The POTS ran away with my SPOONS!: Been busy over at DARE

Monday 22 March 2010

Been busy over at DARE

Hi fellow bloggers and followers.

I've been putting all my time and energy into the group blog project that is DARE. Whilst I will still continue updating here when I can on things of a more personal nature, I might be a little more sporadic here.

In the meantime check out DARE- I'm sooo proud of it and excited about it and so thrilled with the team- I could not be doing it without them, believe me.

Check it out!

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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 22 March 2010

Been busy over at DARE

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Dysautonomia Demystified.