The Social Implications of Dysautonomia

It’s so embarrassing to have physical reactions to relatively non-threatening stimuli.  My autonomic system has a very itchy trigger, and I have to limit what I expose myself to in order to avoid a considerable fight or flight reaction.  I can tell myself all day long that a situation isn’t any big deal, but if I get a ‘startle’ response, it’s out of my hands.  This can include something as stupid as reading something highly critical and ‘attacking’.  In my head, I know it’s no big deal- my heart rate doesn’t agree.  SO, I have to put walls up.  It doesn’t matter if it’s a stranger, friend, or family member – if they are ‘high risks’ for triggering a startle response, I can’t be around them or interact with them in any way.  Most of the time that’s no loss… but sometimes, I do miss the person.

Imagine how you get that ‘heart stop’ feeling when you’re startled suddenly and intensely.  That’s what it feels like, but it won’t stop.  If I can’t get the changes in heart rate stable, I end up having to deal with how to avoid passing out.  That becomes a safety issue- not just something unpleasant.

It’s embarrassing, and I’ve never really explained it to people, as I anticipate dismissive comments telling me to just get a grip and stop being a wuss.  I wish it were so easy.  The biggest part of my social isolation is related to temperature issues and having to stand for very long.  Pain is also a problem.  But the ‘simple’ interactions, and God forbid, disagreement (which intellectually, I have no problem with) can lead to some nasty hours of trying to get things back to my usual state of decrepit.  SO I isolate.  It’s not like I can wear a list of instructions on a t-shirt telling people to just be civilized around me.

Most of my interaction with people is online- and that is no less a problem. In some ways it’s worse, since people don’t censor themselves into respectful conversation… they just say what they want with no concern about being decent.  I know that nothing will improve with that anytime soon- if ever.  People are just rude and hateful.  SO, I ‘ban’ myself from most interaction, and block people when needed.   I don’t like it, but I have to be on constant guard, to protect myself from as much ‘startle’ as possible.

The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !

But You Look OK….

Dysautonomia doesn’t ‘look sick’ when the symptoms aren’t present.  It only looks sick when the symptoms kick in, and that can happen just about any time for me.  My specific triggers are heat, pain, and fatigue.  I can’t leave home without an ice vest (about 5 pounds of ‘synthetic ice’ in four inserts that fit into a vest).  If I get overheated, even with the vest, the chances of my blood pressure and/or heart rate going bonkers is pretty good.

From the outside, it doesn’t look like anything is wrong with me.  But there isn’t any part of my life that isn’t affected.  My activity tolerance, even for basic household chores, is lousy.  I get things done, but it takes a  lot longer than it used to.  No matter where I go, I have to have a contingency plan in the event I start to feel like I’m going to lose consciousness.  I do have some warning, but if I’m away from home, the only thing I want to do is GET home.  I don’t want people around me when symptoms kick in.

Dysautonomia is a disorder of the autonomic nervous system.  It’s the stuff that is either reflex or not within my ability to  consciously  control.  Something goes haywire when I am up for too long, get overheated, or my chronic pain isn’t adequately controlled, and I simply pass out.  My body doesn’t compensate for the low blood pressure properly.  Or, I get a rapid heart rate that sometimes includes abnormal heartbeats and rhythms.

It’s frustrating when people don’t understand that I am not avoiding contact  just for the heck of it.   I would love to be able to do more.  I know my limitations.  I know when I can or can’t do something.   Every single day my ability to do things is affected.  Going anywhere is risky because of the temperature.  It may feel fine to others, but for my body it’s too warm.  Even in the winter I have to wear the ice vest.  When I do my once a month trip to the grocery store I have to wear the ice vest and remove my coat immediately when I get inside.  Usually I go in the middle of the night because there are fewer impatient people, and it’s cooler.

Making a sandwich or emptying the dishwasher is really painful.  I still have to do those things but I also have to rest afterwards.  Laundry is painful.  But it gets done.   I’m not feeling sorry for myself- it’s just the simple truth.  So I am responsible for avoiding things that make it worse, or could trigger completely losing consciousness.  That’s my ‘job’ since I can’t work.  I have to make my life as decent as possible without taking unnecessary risks.  Risks to me are simple things to most people.

I know I look fine.  But please don’t judge me for that when I say I can’t do something.  I’m thankful that I’m not any worse, though the dysautonomia seems to be progressing.  I still have a lot to be thankful for; I still live by myself, and get things done, even if slowly.  For those who haven’t seen what happens, please don’t assume I’m just being weird.

Outward appearance seldom tells the complete story about anybody.

 

Diss Auto Gnome Ee Ya….. So there !

Dysautonomia.  Fancy word that means my autonomic nervous system (‘automatic’ functions; nothing that is controlled by me) is whacked.  I was formally diagnosed in 1996 when I flunked a tilt table test. My blood pressure tanked to 44/16, and I was still not totally unconscious. The doc told me that when I completely passed out (which had led me to the testing) my heart may have just taken a break for a second or two, and the thud on the floor jumpstarted me again…scary thought).

