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

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Monday, 18 January 2010

"This is the man I dance with very sexy, very close, body to body."

I just wanted to say, I had a great weekend. I felt positively dreadful on Friday but by way of some miracle, Saturday evening I felt relatively normal (for me).

I did have a dreadful night once I tried to sleep mind you, not sure what caused it, I think possibly eating so late- I just couldn't digest the food and my tachycardia felt awful even laying down. So I was awake until FIVE. Then I got stupidly over emotional in the morning after a meager 2 hours of 'sleep' and shed a few quiet tears a couple of times, but that was mostly the combination of fatigue and hormones. Generally, I'm not all 'woe is me'. I was just so frustrated that I'd not slept AGAIN.

I started a period Saturday which explains why my week was so awful. It was a relief to be honest, I thought the worsening of my fatigue, dizziness and tachycardia might have been due to walking up a slight hill in the snow with my boyfriend- a walk which I very much enjoyed. I consider myself so lucky that I can still do 'normal' things like walking and dancing, even though I do 'pay' for them with excess fatigue for days afterwards. However, being so tired and low in mood didn't feel like me. And it wasn't. It was me with hormones, which is never really 'me'. I'm sure other ladies who suffer PMS even without POTS can understand what I'm saying here.

So, Saturday night I went out for a meal for a good friend's birthday. I was absolutely blown away by the generosity of this friend, who payed for EVERYONE'S meal. There were between 40-50 people there!

I took my boyfriend out with me for the first time amongst my good friends. (We've been together 6 months and during those 6 months he was working on a dissertation for uni and wasn't socialising with anyone but me- even his best friends only saw him a few times in those months). We didn't get to all sit together for that long because the host arranged this thing where we all had a designated seat with people we didn't know- he's very much a 'social butterfly' and I guess wanted everyone to 'mingle' and not just be stuck with the same people. It worked to a point but I'd have preferred to have stayed for the majority of time with my friends and boyfriend- so I think perhaps it would have been better had we just done the exchange of seats for pudding, rather than for the main course right until the end.

My best friend made me laugh so much as usual. I only met her last year but we've become close very quickly because we are so alike- she's very outgoing and full of energy- which I am too when I'm out, believe it or not. Sometimes, I really can't believe I have this condition (it's not diagnosed yet but I'm almost certain after my poor man's tilt tests) when I can be so energetic; even though there are often times when I feel worn out from these times I push myself, I am very grateful I CAN push myself, there's plenty who can't and I don't think I'd have their strength, bravery and compassion if I couldn't.

Anyways, I digress. Margit made me laugh so much because she's so bubbly and outspoken, that mixed with her accent always creates hilarity. When she introduced her boyfriend to Chris (another good friend who is often out with us when we go partying) she said "This is the man I dance with very sexy, very close, body to body." Her boyfriend responded with a kind of grumpy demeanor and she said: "What am I to do, you don't give it to me so I have to find it elsewhere!"

She also said to him- regarding me: "Oh, I love her! She is the best! She's better than you."

I think we'd have had a FANTASTIC night had we not all been split up, as Lee (my boyfriend) was very funny and making Margit howl with laughter, Phil is also very funny, and I was getting to know Margit's boyfriend who is very shy and the total opposite to her in character.

Still, it was a great night and I wasn't jealous at all when my boyfriend was chatting away so much to the woman he got sat with and didn't even seem to get bored or wish he was sitting with me. Although I did wish he'd looked round at least ONCE to see how I was doing with my random 'friends'...

I admit to being relieved when he told me the lady he'd enjoyed talking to so much was married. I'm not a jealous type, but something I do worry about is the fact that when we met, I was doing good and now I'm not doing as good, and I know he wants to take me on longer, harder walks and the fact that I want to but CAN'T isn't easy. So when he started telling me "The woman I was talking to lives on my ROAD, can you believe that? And she likes walking and running!" it made me feel a sudden jolt of fear. Not because I feel like he doesn't care about me, because he makes me feel very loved- but because I worry that he could one day end up wanting to be with someone fitter and healthier. Someone who can get up in the morning. Someone who can get up without having to be wrapped in a blanket shivering and drinking 2 pints of water before starting to feel capable of speech. Someone who can play scrabble without getting brain fog... and the list goes on.

Even though it's a young relationship, I do feel as though he loves me enough to want to stay with me despite my limitations. I'm just a natural worrier at times and anything my mind can find to worry about when it comes to 'matters of the heart', it inevitably will.

However, hows this for "Perfect POTS Partner"? When I got to his house, he had a pint of water waiting on the table for me, which I appreciated VERY much, because as well as always feeling thirsty, I have an overactive bladder to contend with, which means that when I drive over to see him, I stop drinking for a while before I set off so that I can be sure not to be caught out needing the loo if I were to get stuck in any traffic. This means that by the time I get to his house, I am ALWAYS extremely thirsty.

He also bought me over a glass of water when we were at the restaurant as he thought I'd be feeling thirsty. Most boyfriends were buying their girlfriends wine, mine brings me iced water. It must be love and the "PPP."

I do so wish though that I could get used to sleeping next to him and not have surges of tachycardia every time he rolls over in bed! Yes, that truly happens. I think that subconsciously as I'm drifting close to sleep I must think that I'm on my own as I usually am, then he'll turn and I'll get a fright at the noise and sudden movement!

Thankfully in my own bed I am sleeping well again now my hormones are settling down or whatever it is they do when they've stopped making me pre-menstrual. I need plenty of rest this week because I'm going on a Big Night Out on Friday night. This shall involve some of my most favourite activity, dancing. Incidentally, when a friend first told me she thought I might have POTS like she does, I poo-pooed it because I thought- that can't be me when I can dance for hours! But I am learning that there are no 'norms' with POTS and that just because I am lucky enough to be able to stay on my feet and dance the night away, doesn't mean that I don't have POTS... I've seen what my heart rate does when I'm doing 'normal' things and I see that that's not normal! God knows what it does when I'm dancing, personally I'd rather not know. I enjoy it, I love it and I feel very blessed that even with this, I can still do it.

And do it I shall, come Friday. Let the 'spoon gathering' begin!

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