I’m hoping to address dysautonomia at cardiologist’s office tomorrow. I am aware that I probably need to see neurologist but am actually scared of what they’ll find. I don’t really want any problems with my brain.
POTS is: heartbeat raising 30+ bpm within 5-10 min of standing very still. Then it drops right back down upon sitting. That’s my understanding, anyway.
So, for me, today I had to run a couple errands and, since I had to finish today, it took me more than an hour. Plus, it wasn’t the ‘hour of sitting’ (like Bible study, church, library) and I had to stand and walk. I become so exhausted on an errand that it becomes a bit of a ‘wandering event’ and I’m not particularly effective. It takes much longer than it should. Like no oxygen and/or blood to brain or something?? Anyway, yes to all of the above. It took me a couple of hours. Of course, it probably shouldn’t have taken that long. I felt shaky and sick too. Now: Here’s the kicker… EVEN A COUPLE OF HOURS AFTER I’D REMAINED NEAR EXCLUSIVELY SEDINTARY, I WAS STILL HAVING MY HEART GO CRAZY!! That’s not POTS, right? Where it just goes crazy a couple of hours after the perceived offense. Of course, I end up a lead zeppelin and am panting/gasping for breath from massive exhaustion. This makes me wonder if I can do what I need to do in time for the morning – AND IT’S LATE AFTERNOON!
That’s GOT TO BE dysautonomia, right?? It doesn’t have the standard expectations that POTS does. What the heck is going on? I still have the shakes and feel sick and it’s 8 hours later! Is it CFS? I know that can wipe a person out for days and I notice that if I need to do something (IE: MD appt that costs an hour of drive time), I remain depleted for days (2-3).
I just want to know what to ‘attack’. How to ‘divide and conquer’. What goal would be a primary. I still have a brain that remembers normal and logic. It’s ultimately painful (mentally) to no longer be able to use my brain logically. Pretty sick, really. A ten minute menial task could take days (if I have a migraine, am unable to lean/bend, am trapped on toilet). I can’t even plan. I mean, c’mom… Who couldn’t do a 10 minute task in 2 days? Gimme a break! Well…. if you factor in the exhaustion, short term memory, pain which distracts focus, etc etc etc. I always used to just ‘knock it out’ swiftly and immediately – whatever it was. Now, it’s like an identity crisis. I would never avoid a task that I didn’t want to do – I’D KNOCK THAT OUT FIRST SO THAT IT WOULDN’T BE A MONKEY ON MY BACK!
So, I’m trapped with inability to complete less than desirable tasks, with the knowledge that a clean house is a personal expectation and I’d always kept a clean home for my self esteem, I can’t get a break from my hands and wrists causing messes which I can’t lean over to clean up, NOW REMEMBER THAT MY CHORES ALWAYS HAD TO BE DONE BEFORE I FELT GOOD ABOUT DOING SOMETHING THAT I ENJOYED!! I’ve made myself walk away from the mess and try to take a break and do something ‘nice’ – THAT DOESN’T WORK EITHER! I’m miserably sick and, no matter how great the great thing is supposed to be or no matter how sedintary I’m able to be – when you are SICK ALL THE TIME WITH NO END IN SIGHT – it’s just not fun! Lipstick on a pig. Perfume on poop. That’s what doing something ‘fun’ is like. Frankly, I avoid it anyway because I always made myself complete obligations FIRST! I knew I’d have the ‘monkey on my back’ if I left chores undone – always knew that since I was a teenager.
Like being sick on Christmas – oh, how dreadful, huh? Easter – was pooping myself this past Easter and had to miss Easter egg hunt that I desperately wanted to sit and watch, at my church. How bout a flu that is never going to go away -never! Try that on for size. How’s that for logic?
Nobody comprehends (the logical portion of my brain included) the phenomenon of being so exhausted as though ‘I’ve never slept’. Oh, get some sleep. The sickest of the sick seem to believe that getting a good nights sleep is refreshing. I still remember when that was the case for me too. It doesn’t make a s… of a diff anymore!!!!
Try explaining dysautonomia when everyone wants to PROVE that it’s anxiety. I HAVE BOTH AND THERE IS A DISTINCT DIFF!!! Don’t try to tell me that the unprovoken physical havoc was caused by my anxiety and begin SLINGING FACTS AT ME!! I KNOW THE FACTS!! Or at least the ones that I’m willing to comprehend as I live this nightmare! I know EXACTLY what a panic attack is!! I know MULTITUDES of HORRENDOUS pain, feelings, sensations, exhaustion, freezing, burning, sweating, chronic nausea, chronic GI issues, etc etc etc, heart problems, migraines. I know EXACTLY what it feels like to have my body go medically insane on me, unprovoked!!!
You know, many sayings have diff meaning to me. Such as: if you’re not part of the solution, you’re part of the problem!