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

Wednesday, 10 March 2010


I've been too busy (and thus too TIRED!) to update this blog lately, but I will get around to it. I'm taking a weekend off visiting my boyfriend this weekend due to it being Mother's Day. I love spending time with him but I'm relieved because I get better rest at home and I NEED THE REST!!

Today I wasn't having the best day physical symptoms wise (had a sleepless night with the feeling deprived of oxygen and getting body shakes/twitches weirdness)but I felt inspired to make a website explaining dysautonomia, as I saw some friends last night I hadn't seen in a while and they were asking me how I was doing, and I'm finding myself getting weary of explaining this thing that is so darn hard to explain! So I figured, those true friends that care and want to know, can be directed here:


One little thing I will say is my boyfriend was lovely at the weekend. He mentioned the email and how part of it said I need to know that he still cares about me despite all this, and he told me "I do care about you, of course I do"

I managed to be very honest back and said I felt guilty that I'd only found out I have an incurable health condition recently, because it made me feel like I'd made him fall for me when I was going through a healthy phase and now I'm not he has to put up with stuff he could never have known he was getting himself in for, and I worried it would put him off and make him change his mind about me. He said if it was anyone else, maybe it would put him off, but it doesn't make him change his mind about me, which I thought was really rather a special thing to say. It made me feel like he was saying he can see beyond my illness to ME. And that he won't let the illness get in the way of him caring about ME. He then went on to say the shorter length walks are fine and that he just wants to spend lots of time with me, which he said is a big compliment coz in the past he's grown tired of a woman's company and wanted her to leave him be, but with me, he wants to see me MORE.

Then on the actual walk, he made sure I was feeling okay, and when we had to walk up hills, he was patient and understanding when I needed to stop and rest, and told me that at the top of the steepest hill was a bench. :-) After the walk, he told me I'd done well and he was pleased I enjoyed it.

He's not perfect mind you, he wanted me to go to the bar and order food at the pub we visited after the walk, and he rolled his eyes at me when I said no, I want YOU to go because I'm really tired now! (We were sitting down at the time). But hey, I never expected perfection- I'm not perfect either and he accepts my funny moods and my snappy-ness when I'm tired. And how I can be stubborn and sometimes don't say things in the nicest of ways when a raw nerve is touched. So, I feel much better now I've been honest and open. I need to remember that it's hard for others to understand, and that keeping it all bottled up doesn't really do me any favours.

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