The POTS ran away with my SPOONS!: Old blog

Tuesday, 19 January 2010

Old blog

I was looking through my 'old blog' (that I kept 2007-2008) and I can't believe how often I mention

Feeling tired
Dizzy
Drained
Having no energy
Having a 'fluey virus type thing' (since I've found out about POTS I actually believe that these 'fluey virus type things' were simply times when the POTS was acting up worse than usual).

I don't think that was the start of the potsyness though. I've felt that way on and off since 2001 when I got a virus at uni. 2002 was when I started with my awful, horrendous, fuck-this-feels-like-labour-or-gastroenteritis (the latter of which I have experienced, the former thankfully not) pain. 2005 was when I started with Overactive Bladder. 2008 (approx) was when I noticed that I was thirsty all the time.

Look at this entry from said old blog:

Thursday, 14 August 2008

I've really had it.

I don't know WHAT is wrong with me but I know SOMETHING is!!!! And I want to know WHAT!!!!

I am exhausted. I look like shit. I feel drained. Every time I eat I feel queasy. I've lost weight. And lately I am THIRSTY ALL THE TIME !!!

I've already been tested for diabetes so WTF is this?!!!!

Oh and to top it all off I feel like I can't talk to anyone about it coz everytime I do I just feel like I am complaining and no one wants to be friends with someone who is always complaining.

I feel in need of blood tests and check-ups but they nearly always end up making me feel WORSE because they come back fine and the Dr looks at me patronisingly and says "You are healthy Laura." and I could WRING HIS NECK because just because they haven't yet FOUND what is wrong DOES NOT MEAN THAT NOTHING IS!!!!!! I *KNOW* that I SHOULD NOT be feeling this way!!!!!!!! It isn't 'me' and it isn't 'normal' !!!!!!!

Posted by Laura at 4:22 PM

This entry is the best way to sum up why I am hoping to FINALLY get a diagnosis. I don't WANT to have POTS or anything else for that matter, but if I do have it, I want the diagnosis. I want the treatment.

I get hooked up to the Halter Monitor tomorrow.

For the first time ever, I am hoping for a VERY 'potsy' day...

2 comments:

Michelle Roger19 January 2010 at 16:35
Uncertainty is horrible. I don't wish POTs for you but sometimes having that diagnosis gives you so much relief. I remember the pre-diagnosis days ick. Don't get down though if the halter doesn't give you all the answers (although I hope it does). My halter came back normal even though I was passing out how I have no idea this is a ridiculous disorder. So here's sort of wishing you a diagnosis, Good Luck :)
Whoa just read that back talk about ramble. Sorry.
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Laura20 January 2010 at 03:38
Funny, because it made perfect sense to me! Guess my brain is well equipped to understand ramble, since it does it so often itself! ;)

Thanks for the good luck, I appreciate it- with such a ridiculous disorder suspected, I don't doubt I will need it! :)
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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?

Tuesday, 19 January 2010

Old blog

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Dysautonomia Demystified.