The POTS ran away with my SPOONS!: An interesting (well, for me) observation...

Monday, 15 February 2010

An interesting (well, for me) observation...

The more I have looked into POTS, the more many seemingly unrelated and senseless things in my life MAKE SENSE.

Earlier today, after I did my 10 minute standing test, I really needed a no2. (Sorry if that's TMI for some people!). It occurred to me just now that this always happens when I go shopping. I'd always assumed that for some strange reason, I got 'overly excited' about looking for new clothes (it would never happen in book shops but then I have a reason which I'll get on to) and that triggered off an IBS type response. The number of times I've walked into a shop and started browsing only to think damn, I need to find the toilets now!

Well, since it happened this morning after standing for a while I wonder if it's nothing to do with shopping (or excitement) at ALL but just a bodily reaction to standing in and of itself. I'm not at the moment clever, savvy or 'on the ball' enough to be able to work out why that particular mechanism could be triggered by orthostatic intolerance, but I bet there's a reason it could be.

So, even my needing to poop whilst shopping now (kinda) makes sense!!!

This evening's tests: (done after a meal BECAUSE I was feeling tachycardic)

BP sitting 99/66 Standing 102/75
Heart rate supine: 80
Standing 1 min = 123
Standing 2 mins= 122
Standing 5 mins= 129

EDIT: I forgot that I was supposed to write about my theory on why I don't need to poop when I'm browsing in bookstores. Well, because my very favourite thing to do in a bookstore is crouch down, or even better sit on the floor, while looking through various book choices before deciding on which to get! Therefore, without the orthostatic intolerance, my bowels do not need to move and that means I do not need to 'go' and can also not move but stay where I am, happy with my nose buried in a book.

3 comments:

Michelle Roger15 February 2010 at 14:14
LOL welcome to the No2 phenomena. It sounds like something Mulder and Scully need to investigate LOL.
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em16 February 2010 at 02:03
im sure theres a nerve connected to your bowel, which in connected to your heart, well thats what i was told in hospital. makes sense so when you heart rate increases the flight of fight sensation comes into play, so you can empty yourself to run away.

with the body being messed up with pots, its going beserk. like a badly wired computer. sometimes i felt quite naseous when i needed to go.
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Laura17 February 2010 at 04:06
LOL Michelle- that reminds me of the Catatonia song, except the lyrics could be adapted slightly... "I feel a sense of urgency... this could be a case for Mulder and Scully" hehehee.

Em- that really does make sense! You're not Scully in disguise by any chance are you? ;)
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Dysautonomia Demystified.

Dysautonomia is a dysfunction of the autonomic nervous system. The ANS controls all the things you don't think about, like digestion, body temperature, blood pressure, heart rate.

The form I have is called "POTS".

"POTS" stands for "Postural Orthostatic Tachycardia Syndrome" which in simple terms is rapid heartbeat when standing.

That's only one of the symptoms. It's called a 'syndrome' because there are a vast array of other symptoms involved. Because it's a disorder of the ANS, anything which that controls can malfunction.

The symptoms I personally experience are:

*Fatigue: POTS can be draining and even debilitating as it takes 3 times as much energy just to stand up when you have it, therefore doing every day things is like running on the spot all the time- if an ordinary person did that, they'd be tired! That's the reality of living with POTS- you have no choice- you can't "stop running" because your body is keeping you 'running' (physiologically) all the time you are standing.
*I also have Inappropriate Sinus Tachycardia, which is a speedy heart rate all the time, even when I'm 'resting'. This means that for me, even sitting down is like jogging on the spot, or doing star-jumps. Basically, it's like my body never truly gets to rest. So I'm pretty much always tired!
(Check out The Spoon Theory for a good explanation of what it's like living with limited energy and having to forward plan everything to make sure you don't leave yourself short).
*Overactive Bladder (nervous system controls it, nerve signals aren't working right)
*Excess Thirst/Dehydration (if ever I find out why I have this, it'll be a miracle!)
*Migraines, or if not migraines, certainly frequent headaches.
*Neck and back pain
*Muscle aches/joint pain
*Brain fog- which makes a person forgetful and slow in their thinking, have difficulty accessing information stored in the brain, e.g. difficulty finding the right word, finishing sentences, remembering what to do and how- it's like having senile dementia; I joke about the dozy things I've done because of it because you have to laugh, otherwise you'd cry! Having an illness that disrupts your whole body is one thing, having it try to take your mind as well is another.
*Gastro-intestinal problems- bloating, reflux, feeling full quickly
*Disturbed sleep patterns (aka not sleeping well and also not feeling as if your sleep is restful even when you do).
*Involuntary muscle jerks when I'm trying to relax/sleep.
*Feeling as if I can't get enough oxygen, even though I'm breathing fine (very weird).
*Fidgety, always 'wired' feeling (makes it hard to truly relax)
*Feeling overstimulated easily
*Not being able to stand still for too long, due to excessive heart rate climbing higher and higher, which makes me feel physically 'stressed'.

There's possibly more but brain-fog makes one forgetful... I think that's enough to paint a picture anyways!

The POTS ran away with my SPOONS!

I thought it was the dish that ran away with the spoons?

Monday, 15 February 2010

An interesting (well, for me) observation...

3 comments:

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Dysautonomia Demystified.