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

Friday, 29 January 2010


After ranting and raging about the damn nerve of the cardio telling me to 'put on weight and forget about it' I have emailed 2 consultants who deal with POTS, inquiring as to whether they could test me for it if I got a referral from my GP.

I'll await to hear from them before I make my next move. One is local, which is a plus, with a 'special interest' in POTS. I'm just wary of seeing people who I haven't heard good reports about now, after the palava that was today. I'd be so pissed off if precious time was wasted yet AGAIN. Though the fact he knows about POTS and syncope suggests that he should be on the ball with it. I'm just wary as to whether 'should be' means WOULD be. Though he was listed on the STARS website so that should I hope count for something.

The other is Prof. Julia Newton, who is listed on the DINET website as well as STARS and who I've heard a couple of good reports about. This would mean going out of my way and travelling much further afield, but it'd be worth it to see someone who knows what they're doing and has a caring nature (apparently, as past patient reports I stumbled across said).

So I don't know yet, depending on the responses I get, and on things like waiting times for referral, I'll hopefully be able to see either Prof N or Dr John West closer to home.

It's just more damn waiting but I keep telling myself, least I'm getting closer...


So, the summary of my appointment is as follows:

1. I have "Inappropriate sinus tachycardia."

2. It's a benign problem

So 3. Don't worry about it and

4. Fatten up, because my 'build' is making me 'feel it' more.

When I showed him info on POTS and asked if he thought it could be that, or if I could be tested for it- he was dismissive and said

5. You could be tested for it, but even if it is that, there's nothing you can do for it anyway.


Come off my trospium chloride because it can make IST worse. (Which means I will be back to being chained to the bathroom as I will have to pee every 15-20 minutes).

Forget about it.

I feel incredibly frustrated, angry, ignored, dismissed and upset.

Wednesday, 27 January 2010

The Story of The Dress

I've just been talking with a friend on facebook about the dress I will be wearing to the school reunion IF* I go.

It reminded me of the great lengths I went to to get this dress. I was telling her about this and as I was writing it, it sounded to me like a made up story, something you'd expect to read perhaps in a chick lit novel, hyperbole for the sake of adding humour, but I swear it is all true.

The villain of the piece is BRAIN FOG.

I suppose it was my own fault for agreeing to go shopping 2 days after New Years Eve. I felt 'better' but 'better' was compared to the previous day during which I was hungover, and all my POTS symptoms and fatigue were exacerbated.**

So my poor brain had obviously not recovered from the depletion of brain cells and oxygen, and quite obviously, carrying a bag with a lovely new dress in it that I didn't have previously was just one extra thing too many for it to have to consider. So naturally, when I put the bag down to try on a coat, it was a case of 'out of hand, out of mind...'

Imagine, 5 minutes later, racing back to the shop as fast as one possibly can with tachycardia, and the panic on top of that of realising that due to your own frustrating stupidity, you've lost The Dress that you fell in love with and were so excited about wearing...
The shop assistants haven't seen it
It's not under the coats you tried on
Maybe it got kicked along under some others
Or maybe... maybe I left it by the gloves when I tried one on to see if it would be nice for Lee! (he always gets cold hands, bless him)
Oh dear, it's not here... but can I be sure I left it here? Shit, I might have left it in that other shop...
The lady says she didn't see me carrying a bag when I walked in, and it's not here... better try that other outdoor pursuits shop... not here, not here... oh god, what if I didn't look properly in the first one?
Another frantic search round, ignoring the 'looks' from other shoppers- getting down close to the ground and sticking your nose into racks of coats... nothing but the empty floor underneath, damn damn damn!
Asking again- in case someone handed it in while you were gone... but no... yet there's hope- check security... but they haven't had anything handed in either- someone must have taken it, your lovely new dress that you've not even had the chance to wear, save in the dressing room where it looked so beautiful and made you feel so good.

