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

Tuesday, 23 February 2010

RESULT! Humour with a little dash of cheekiness pays off.

Ah, it's so refreshing to find out that not ALL companies/people are sticklers to rules, regulations and bureaucracy! (Gah that is the one word I ALWAYS struggle to spell- I can spell diarrhoea [remember I'm English- we have different spellings to the U.S lol] and even onomatopoeia with no trouble, but bureaucracy?! ALWAYS struggle- so thanks spellchecker for sorting THAT one out for me!).

I got my reply from So Natural, and given that they have been so kind as to agree to my request to combine my items into one parcel AND send me the bath salts I requested DESPITE that making THEM out of pocket (due to my postage costs being higher when combined) I think it's only fair and right that I recommend them as a JOLLY GOOD COMPANY. You gotta love a company that not only sell useful products (got friends with dysauto? Why not buy a salt gift set? Pretty, neat and healthy too!) but are kind, decent and helpful people too! So, check the site out
SO Natural Himalayan Crystal Salt Products

Here's the email they sent in reply to the email I sent them yesterday:

Hi Laura

Thank you for your email which we thoroughly enjoyed. We noticed what you had done (ie. placing 2 orders). With the addition of the jar of sole rocks (your 2nd order) this took the postage from £4.99 to £6.99 due to the weight of the parcel, meaning you overpaid by £2.99. However we have enclosed in your parcel the bath salts you requested so that you are not out of pocket. Hope you enjoy your products.

Kind regards

Natalie Gray

So Natural

Tel: 01303 248238

Mob: 07711 667545



That really brightened my day did that, and has given me a good feeling! :-) I can't wait for my salty goodness to arrive!

Monday, 22 February 2010

How much might a bit of humour allow one to 'get away' with things...

I thought this was worth a try... I just ordered some salt products from a company called Himalayan Crystal Salts. After placing my order, I noticed a tantalising offer on a product I hadn't before seen and so decided to get it, but then discovered I'd have to pay for the postage twice. So I thought, well I'll email them and ask if they wouldn't mind grouping my two orders together and sending me a product to make up the cost of overpaying for postage... if they can't all they can do is say no and I'll just have to make sure I'm not so dozy next time!


My name is Laura and I suffer with a condition known as "being dozy" which translates sometimes into making unfortunate mistakes. When I make mistakes that cost money, it might seem insignificant but when you add up the cost of these mistakes over the course of a year, I pay a high price for my "being dozy".

I have recently (within this past half an hour) placed TWO orders with you when I could have just placed one, thanks to this "being dozy". I was wondering (hopefully) whether you might be kind enough as to place these two orders into one for me. If this is possible it will mean that I've payed an extra £4.99 for the postage if they were coming to me separately, so I'd like to be cheeky enough (my dear Mum would call it 'assertive) to ask whether you'd mind sending me some delightful bath salts also (product code HCS030 priced at £3.99) so then my misfortune at "being dozy" will only amount to £1 of overpayment and that I can live with and am happy to pay towards your company in the light of your kindness.

The order details of my second order are as follows: 258802378-92-25-113-19. Unfortunately due to this "being dozy" malarky I do not have the first order details.

If this is altogether too presumptuous and cheeky of me to ask, I will take my "being dozy" on the chin and hope that next time I will be more on the ball. And if anyone tells you to take this email with a large pinch of salt, please just ignore them, I'm sure they are only trying to be funny.

Thanks and good wishes,


Thursday, 18 February 2010


There's something about me today. Something akin to "the old Laura" that I miss so much. Maybe it's the CoQ10 giving me some energy- some 'spark' back, I don't know. All I know is the beginning of the week I was tired, miserable and depressed. Now, I'm still tired but I'm feeling chirpy again. I'm planning things that pretty much verge on GIVING my spoons away. But I'm hoping that I'll be okay.

I have this philosophy lately- life is short. So I'm trying to squeeze as much out of it as I can, like juicing an orange. Seeking the zest out of life!

I phoned Lee before and was all animated and cheerful on the phone. I'm usually breathless and falling asleep- not out of boredom by any means, but due to fatigue/dizziness. I actually got a text later from him thanking me for calling and saying how nice it was to chat and laugh.

It makes a DIFFERENCE, having some spark. I want to keep it.

Plus, I even made up a new word in the hopes of cheering up a friend- fanspanglydastic! I used to make up fun and silly words all the time, just off bat, without making any effort. I was funny, witty, sparkly, I had penache. Joie de Vivre. I was 'loopy' Laura. As in wacky, off beat, fun to be around.

I've missed being that way. So, if a supplement is indeed helping me get that back... I'm sold. Heck, I'm in LOVE.

I may be tired, have headache, and feel chronically dehydrated as usual (the feeling of chronic dehydration is my daily life despite drinking approx 4+ litres each day) but I have a little bit of a spark of the 'old me'. Maybe this could be the start of something... maybe it's just a good day. Even if it's 'only' the latter, I'm happy of it. Even if I only ever have glimpses of this, I'm glad of them.

Of course, I want more. But if I don't GET more... I'm glad I had this little spark.

