Sunday, March 21, 2010

All Fall Down!

9:30 pm

86/60 96 bpm (standing)

Some good things and some not so good things have happened since my last post. I don't even know where to start. OK, I'll start with the bad, that's always easier (she writes with a straight face).

I've had a problem with stairs for a few years now, usually walking down them, but sometimes walking up them. When I walk down them, it's as if a step will disappear and my leg will hesitate to put my foot down and then I'll start to trip. Only my brain is registering it as disappearing because obviously, the step has not gone away, and it then tells my leg to stop. It all happens in a nanosecond and if I wasn't holding onto the railing, I would tumble down the stairs because it upsets the rhythm of walking down the stairs.

I've discussed this with my neurologist and he had always blamed it on the meds for my migraines making my muscles weaker or something like that. I always believed it was a disconnect between my brain and my legs. Maybe caused by Topomax, maybe not. Mind you, this was happening before I got full blown dysautonomia (In my previous posts I said how I believe that the dysauto had been coming on for years though).

So I have this rule: always hold onto the railing when walking up or down stairs. Because I have the same disappearing step syndrome when walking up stairs too. And now, with the POTS, my legs get exhausted after walking up just three or four steps which makes this even more tricky. My commute to work involves tons of staircases, escalators, up, down, steep, long, inside, outside, all around subways and train tracks. Lovely.

So a week and a half ago, I'm walking along the subway tunnel that leads to Penn station and I see the marble stairs that will take me up to the waiting area for the trains. I see the six steps ahead of me, keep my eyes on them, and for some reason, don't hold onto the railing to my right. I walk up hard marble stair one, two, three, four, five...uh oh! Suddenly my arms fly up in the air, my knees buckle and become airborne and I land square on them-CLUNK! The noise of knees to marble is so loud, the room filled with commuters waiting for their trains turns around to look at me, their coats whirling out around them.

I quickly put my head down in embarrassment and my first thought (after being embarrassed) was "what the hell just happened?".

For what seemed like forever, I just sat there kneeling, like I was praying to Jesus in church, and to my left I saw a man's dark gray trench coat, from the legs down, pausing. I finally, head down, turned his way and said, "I'm okay", and he continued on his way. I finally got up, looked straight ahead, and walked the length of the room and disappeared, down the stairs to my track.

Throughout the day, at work, I felt shooting pains up and down my legs and I still have painful bruises today. That fall was significant to me because the reason I fell was yes, the weird eye/leg disconnect, but it was also the leg exhaustion from the POTS. It was such a literal painful reminder that I have this invisible syndrome. It made me feel like such an old biddy.

Which leads me to a good thing. There are stages to things in life. There are stages to diseases and syndromes-when you get them. I know, when this hit me, my first stage was denial and amusement. Then it was denial and anger. Then denial and self-pity. At seven months in now, I am happy to say that the denial is over. Luckily the denial went away before the fall, so the fall wasn't as traumatic as it could have been. In fact I joked about it (I joke about everything).

I think now I'm in a begrudging acceptance stage. I'm getting used to all the rituals: the extra meds I have to take, pouring salt on everything I eat, carrying home Poland Spring water, flavored fizzy water, and drinking it non-stop, being bloated with water retention, ignoring the fatigue and overwhelming desire to put my head on my desk at work and just go to sleep, grabbing the empty seat on the subway, going to bed earlier. I'm learning to control the new migraine pain on top of my old migraine pain (with yet another drug).

But the most satisfying part of being in this stage is that I've started seeing my friends again. I have the best, funniest friends on the planet, and that goes for my co-workers and family too. For the last seven months, I haven't really done anything socially and now I'm starting to. The new reality is, I'm tired. So, be tired. But be tired around friends and family, not alone. The more I'm around people who make me happy, the farther I am away from the dysauto.

So I've stopped fighting the OI, and the POTS and started integrating it into my life. Begrudgingly.

Another good thing is, I've been sleeping much better, often through the entire night, again. That's been great! And, although I'm not going to travel this year, the thought of Spain next year is growing on me. I want to go to Barcelona and see the Barcelona soccer team play; then I want to go to Madrid and see Real Madrid play. Ronaldo plays for Real Madrid. Ronaldo, now that's a good thing!

2 comments:

  1. I like that philosophy- if you're tired anyway, be tired around friends and people who make you laugh. :) xx

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  2. Hi there!

    I'm Lucy, I have Costochondritis and Celiac, but follow a lot of POTS blogs. Your post touched me b/c I went to school and lived in NYC for a long while getting sicker- hoping to move back soon. But WOW- living there with POTS,...it takes such energy to live there in that crazy and amazing place. As I was getting sicker, the city just kicked my butt all the way to Texas! Hugs to you, look forward to following your journey. Thx for sharing a great post.
    Lucy

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