Back to the shop to see if they have one left but no... they don't.
Then it's time for the tears, not just mourning the loss of the dress because it's much more than that- it's more much even that mourning the loss of the dreams of wearing that dress and dancing in it, feeling so good... it is mourning the loss of being able to trust yourself, rely on yourself, to do simple things like remember to pick up a carrier bag when you've put it down... they are tears at the fear of not knowing what stupid thing you're going to end up doing next... like forgetting to turn the gas off and leaving heaters on when you've left the house... the quiet, cold dread of a fear that seeps into your psyche, reminding you of your Grandmother with Alzheimers and how she'd do things just like that... reminding you that, if you can't even trust yourself, how the hell can you expect to do anything 'normal', when your brain keeps betraying you?

Then you're so depressed that you think sod the damn money, I want that dress. So it's back home and on to the internet to search for it on the online store and YES, YES they have it! But no, oh no, not in your size...

So you start frantically ringing round other shops and finally track it down somewhere nearby, you get a lift with your very kind Mum (who obviously feels sorry for you despite not being able to understand what it's like to have a sieve for a brain) to the shop and when you get there... there's a fire engine outside and everyone has been evacuated!

So you do a little food shopping at a nearby store and come back. The shop looks like it's about to be closed up! Your Mum shouts under the half down barrier to an assistant, both assistants come to the doorway- she explains about the dress that you'd phoned and reserved to order- hands over the cash and yes, at last- The Dress is finally yours.

This time you clutch the bag tight and don't put it down, not even for a moment.

Because that's all it takes, just one moment, and your brain can be lost and you can be lost and your life, yourself, can be lost.

If you can find it again in the beauty of a black and white dress with black orchids and tiny, glittery sequins on, then you will. You'll wear that dress and remember- it's not easy living with this, any of it- but you do your best and you don't give in and you dance when you can and feel beautiful, because no matter what, no matter how frustrating it gets, life is beautiful.

So you have The Dress and you Never Forget.

*That's a big IF because I have committed myself to a Big Night Out the night before with Margit, she is having surgery on her ankle soon and will be housebound so going out with her now, while we can, is of the most importance socially. I don't know if I can do two nights in a row. The one and only time I tried it, I had to go home because I started feeling like I was about to throw up. Looking back now, this seems like I had a bad Potsy episode, I came close to fainting, I thought I was having a panic attack, I felt hot, dizzy and sick, I got back to my friends uni hall and lay in her bed and felt okay, aside from the residual effects of the dizziness, once I was horizontal.
I also REALLY want to see my boyfriend, now we are in the 'honeymoon phase' (lol) I don't want to skip a weekend that I could be seeing him. If it wasn't for POTS then I'd go out Friday night, Saturday night AND drive over to my boyfriends after the reunion party. But I don't know how I'm going to feel and if I can do that. I HAVE been feeling better lately, but 'better' is not 'normal' and this is so unpredictable so I'm just 'going with the flow' and will just have to see.

** I only recently started getting drunk- I tried it once when I was 17, thought 'oh that was funny, but not again' (I always had emetophobia so that was a big deterrant and I've never made myself THAT drunk) and from then on, would only ever drink a glass or two of wine on holiday, and one or two alcopops when out clubbing- most of my time was spent on the dancefloor, where drinks aren't allowed!
Because of this, I am still learning my limits and it was the second time in the last few months I'd gotten myself drunk enough to really regret it thanks to making everything worse for myself POTS wise. But also, because I missed out on a lot of fun and going out due to other problems, sometimes I disregard the consequences of my actions and decide to just 'suck it up' the next day. And boy oh boy, did I have to!

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!

Big Night Out

not happening.

I was being optimistic and telling myself I'd be okay for it, but the reality is very different- I pushed myself beyond endurance yesterday while wearing the monitor. I did loads of jobs, went to the shops and walked up the biggest hill in the village. Today, my head hurts, I'm very tired and my tachycardia is on the bad side so I'm sitting as much as possible.