My blood pressure, heart rate, respiratory rate, and temperature regulation are all messed up. Pain and  being overheated are the biggest triggers, although having anything get the ‘fight or flight’ response going makes it go weird.  I’m not much fun when that happens.  Tipping over got me put on disability, which was (and is) the pits. I miss being a  working nurse (I keep my license active; I earned it, and it’s mine!).  I do not like being a patient (and I’m not that good at it, in spite of a fair amount of experience).  I tend to take care of any nursing ‘jobs’ I can when I’m a patient, and the nurses aren’t always that thrilled. I’ve gotten better about that…sorta.

Nobody is for sure what has caused this.  Some types of this disorder go along with other diseases, like Parkinsons or multiple sclerosis. Sometimes head injured patients have ‘brain stem storms’ which are similar, but those are generally confined to those with serious, life altering brain injuries.  Autonomic dysreflexia is similar. Diabetics can get autonomic neuropathy and have similar symptoms. Sometimes nobody knows.  Sometimes it progresses until the person dies (Johnny Cash), and sometimes it just sort of coasts along.  It looks weird regardless.

I was living with a co-worker in a house with no central air conditioning (in Texas) and hardwood floors when I started having symptoms that were enough to be noticably abnormal (i.e. passing out and hitting said floors about 10 times in two weeks). I had a bedroom window AC unit, but during the day, it was box fans or bust. In July.  I initially blew them off as ‘stress’. My co-worker (another RN) told me there was nothing ‘stress’ about what was going on- I had something physically  wrong, and needed to get it diagnosed and treated before I ended up getting really hurt.  Up until then, I bounced fairly well, and aside from some bruises and a concussion, I would just wake up on the floor, usually with my co-worker sitting on the floor next to me after being awakened in her room down the hall from my body whacking the floor.  She said I looked like someone was beating me, and since she was the only person around me on a consistent basis, it didn’t look good for her !!

So, off to the neurologist, who did some tests, and then to an electrophysiologist in San Antonio (60 miles from home, where I’d drive myself back and forth for the consults with a cardiologist, another neurologist, and the electrophysiologist…. basically they were looking for heart rhythm and brain abnormalities).   The electrophysiologist figured out the problem with passing out, and my neurologist back where I lived figured out some medications to help me keep working. Things had been pretty dicey with that, and my boss was ready to cut me loose. I was horrified.  I was tested for all sorts of things, but dysautonomia was the official word.  There are various types, and I seemed to have a mixed bag with neurocardiogenic syncope (I keel over if my blood vessels in my legs dilate and suck the blood from my brain (more  or less) , causing me to pass out), and some orthostatic tachycardia issues (POTS for the informed) where my heart rate goes up abnormally when I stand upright for too long.  Then there’s the strange stuff with heat that makes my blood vessels swell, and there’s no compensation with my heart rate, and I eventually keel over, after a very patriotic display of bright red cheeks, white around my mouth, and  bluish lips. If I don’t get it controlled at that point, I’m out for the day. It’s all quite exhausting.

It’s weird.  It’s misunderstood, and it’s taken my main sense of purpose – working as a registered nurse. I have been an RN for 27 years, and miss it terribly.  In some ways, it’s been good I’ve got that license to make sense of my own stuff.  But since 2004, I haven’t been able to work, and I do well to get the basic things dealt with at home. Laundry and cooking are quite painful, so it all gets done in ‘batches’.  But, it could be worse. I’m not in some retirement home.

At my last job, I was shipped to the ER between 10-12 times in the last 6 weeks or so that I worked there. Finally enough was enough (and the ER they sent me to was really snarky; if they didn’t understand it, it must not exist, so I was treated like the dreaded frequent flyer – even though I hadn’t sent myself there, my boss had. They were  very cruel at times).  My primary doc agreed that work wasn’t working. There was no way to know when I’d be more prone to having the episodes happen, and since I was (and am) in constant pain, there was always that trigger waiting to blow up.  If the thermostat was comfortable for everyone else, chances are I’d be burning up.  I now have an ice vest that I wear to leave home on the days I have MD appointments, or the one day a month I do major grocery shopping, which finishes me off for the rest of the day because of the pain that causes.

But I’m still relatively independent. That’s important to me. Even when I was getting chemo for leukemia, I’d drive myself to the chemo appointments and Neupogen/Neulasta shots. I wanted to do it on my own.  I’ve had to call my dad for enough stuff, that if I can take care of something, I prefer to do so (he would help in  a second if I asked him).  I rarely drive (have killed two batteries for lack of use), and know if it’s not a good day to go.  I shop in the middle of the night, so it’s cooler. I’ve had to make some adjustments, but that’s OK.

Anyway, if you see someone who has weird symptoms, encourage them to get help.  I got another 8 years of work from the right medications. That is priceless.  Don’t assume that just because you don’t understand it, it must not exist.  Too many people do that.  That can be dangerous.