Another Season of Dysautonomia

It’s so frustrating to be at home watching a movie, and begin to feel the familiar feeling of one side of my face being on fire, my heart rate being erratic, and then the general ‘unwell’ feeling.  I’m at home !  I’m in charge of the thermostat (at 64 degrees).  I’m not moving around when watching the movie.  The film (‘Flight’ – great film about addiction- NOT primarily an airplane suspense film) had to be the trigger.  The autonomic reactions to the various ‘adrenaline’ kicks in the film set me off… and there’s nothing I can do about it now.  A quick glance in the mirror to confirm that the left side of my face is nearly purple-red, while the right side stayed the ‘Midwest winter pale’, and I know what’s going on. The dysautonomia is acting up. Again.  But, I’m not going to stop watching movies or just ‘living’.

In the beginning of the dysautonomia, medication bought me eight years of manageable and employable life.  It took some time to get the right ‘cocktail’ of beta blocker, anticonvulsants, and benzodiazepine, but they worked. It was great! That was a long time ago. But the last few years I worked were pretty dang good.  I’d have occasional ‘spells’, and they were annoying- but my ‘good days’ far outnumbered my ‘bad days’.  I’ve been disabled for nearly 9 years now.  And things have been getting progressively worse.

I’ve had to shave my head to eliminate the source of heat from having thick hair. I’m not kidding. I get the #1 blade on the clippers at the hair cutting place.  The next move is to go to a barber for a straight razor shave.  Losing the hair has helped somewhat, but I’ve got to face facts. I’m getting worse.  I’ve talked about the ice vest before- and it has been extremely helpful.  Without it, there are MD offices that I couldn’t tolerate; their thermostats are set for tropical birds, not humans, in my thermo-biased opinion.  My next option was to be calling ahead to see how things were running as far as delay time in the waiting room, and then sitting in my car in the parking lot (with the AC on), and have the receptionist call me on my cell phone when it was actually time to see the doctor.  The ice vest has helped with that.  I’ve also got ice ‘bandanas’ – one type has actual ice packs in it, and the other is essentially  getting a bandana wet and letting it evaporate.  The ice pack ones do help, but don’t last long, so I have to keep changing out the ice inserts.  I haven’t tried the evaporation one yet… it is visually unimpressive.

People think that winter would be easier. Well, if people didn’t turn their heat on, it’d be wonderful !  But ironically, it’s worse.  I can’t depend on different places keeping the temperatures the same, so it’s a crapshoot as far as how I’ll tolerate being indoors away from home from one place to the next.  I wear the lightest weight coat possible, and remove it immediately when I get somewhere. The ice vest is with me unless I’m going to be in the car the whole time.  I’m only away from home for more than an hour about once a month, to do my main grocery shopping when I get my check.  That finishes me off for the day.  If I’m going somewhere for more than 2-3 hours (once or twice a year- usually Christmas, and maybe one other time), I have to pack the extra bag of ice vest inserts, the cooling ‘reusable dry ice’ packs to keep the inserts activated, and the ice bandana refills. It weighs about 25 pounds or so when it’s fully packed, which then requires the rolling walker since I can’t maintain my balance carrying the ice ‘chest’ and my purse.  Then there are the ‘as needed’ medications to regulate my heart rate and/or blood pressure, water to take meds and stay hydrated, stuff for blood sugar (glucose source and insulin), other diabetic supplies and meters, and my battery operated hand held fan with extra batteries.   Nothing is simple.

I recently found out that the ice vest inserts aren’t allowed in airplane cabins, since they are actually liquid when they ‘thaw’.  The company had enough experience with various airlines to know the TSA issues. I’d need the full pack for pre-boarding time in the terminal, as well as any time in the air. I didn’t have anywhere I needed to be; I just wanted to know the options.  Flying isn’t one of them.

When I’m at home, I can maintain the temperature fairly well, unless my autonomic system is given a swift kick from something I see in a movie, on TV, or even read online. If ‘fight or flight’ is triggered, I’m going to have problems with my heart rate. If I don’t get that under control fast enough, my blood pressure will tank, and I’ll pass out.  It’s a slow dance with everyday life.  And no two days are the same. Triggers are similar, and there is some consistency- but if I’m also tired and/or in pain, stuff gets dicey faster.

But I’m fortunate.  I’m in a safe apartment, and I’m still able to live independently.  I’m not the best housekeeper in the world, since any activity affects heart rate, but I’m slowly getting some things done that had been mucked up by the fatigue of chemotherapy (for leukemia; I’m in remission).  A friend is helping me get stuff taken out of here that I want to donate to a thrift store (and get OUT of my space), and that’s helping a lot.  I’m working on some sort of ‘paced’ vacuuming and dusting.  I’ve got a network of cobwebs that look like miniature ziplines going from corners of rooms to bookcases. I wonder what travels on them…. eek !

So, another season means shifting how I do things and getting used to another aspect of dysautonomia as things get less stable.  Something else becomes another thing to work around. There’s another cooling gizmo to try.  And a list to take to the neurologist for the next visit, to see if more medication adjustments are needed (not fun).  In the twenty years I worked as an RN, I never heard of dysautonomia. I’d heard of autonomic dysreflexia (which is a type of dysautonomia), but nothing along the lines of POTS, neurocardiogenic syncope, or other forms.  Whatever it takes to stay conscious and out of the ER and/or hospital is worth trying. Staying educated is extremely important since most ER docs and nurses aren’t all that familiar with the forms of dysautonomia, if they’ve heard of it at all.

I miss my old life. I miss being a working RN. I keep my license active and do my CEUs for license renewal; I don’t  ever want to have to say I was an RN…. I am an RN.  I just have to keep myself from totally falling apart as best as I can.  With changes in how my body functions, and different medications I’m on, I have to stay fairly up to date with drug interactions and functional adaptive equipment.  I miss being useful.  But, I have to focus on what still works.  I also am thankful that I’ve got the ability to blog, and meet others who, unfortunately, know exactly what I’m talking about when I describe something.

 

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4 thoughts on “Another Season of Dysautonomia

  1. Thank you for sharing your challenges. I admire how you keep it up and manage despite all the difficulties. Hope they find a cure soon.
    And I think you are still being useful, sharing this on a blog and educating us and other fellow sufferers. Your courage is shining beacon and puts our own problems into perspective.

    • Thank you 🙂 There are no cures- just ways of managing the disorder. I’m hoping that the blog is helpful… my topics are all over the place, but it helps to be able to just start writing, and ‘unload’ the stuff stuck in my head 😀

  2. I can’t begin to thank you enough for sharing the details of your experience. It’s impossible for e to explain to people how much heat intolerance ruins me (really, it’s non-cool intolerance!), and you’ve described it perfectly. Like you, can can not function in an environment that’s not cool. I keep my home at 62 degrees and in the dead of winter, I wear a very light jacket out (on the rare occasions I go out), just so fewer people stare and comment.

    Thanks so much…it means the world to me to know I’m not alone.

    • ‘Non-cool intolerance’ is a much better description… I just got back from the grocery store; it’s 30 degrees outside, I’m in a t-shirt, and took my sweatshirt jacket off as soon as I got inside the door of the store, and carried it to the car. And, now I’m ruined for the day. My face feels like a lava flow.

      You’re definitely not alone 🙂 Check out the ice vests (GlacierTek), and ice bandanas (the ones that have frozen inserts work better for me). I had to get a heavy duty cooler with ‘resusable dry ice’ (Amazon) that keeps stuff frozen in the Polar Bear canvas cooler for 24 hours, should I need to be away from home that long (usually in the hospital if that happens).

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