I don't feel that disappointed though. I don't know whether this is some emotional numbness that my body/mind keeps creating to protect me from sad/frustrated feelings, because I do hate saying no to things I'd looked forward to, or whether it's because I felt way, way worse when I actually had depression and didn't have any nights out to go to because I had no friends anywhere near me. Knowing that I have friends who I CAN see at times when I do feel okay is for the most part keeping me feeling kind of okay with this. These friends are members of the walking group (which is also like a big social group) which puts on plenty of social activities throughout the year, so I can 'pace myself' and do what takes my fancy and make sure I intersperse that with quiet, restful times.

And when I am feeling REALLY good, I have friends I can text and arrange Big Nights Out with, to make the most of times when I feel well.

I'm not Pollyanna and if I let myself think too much about it, I do feel damned annoyed that my body is holding me back from saying yes to all the fun things I get invited to; I wanted to 'make up for lost time' and have lots of fun after having gotten over so much crap from my mind holding me back. Now I'm free mentally to have fun and have the people in my life I can have fun with, my body isn't letting me. Yes, that pisses me off. In fact if I think too much about it, I risk sending myself into a demented rage of tears and lamentations.

Which I do sometimes allow myself to have but most of the time I prefer to use the mental skills I honed when overcoming depression and focus on the good things.

It's no good driving myself crazy thinking "if only I didn't have this, I could have done this, that and the other." That's just going to make me feel crap emotionally on top of feeling like crap physically.

So I just think- well, I've got this, I'm dealing with it the best I can, I've got great friends and there will be other nights out, nights out that I am going to go WILD on and make the absolute MOST of.

I could have gone to the pub and spent the night sitting down, chatting; it might have distracted me from feeling crappy- but I don't feel up to even the noise today. I'm in that kind of fragile state where things like that are just 'too much'.

Besides, I have other things to look forward to and that helped make my decision to say NO to the Big Night Out even easier. Tomorrow is my Grandma's birthday, then I'm going to Lee's as usual for the weekend, and we're both invited to another couple's house for tea. I met them on New Years Eve and really enjoyed spending time with them so this is an event that I want to feel 'up' to, and if I went out tonight, even just sitting and chatting, I fear I'd tire myself out too much to enjoy myself Saturday night. So, I had to choose one or the other. And being the kind of person I am, I am GLAD that I can still make that choice- even though I could be negative about it and think 'oh woe is me if I didn't have this I could do both, my other friends could and would do both, boo hoo' I think- I'm just really glad that I can do what I can do, even though I do wish I could do more. It could be worse and I'm grateful that it isn't.

True, I've been forced into thinking this way, because if I don't I'll just be tremendously fucked off and frustrated. But it's like I tell my clients- you can't choose what shit (well, I may not put it quite that way) life gives you, but you CAN choose how you respond to it.

I'm probably writing this as a way to remind myself of that, because I fall prey to that negative thinking of feeling sorry for myself and wishing I could be a healthy person free of limitations. The fact is I'm not, and I have to accept it and work with my limitations as best I can.

I'm still coming to terms with all this. Even though I've not been well for 8 years, I'd convinced myself that there was nothing wrong with me, that I was 'just tired' that I 'just get tired a lot' and that if I exercised more and 'got used to being more active', I'd be okay.

Well, now that I've realised there's a reason for this fatigue, now that I know there IS something wrong... I keep getting these thoughts like- if it wasn't for this, what COULD life have been like? What COULD I have done/be doing? What WOULD it be like to not need to rest so much before and after events just so that I can do them? What would it be like to just be able to do everything I want to do, without having to think about 'spoons'?

But I don't want that thought because it's futile. This IS how I am and I have to deal with it.

