Autonomic Dysfunction and Daily Life

I get a lot of search engine topics relating to how dysautonomia affects daily life.  I’ve decided to write about how it affects me, and why I’m disabled by it.  This in no way is a comprehensive description of autonomic dysfunction- each person has various ways that it impacts them more, as well as different triggers for their symptoms. This is just my situation…

I was diagnosed in 1996 after a tilt-table test (I was strapped to a table, and it was ’tilted’ so my feet weren’t bearing my weight, then monitored to see what my blood pressure did. It dropped to 44/16…. that’s not a typo).  I’d been passing out frequently, and my housemate (also an RN) encouraged me to get checked out. I kept thinking it was ‘just stress’ after returning from eating disorder treatment and trying to get into healthy routines.  Anyway, I had a neurologist who was familiar with dysautonomia, so that was really fortunate. Many doctors I’ve seen (before and since) look at me like I’ve made something up.

The episodes I’d have (when I was still working, and putting more strain on my body) included bright red flushed cheeks, chest blotching, blue tinged lips, and very pale skin everywhere else. Eventually, I’d pass out, and become extremely pale, with very shallow breathing- to the point that one boss thought I was dead.  During the ‘early years’ (in Texas), my employers were more willing to work with me when I had a desk job.  I’d be allowed to lie down, and then resume work when I felt better. When I moved back to Illinois, I was sent out by ambulance when I’d keel over. I’m sure it was to cover their butts, but it annoyed me to no end, and the ER they sent me to was horrible and cruel.  I ended up having to go on disability since I was having so many episodes.

My main triggers are heat and pain, which cause my heart rate to go up and then suddenly drop, and my level of consciousness to go down.  Exercise, or any activity that causes heart rate changes is a no go.  Cleaning my apartment is a SLOW process, and embarrassing that I’m not able to do a better job of it.  Eating hot foods in a ‘normal’ temperature environment causes problems. If I eat very warm food at home (where I keep the temperature around 62-66 degrees year-round), I do fairly well.  But eating away from home isn’t something that is pleasant to think about.

I’m in pain no matter what, which is a problem if I can’t keep it under relatively tolerable control.  I start passing out if it gets worse.  I have fibromyalgia and chronic headaches, and recently have had problems with my left shoulder muscles ‘pulling’ to the point that I can’t really use my left arm for a day or so until it gets back together.  I have to avoid anything that increases pain.  Laundry, emptying the dishwasher, taking out the trash, and things like that have to be paced.  When I do my main monthly shopping, I’m done for the rest of the day. It’s very painful.  I get many things shipped to my home, which helps with some bulkier items.  I live alone, and while my dad would help with as much as he can, I still want to do what I am able to do. I just have to be careful.

Being in environments away from home is extremely risky, and I have to wear an ice vest to avoid being overheated. I’m also waiting for an ice bandana, and have shaved off most of my hair, since my head just gets too hot.  I can’t tolerate doctor’s office waiting rooms, friends’/family’s homes, church, or just about any place that isn’t less than 66 degrees at all times.

Over the last couple of years, it seems as though the dysautonomia is getting worse. I have to be more careful about activities, pain, and temperature.  I don’t know if that has to do with the chemo I had for leukemia, or if it’s just the nature of the disorder. At any rate, I’m having to make more adjustments.  And, I’m having to let people help me more with getting my apartment straightened out.  I hate needing help (but I’m thankful for it).

That’s just an example of what things are like for me…

Eating Disorders and Suicide

This time of year stirs up memories of my first year at the University of Illinois (Champaign-Urbana campus).  I’d arrived there with anorexia well entrenched, after losing 45 pounds in about 6 weeks while working at a church summer camp as  a nature counselor.  I didn’t want to get to college ‘fat’.  And I didn’t (though I thought I was grotesquely huge), but I was already a slave to the eating disorder (ED) voice in my head that made eating absolute hell.  People who haven’t crossed the line to an actual eating disorder don’t get it. I don’t expect them to- and I’m thankful they don’t know what it’s like to have a war in their heads over the number of curds of cottage cheese that are ‘acceptable’.  Yeah- it gets pretty weird.

By the beginning of the Spring semester, and returning from Christmas break, I was a mess. Being home for the holidays had been very difficult- I’d done what I could to avoid being around family by working at the University during a missions conference (‘Urbana ’81’).  Ironically, I worked in the food service area. But I had to be at home at some point (and in Florida with my parents for Christmas itself- that was a battle I lost).  Trying to hide an active eating disorder and starving/purging isn’t easy- and caused even more havoc in my mind.  I didn’t return to school at all well.  I’ve never been clinically depressed unless I’ve been starving/malnourished.  And I was a mess when I got back to my dorm.

I’d been seeing a therapist since I had arrived on campus the fall of 1981, as my resident director, resident assistant, and dorm-mates had found me wearing 6 pairs of socks and a winter coat in late August in central Illinois… humidity with the heat was probably stifling- but I was freezing.  The RD could actually feel the cold coming through the socks. SO she called 911 and I was hauled off. I was diagnosed with anorexia nervosa the next morning, and ‘ordered’ to start therapy or leave school.  I had no clue what to think about therapy, but I knew that going home wasn’t an option. It would mean I’d failed.  SO I went to therapy.

That therapist ( a very nice youngish woman) probably never heard me say much more than “I don’t know”- and I didn’t !  I had absolutely no insight, and no clue what could have gone on in my past to lead to the eating disorder.  By the Spring semester of 1982, I was really falling apart, and had a plan to kill myself.  My roommate had moved out long before (because I was too QUIET !!), so I could be isolated for quite a while before anybody would have noticed I’d been missing.  I had planned to take the tranquilizers (Thorazine- supposed to chill me out enough that I didn’t care if I ate) I’d been given at the university health system pharmacy,  and lock myself in my room, IN my closet (with the keys), and just wait.   I’d become fairly resigned to the idea that I wasn’t going to  live all that long with the anorexia (which had included periodic bingeing at that point, and daily purging via 40 laxatives spread out throughout the day), so it was more about just dealing with the inevitable.  I didn’t really want to die– I just didn’t know how to get out of the ED.  I felt trapped, overwhelmed, ashamed, and hopeless.

The emotional pain had hit the tipping point.  For some reason (like wanting to live maybe?), I spilled my guts to my therapist, who promptly had me escorted to the university health system (via the University Fire Department….. subtle), where I stayed until arrangements could be made to have me shipped to Forest Hospital in Des Plaines, IL.   It was a nut house.  Back then, there were no eating disorder ‘treatment centers’… if you had a nutty problem, you went to the nut house. That in and of itself was terrifying, but I was even more afraid of facing my parents- and being a disappointment- so a longtime adult friend and her daughter (former babysitter) came to get me…once the blizzard passed, some 3-4 days later.  The therapist and health center folks had wanted me out of there much sooner, but the weather was a big problem.  So, I waited at the health center ‘hospital’ as dorm friends came and went, both trying to cheer me up and also to say goodbye.

Suicide  attempt averted. That time. The next fall, I returned to the university, and the pressure build-up was almost instantaneous.  More on that later….