with narcolepsy is like to experience. Sleep hygiene they preach. Will that prevent from the occassional sleep attack where I tend to fall off the toilet when an insurance company (CVS ) makes me beg for Modafinil. After I've woken up gotten dressed had coffee boom. No longer fall down basement stairs from cataplexy. And I continue to wonder about connections between weird things. I did get pancreatitis from Depakote a complete accidental finding. But only this morning did I find out that Depakote slows down Xyrem. In a sense increases its impact. Could that be why I just wrote my neurologist asking if my fractured sleep at night might warrant and increase in my xywav dosage? I'm not at the maximum of 9 grams so it's cool. But doctors don't understand except one dude an anesthesiologist, right before revision spine surgery. was utterly fascinated by the whole topic. The first doctor who confessed he didn't truly understand what it's like and he asked very very good questions. Better than my family ever has in years. They do tend to think it's laziness. An excuse. Or think I'm covering up for clinical depression. When I was actively mentally ill I was only depressed once for any length of time. That's when I first received treatment. The psychiatrist didn't realize I was far more likely to become manic and impulsive. I dumped him but only after I started lithium. There was a gap in treatment and boing. Mania. Restraints But now narcolepsy is still its dogged annoyance. Daily. Cumulative. I saw an insomnia CBT therapist. We agreed that I was doing my best and therapy would be largely a waste for both of us. I see a new psychiatrist via video for 15 minutes every six months. I take one psychotropic drug. That's it. I have migraines but the neurologist prescribed a hypertension drug that brought my blood pressure down too. With the approval of my cardiologist. Don't these people know these things it's not rocket science since I'm not an MD. Why am I constantly figuring stuff out. I put narcolepsy on the back burner but now that the research is becoming interesting again I'm curious again. All this comorbidity is fascinating in a grotesque way. And narcolepsy or rather the autoimmune overkill didn't give me an illness that will kill me but it's so chronic. Always my pal. It's like a curse. If it turned skin purple and lime green maybe then the physicians who treat me might notice that little tidbit in my chart. Or if it only turned purple and lime green when I was 5 minutes away from a sleep attack that would be awesome. I'd avoid slate and tile floors. I always drive cars with manual transmissions because it requires more motor activity. More thinking. Never set cruise control in my life and I've never fallen asleep. But some days my motivation simply isn't there. A deadline gets my adrenaline going which is good for productivity. But people, even families don't get it. I'd like to have purple and lime green stripes when my brain is sluggish. I'm running late. At 3am I'm remarkably astute. Later sometimes I can't function nearly as well. I want to paint more. Play piano more. Garden more. I do better when I read and turn off the television. Better when I have a question and snoop out the answer to it. Yes. At 3 am. After my first 3 hours of sleep. I'm refreshed then. What kind of weird stuff goes on in my brain that I'm so cognitively alive then? Well obviously 8 hours of sleep are not my privilege. Sleep hygiene for me? What's good sleep hygiene for a person with narcolepsy with cataplexy ? That's a ridiculous question. If I had some internal regulator that worked properly iny brain I wouldn't try to override it. Pull all nighters. Or sleep to excess. My brain doesn't have the normal kind of automatic control feedback loop that my husband does. Or my two German Shepherds do. And it's changed over time. And the researchers are chipping at it.
But to you I'd point out that it's a disability. Not a condition. Not psychological. I'm glad you found a neurologist. NORD was helpful in giving me a grant for drugs. Their information is solid. Now I've got two rare diseases. Prurigo Nodularis and narcolepsy. I don't if they are in any way related. But the skin condition is autoimmune. Who knows. They hadn't yet mapped the human genome yet back then. Who asks these questions. But your family needs to understand that while narcolepsy isn't like Lou Gehrig's disease which presents as a death sentence in nearly all cases so far. Nor like Alheimer's disease. But it's just bad enough that doing everything that everyone does automatically without thinking can be tremendously overwhelming sometimes. Plus there's the same kind of stigma people with epilepsy used to cope with. My mother-in-law had epilepsy. Worked as a librarian even with 4 children. She had her first seizure giving birth to my husband. Her husband hustled himself into the army as a chaplain at record speed. Retired a colonel and taught at the war college. She had a slowing growing tumor in her right temporal lobe which was partially excised at Walter Reed. In one of the pioneering surgeries of its kind. So people have stuff happen and teaching tolerance is extremely important to me. You aren't lazy. You aren't fat on purpose. It comes with narcolepsy. To accomplish something you have to push yourself much harder than the next person even if you are twice as clever. That I know as I grow older is true. Very true. Of course that anesthesiologist is in the business of putting people into an unconscious state. But he has to cater to the occassion. Very tricky indeed. So his fascination with narcolepsy was understandable. Smart man. Good doctor. To take the time to learn something new from the perspective of a patient. Wanting to know what it felt like really. Asked exactly the right questions. One after another and realized that it's unusual. A different reality through my eyes. With drugs. Without drugs. If only all doctors took the time to learn. It's not that rare but it's not flashy either. But you are doing your best. You're frustrated. I am too. Sometimes. Not all the time but too often. I like being well. I don't like concussions. Etc. I excell at recovery. But darn. It's getting old. I can do without the close calls. So laugh when you can. You have just as much self discipline as you can handle. Don't beat yourself. You aren't a freak. You're different though. And it's a difference that sounds peculiar to someone lacking imagination. And then folks come up with all the ways you're a danger. Yes you can drive. You are smart enough to know when you're tired. So many people drive tired and cause accidents. My husband did learn from me to pull off the road and take a brief when he's tired. It's like being drunk. But nobody cares too much. They are fools. I do care. Very much so. Having worked for a car company plus having a 92 year old mother with a shot optic nerve in her left eye due to glaucoma and didn't know there were side view mirrors on her car taught about bad drivers. Truckers don't use rear view mirrors. Why is that? And they get their peripheral vision tested.