I'm not entirely sure if this post is positive or negative... maybe a bit of both. That's kind of how I feel. I'm sad and fed up that I've got to realise I can't do everything I want to do. I'm also scared because I haven't even yet tried to work full time AND do fun things and I don't want to have to say no to fun things all the time because I'm too tired from working... I'm scared because I don't know how to adapt to this, live with it, and make the life changes I'm in the process of making (working, moving in with my boyfriend, being independent...) but I'm also determined, to find my way through (even though I wish I didn't have to) whatever shit I have to.

Thursday, 21 January 2010

I'm Miss Lead;

quiet hope hovers inside Pandora's box.

Wednesday, 20 January 2010


I have got THE most persistent itch and it's RIGHT underneath one of the electrodes and so I can't scratch it!!! This is driving me nuts and I'm not even trying to sleep yet! I forsee a restless night ahead of me tonight... :/

The nurse who fitted me was actually lovely and advised me to 'get the most' out of my monitor by doing the things that provoke symptoms.

So, I'm already knackered after having walked up numerous flights of stairs (I had to take some books back to college, and I called to see my tutor- the staff room happens to be at the top of 2 flights of stairs, plus my Mum also parked in a multi-story car-park with 20 stairs to get to the level we parked at) and tidying up/hanging up some clothes.

Tomorrow I plan to go to the bank and stand in a queue, and walk up a slight (but lengthy) incline because that's enough to make me 'symptomatic'. Then I am going to the hospital to take this back by bus- because that will involve walking to the bus stop and standing waiting- in the cold- for a bus.

Can't say I am looking forward to tomorrow but I don't ever want to have to wear one of these again and so I am doing anything and everything I can to bring on tachycardia.

Which lets face it actually, with POTS, doesn't take a lot. So okay, anything and everything to show more extreme tachycardia.

I just hope I don't wear myself out for this Big Night Out on Friday... :/

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
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...

Monday, 18 January 2010

Let us Eat Chocolate, for we have brain fog and therefore NEED it MEDICALLY.

After a week of pigging out on chocolate (that was likely thanks to my hormones doing their pre-menstrual samba) I decided to EAT HEALTHIER.

I do eat generally healthy but I am a big lover of snacks and the snacks I choose aren't usually the healthiest, unless you count Chilli Heatwave Doritos and copious Bendicks Bittermints amongst the recommended "5-a-day."

I'm doing well so far, I had a lovely salad yesterday and a shape yoghurt today. I absolutely DID NOT eat a double chocolate chip muffin for breakfast the day after I decided to EAT HEALTHIER, nor did I eat 8 Asda Chocolate Chip Cookies in a row last night.

I did plan on this EATING HEALTHIER malarky before I a) knew my Mum had bought me Asda Chocolate Chip Cookies (my favourites!) and b) found a packet of chocolate Hobnobs at the top of the cupboard.

In my defence, I read in a magazine today that chocolate actually helps increase blood flow to the brain.

Happily, this is something the brain fog did not steal from my short term memory. I will reiterate: CHOCOLATE HELPS INCREASE BLOOD FLOW TO THE BRAIN.

Made that '3 Hobnobs or 1 apple?' decision much, much easier. I went for the Hobnobs. I don't need to 'keep the Dr away' as actually, I'm looking for a good Dr the way most women search for the elusive 'Mr Right'. I do however need increased blood flow to my brain. Maybe, from now on, I'll remember how to use the remote control and not leave shopping bags unattended that are then stolen (I'm still mad about that- some mystery person will be wearing MY NEW CLOTHES that I never got to wear- I'm still convinced it was the man behind the counter in the sports shop- he had a shifty look about him when I was asking him if he'd seen a Pilot bag on the floor. At the time I suspected that he'd taken the clothes for his girlfriend but he was about my size, so perhaps the shifty look was due to him thinking "Oh god, I hope she can't see through my manly sports work attire and guess that I'm not only a thief who prays on innocent women with brain fog who put down their shopping bag and forget to pick it up, but that I'm also a TRANSVESTITE).

