The POTS ran away with my SPOONS!: I'm perfectly sober and yet...

Friday, 22 January 2010

I'm perfectly sober and yet...

I just totally misread an advert on facebook as saying: DOMINATE YOUR HAIRDRESSER.

It actually said NOMINATE. hahahaha! I had to do a double take because I thought facebook was turning porny. lmao.

I had a good time tonight. It cheered me up. I came home with a very full belly (a good appetite and an extra stone of weight made a big difference to how much I could eat- I cleared my plate, and there was a LOT on that plate!) and a sense of happiness. A marked improvement to how I left! Margit is great, she's always so exuberant and we have such fun, she always makes me feel good and perks me up no matter how tired and crappy I feel.

It was so funny when the waitress came over and asked if we wanted any sauces. We both asked what sauces they do- well- Margit asked as I was about to- and then the waitress said mayonnaise, salad cream, barbecue... and at the same time we both went, in the same excited fashion- "Oh, BARBECUE! Please" (the way we said it was like 'YAAAY BARBECUE!') it made the waitress laugh as well as us at each other!

Then we ate good food and had good natter. I had a chargrilled chicken wrapped in bacon, filled with mozzarella cheese and bacon bits, with about 10 seasoned potatoes and the YAY barbecue sauce. I've never managed to clear my plate of so much! I like being one stone heavier and having a good appetite!! I just hope I don't get fat :/

I actually feel a lot better physically too, even though moving my body still feels like moving lead through treacle. I think after a good nights sleep I will be feeling much better tomorrow, and I am looking forward to having lunch out for my Grandma's birthday and then going out to Lee's friends house for a meal.

So, even without going to the pub, it's a great weekend!

2 comments:

Ericka McCarty22 January 2010 at 19:32
I misread things at times, as well... Usually it's something really funny, and it comes at a time when I really need a laugh. I am glad that you are doing better physically, but having POTS myself, I know how it does come and go... Just remember to pace yourself (I KNOW just how difficult that is). I hope you do stay feeling this well!
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em24 January 2010 at 11:00
hi

i usually misread words, i say things round the wrong way, at first and still sometimes now i find this difficult. other times i just try to laugh. its not the end of the world.x
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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?

Friday, 22 January 2010

I'm perfectly sober and yet...

2 comments:

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Dysautonomia Demystified.