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!

It's My Party and I'll Cough if I Want to

9 pm

83/63 105 bpm (standing)

What a cranky last week and a half it's been. I turned into a total "pothead". Not smoking the stuff, but I got a POTS migraine that just wouldn't quit. So instead of going down on topomax which my neurologist and I were trying to do, I put myself back up to 200 mg a day. And it seems to have worked. So now I have the hormone (monthly) migraine for 2 weeks a month, the regular migraines ocasionally, and now the POT migraines. Pothead. Great. They're brutal. Not as brutal as the hormone migraines, but just a point or two lower on the 1-10 misery scale.

And then my biggest fear came to fruition. Despite my obsessive hand washing after the subway and train rides to work, and in-between, I caught a cold last Thursday. During the second giant snowstorm to hit NYC. I've been home from work since. I am going back tomorrow, on my birthday. And I will cough! And blow my nose, for the 4,563rd time this week.

I have not caught a cold or had any other "normal" illness since the dysautonomia hit last August and I have feared that happening. And my fears were realized. My blood pressure has been lower than usual - 65/49, 71/54, 67/52, and my heart rate has been 101, 112, 103, 100, etc. And so where a cold in the past wouldn't keep me out of work for 3 days, it did this time, because I'm just too damn dizzy to leave my apartment!

The monkeys of dysauto complicate everything! They're just such opportunists! Oh, she's got a cold! A sore throat and now a cough?? Let's lower her blood pressure even more so when she stands up she's gonna pass out! Tee he he he he!!!!

Well I'm tired of watching reality tv and reading 3 books on my Kindle, and boring my poor dog to death. I'm hauling my butt out of bed tomorrow to go to work and get out in the world even if I still do feel like crap. I only have to make it through two days until the weekend and then I can rest again. Well, sort of, my family and I are celebrating a bunch of our birthdays together on Saturday so I'll be getting on a bus to go to NJ once again! But I look forward to that.

And I look forward to going back to the gym. Eat, work, exercise. That's the routine that keeps my head above water. And this week, celebrate my birthday, my first having this insidious syndrome. Welcome aboard POTS. Welcome aboard OI. I hope you don't mind, when I blow out the candles, that my wish will be for you both to go away...