I'll be watching out for him at "Los Travestitos" next time I go on holiday. Wearing MY dress. And then I shall say "A-HA! I knew it! I may have brain fog but I'm also trained in body language and I KNEW you looked shifty that day! Now, give me back my dress!"

DISCLAIMER: #1 I am not responsible for the sugar rush and delusional outpourings that [too much- forgive me chocolate for I have sinned in saying that] chocolate induces in me.

#2 No transvestites were hurt in the making of this blog.

Lovely friends.

I recently told my best friends about the fact I was being tested for POTS. I wanted them to know because I've been struggling since the end of November with low energy. I think it was a case of doing too much partying before I was aware of what it was doing to me. Now I am trying to be sensible and pace myself.

I got lovely, wonderful responses from them though, which I thought I would share.


sorry to hear that! I really hope it can be treated and you will be ok.
Please don't worry, I bet all of your friends, incl me, will understand and want you to be ok! Take things slow, and you can be sure there will be enough parties etc, so there will be quite a few when you will feel fit enough to make the most of it!
Take care of yourself and don't worry about anyone being upset!

Happy New Year to you!


Sorry to hear that, thought it was weird that you left early from parties but never realised why. However, its not a problem, I am impressed at how open you are about it. Just don't push yourself, take your time, get yourself sorted and you'll be raring to go again. At least your getting sorted, thats the most important part.

Any hoo,

Have a fantastic New Year and see you in 2010.


Hey Chick x

Happy New Year!!!! and i'm so sorry to hear your news, fingers crossed for some magic medicine so you can be on top form again!! I'm sure you can still dance us all under the table either way!!

Much love to you, hopefully see you at the Dev on Tues.


Rest assured, you've still got more energy and go to more parties than most people anyway! Hope you get the right treatment soon so we can do even more partying this year :-)
See you soon, Peter

(This he said because, since joining the walking group in March, I've been to almost all the social events, LOL. I've made fantastic friends and met my boyfriend there- without these people and this group, I'd have been truly miserable! They all make living with this much, much easier than it would be if I didn't have such great people in my life!)

"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!

Thursday, 14 January 2010

How can it be that...

today my HR is 112 just leaning forward to get a drink from the table (whilst watching the recording of Slumdog Millionaire- yes, I actually recorded it right despite yesterday's tremendous brain fog) and 150 going slowly upstairs (I'm self monitoring again in the run up to my Halter test to see what, if anything, helps and what, if anything, makes it worse) and yet I feel much, much better?

I think it definitely helped that I slept better. I took a piriton- they tend to make me sleep well, I'd just forgotten that I had this option- til I was reminded when asking for advice on the DINET forum. I still do feel VERY tired, but compared to feeling VERY EXHAUSTED, very tired feels positively energised! ;)

I also took things very slowly this morning- despite numerous interruptions!
These were:

The doorbell going at 9.30am (I was still in bed, dozing). The post-people just DO NOT allow enough time for people answering the door! I mean yes, I know I am slower than 'ordinary' people and as they'd gotten me first thing whilst still in bed there was no way I was jumping up and rushing to the door (hello dizziness!) but still, you think they'd wait a few minutes at least! By the time I made it downstairs they'd given the parcel to my next door neighbour.

The doorbell going when I was on the phone talking the my Grandma. It was Interflora with a bunch of flowers for my Mum from a couple who's purse she found (with £500 in it!) in the villa we stayed in at Christmas. They'd left it there in AUGUST and no one had found it, despite them asking the cleaners to check!!! Obviously, the flowers were to say thank you to my Mum for being a decent, honest type and returning it.

After ringing my Grandma again to tell her about the flowers the doorbell went AGAIN- this time it was my neighbour bringing the parcel.

I had my dinner at 1pm (cuppa soup) and then I braved the great (icy) outdoors to fetch some provisions- Lucozade, pretzels, sea salted cashews with black pepper (sound yummy!), twiglets and piriton. The former are for days like yesterday during which I felt like I could NOT get hydrated no matter how much I drank. The lucozade can also give much needed energy.

The piritons, I am going to take for 10 consecutive evenings to see if they help me out of this slump of low energy. After that I'll see how I feel. I might take them for a couple of weeks to ensure good quality sleep for a while and then stop and just take them on Saturday nights when I stay at my boyfriend's (I never sleep well when I sleep away from home, unless I take piriton!).

I feel that much better from ONE good night's sleep that I'm hopeful within a couple of weeks- even despite weekend social events- I should start to feel a bit more 'normal'.

I also rang college to renew my library books and was told there's no class tonight... so I passed the message on to my college buddies- but T. messaged me on facebook saying she rang the tutor to check and it is on...

I haven't been on facebook.

Seriously though, I wouldn't be going in anyway. Yes, today is a much better day, but I haven't got the energy or the concentration for college class. The good news is, I'm ahead with my work because whilst I was snowed in last week, I managed to write up two assignments. This could have contributed to me being so tired this week mind (it seems like every time I spend a lot of time on college work I have a big dip in my energy and my symptoms worsen) but it takes the pressure and stress off so I'm glad I did it.

Things are looking up! :-)

Wednesday, 13 January 2010

My Dad can be SO horrible!

I've had an awful potsy day today. Bad dizziness, exhaustion and TERRIBLE brain fog. The latter is SO frustrating for me; before all this I was a straight A student who got a degree and could remember anything and everything and spout off all kinds of knowledge. Lately, I am forgetting what I am saying in the middle of sentences, walking into a room and forgetting why I'm there, forgetting how to do simple things... the list would go on, if I could remember it!

So this evening I wanted to set the dvd to record something. I haven't done this for a couple of years and so naturally, I couldn't remember what to do. What was worse though was I couldn't even remember the basic things like what button made the TV switch from TV screen to DVD. I KNEW there WAS a button, but I was just sitting starring at the remote for ages feeling this frustration welling up inside of me because I couldn't remember or find the button. I tried pressing a few but they were wrong. What was making it worse was my Dad was in the room waiting for me to do it whilst watching some police camera action type show, so there were these flashing lights and sirens really bothering me, plus my Dad is SUPER critical, so he starts on with the criticisms, telling me how I'm pointing the remote wrong and I should do this not that, blah blah blah... then he starts shouting at me because he was 'trying to watch the bloody telly' and I ask him to please NOT shout at me. But not only does he not bother to listen, he stands up shouting over me and ends his tirade with the accusation 'you've been a fart all day!'

Well gee, I know THAT already. But I'd rather be a fart than an incompassionate ranting moron.

He went off having a tantrum, slamming doors and finally left me to it.

Once he was gone, I managed to figure out how to set the dvd- albeit slowly with a couple more 'trial and error' mistakes.

In the past, an outburst like that would have upset me but currently all I feel is- fine, whatever. Have a stupid tantrum and shout at me, that's just great. I feel that shitty as it is, it doesn't even impact on me. Maybe coz I've learned not to care what he thinks or how he treats me, as this isn't anything new.


Mourning who I could have been... celebrating who I AM

Written on December 17th originally. Reposted here.

It seems strange. I know I’ve been ‘not right’ health wise for years, but it’s like it’s finally hit me. I’d learnt to live with it and pretend everything was fine but this year has made me realise, it’s not fine. I can’t push myself and act like I am ‘normal’ when I’m not.
So I’m sad, for the loss of that person who I could have been. If I hadn’t gotten ‘this’. I could have gone out dancing two nights in a row. I could have walked further, maybe even still gone running. I wouldn’t have had pain, depression, anxiety. My ambition wouldn’t have died along with many brain cells, I’d have stayed bright, sharp and clever and gone on to do great things and make a living for myself instead of being dependent on others.
I’m sad, upset and sorry that I didn’t get to be that person.
Now at least, I am aware of my limitations and can begin to mould my life by working around them.
I’m still not sure who to tell and how many to tell. I know I don’t have the diagnosis yet but I don’t feel I need it right now to know, I’ve got dysautonomia. My body is telling me in the pain in my chest, muscles and joints, my pounding heart every time I try to do normal things other than sitting, my exhaustion, my constant thirst, the headaches and the ‘overactive bladder’.
I feel I need the support of my friends but I am afraid also of them treating me differently. I don’t want them to. I want them to know so that they understand why sometimes I might not be able to go out even if I really want to, or why I can’t do the longer or steeper walks. But I don’t want them to ask me if I’m okay all the time or remind me constantly of my limitations by treating me differently.
I am just going to tell my closest friends, those I associate with most, just not sure when.
I know they’ll support me and be kind and good. I suppose once I tell them I can just ask them to treat me as normal, and that I’ll tell them if I need/want ‘help’ in any way.
I feel very sad and emotional today. I think all the stress of the past few weeks with these appointments and tests and keeping it mostly to myself and then finally being heard and getting the referral has taken its toll, on top of already feeling like cack. Now that I ‘know’ finally, what is wrong… I have to face up to it and it’s not easy, even though in many ways it’s a relief to make sense of things.
It’s so hard to get used to these limitations. See, I know I both want and need a shower, but I don’t feel I have enough energy to stand in there and wash my hair, then dry it after… but I also know that I feel dreadful in the mornings and need to walk to the Drs, so I’m probably better off doing it tonight and then going to bed, and saving doing less tomorrow morning if I can. I really am having to take care of my spoons more lately. (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf) They seem more few and precious.
But, rather than being sad about the person I’ve lost, didn’t get to be… I am going to make the most of the person I AM. It’s not what life hands us that makes life good or bad, it’s how we deal with it. So I am going to deal with this as positively as I can, being thankful for the many wonderful things I DO have, and the many great people who I am blessed with knowing who make it easier for me when I’m sad, or tired, or just plain fed up; as well as making life fun and enjoyable and bringing me shared happy times!
I’m also going to make sure that I take better care of myself, and my body. No more pushing too hard, trying to be ‘normal’. No more wasting energy on people or things that aren’t worth it. I will fill my life with love and light only, and keep out as much negativity as I can.
You know, pain really is a great teacher. Pain of any kind, physical or emotional. It forces you to realise how many blessings you really do have, when you take the time to notice them. Even when times are tough, when you wonder ‘why me?’ and wish the pains away. You realise in some ways, you’re lucky. You’ve been ‘awakened’. You don’t take things for granted anymore.
I do acknowledge that it’s not always like that. I was sitting on my bedroom floor an hour before, crying with exhaustion and frustration. Would I rather be completely healthy and ‘unawakened’, taking it all for granted? Maybe. But I’m not, so I choose to make the best of this however I can, and if that means being Polly-freakin’-anna, then so be it! If it also means being a misery-guts at times and getting all ‘woe-is-me!’ then so be that too!! I’ll do whatever I can to get by. I just know that I feel better when I force myself (because yes, sometimes I have to FORCE it!) to look on the bright side and find the positives.
I find something really magical in the human spirit that I really love. When I get low, when things get hard and I feel sad, I look out into the world and I see a lot of love out there. It makes me feel better. There are so many good, kind, thoughtful people out there. So much beauty too. The world really is a special place. Being ‘this way’ has made me more compassionate and caring, that’s for sure. There’s a lot of love to have and to give, if you look at the world in the right way. I’m glad I can, and that I do. Because when things get bad and sad, there’s always that little glimmer, that spark, that makes it better again.
And hey, it’s gotten me writing from the heart again too, which feels good and healing.
So, thank you for this life, even with its hardships and limitations. I truly am grateful to be here, experiencing this wonderful world. Thank you, thank you, thank you.