Wednesday, 17 February 2010

Vastly improved since this morning! :-)

I couldn't understand why, when I had to go out for an appointment (more on that later) I started feeling BETTER than when I was sitting here in the cosiest room in the house. Then I got back home and saw the bottle of tablets which triggered my memory- I took a CoQ-10. I am now in love with this little pill and am going to source it out in bulk. See, I haven't taken it EVERY day (I read that it can cause insomnia so on days when I've gotten up late- [read: most days this week] I decided not to bother taking it) but today I felt SO bad I thought I'd give it a try, and so took one at around 12pm. By 2.30pm I was feeling much better. I'm still really tired and a bit woozy but nothing like as bad as this morning.

Now all I need to do is get my bladder back to manageable and I'll be... managing. I'm trying this new tablet for it after being advised to see if stopping trospium would help with the tachycardia at all, but so far I'd rather be on the trospium as the new pill ISN'T working and having an overactive bladder is the most frustating and annoying and god, even DEPRESSING thing. I'll go to the toilet, empty my bladder and 10 minutes later I need to go again, 15 minutes after that, once again, ad infinitum.

I'm going to double up the dose tonight (safe to do as they come in 15mg tablets and I'm taking 7.5 at the moment) and see if that helps and if not... I'm sticking with trospium, even if it can worsen tachycardia. Because like the cardiologist said (not that I am listening to him as he was crap but this was the one sensible, supportive thing he said) it's a case of weighing up the pros and cons and deciding what I can live with. I'm okay with tachycardia, heck, until I measured my heart rate I wasn't even aware I HAD it. (I mean, I'd notice my heart thumping when I climbed a hill or when I was stressed about something but I didn't realise it was abnormally fast). I am NOT okay with needing the toilet 2-4 times per hour.

However, I plan to be off the medication for my tilt test so it's as 'true' a test as can be. So I'm dreading the weeks leading up to it, because managing an unmedicated overactive bladder is VERY trying. :/

Now, back to that aforementioned appointment. It was a refreshing change to be in a waiting room surrounded by PEOPLE MY OWN AGE, or YOUNGER. I am so used to being around (much) older people (urology and cardiology) for appointments. It was also highly entertaining, as I was in the family planning clinic and there were a group of very vocal teenage girls all talking about who's done what with who and how so-and-so is a complete slapper etc etc.

My appointment went well and gave me hope as a couple of problems I've been having look like being just temporary hormonal adjustments to my new contraceptive and once that's settled down, all should be well. Relief. I wish all my appointments were as entertaining and uplifting- for once I walked out of a hospital type setting feeling good and happy. I stopped by the chemist on the way out and bought myself some Nytol (which contains the same active ingredient as Benadryl in the U.S). I now feel much more relaxed about getting some sleep on a Saturday night and feel, with the help of the Nytol and the CoQ10, I should be able to make it to these upcoming social events- and be in a better mood during the week too, instead of being so wiped out and cranky.

I'm now going to look up some gluten free cookbooks because I tried re-introducing wheat into my diet yesterday in the form of pancakes and my tummy has NOT been very happy with me about that today. What can I say, I'm a pleasure seeking hedonist with masochistic tendencies.

I don't know how I managed to eat wheat products every day, for so long, without realising my tummy had 'issues' with them. Nothing was diagnosed by a Dr, I had this wacky alternative health test done (I cannot right now remember its name) where I had to hold these mental rods that sent the chemical vibration of a vast array of foods and substances through me and depending on how my body reacted, the results would show what systems of my body were struggling to function correctly. My top food intolerance came out as being wheat flour so I cut it out of my diet (thinking temporarily) and any time I tried to re-introduce it, I'd get awful stomach cramps and IBS type symptoms. I am okay if I eat it in small quantities, such as in soups (wheat flour is added to so many things!) but if I eat anything like bread, pizza or pasta, tummy is not happy.


Oh dear. My Mum came in to the room to tell me I've booked 2 tickets TO Newcastle, but only ONE coming BACK. I wasn't 'with it' that day and had asked her to stay in the room with me through the process, but she'd gone out to do some hoovering, thinking I'd be capable of making the second booking myself. Obviously, I was not and was correct in thinking I needed 'babysitting' for this task.

It's incredibly frustrating and quite scary, the magnitude of how dozy I can be... it frightens me because I don't know how I am ever going to cope at being independent. The brain fog makes it so easy to cock up even the simplest of things... :/

Ahhh, so cozy!

If there's one thing that really makes me miserable, it is being COLD. Unfortunately, I seem to feel the cold much more easily these days. When one of my clients came to see me wearing this adorably soft fleece (it was one of those things that looks so nice you just want to touch it, and so I did- with her permission of course!) It felt so soft and lovely I just HAD to ask her where she got it. She told me the brand name, so I searched it out online and managed to get myself one. It came today and I LOVE it. Not only is it lovely and warm and comfortable, it is also sooooo soft. I love it so much I am thinking of getting one in blue too. I'll take a picture later and put it up so you can see it.

Paying for Yesterday with symptoms today...

I haven't done any BP or standing tests today because I'm not feeling up to it. I did too much upright stuff yesterday and am paying for it today with chest pain, exhaustedness and a body that aches all over.

I really NEED to do something about Saturday nights. I stay at my boyfriends every Saturday night but I CAN'T SLEEP. It's a combination of factors- I'm so used to sleeping alone (and am a light sleeper anyway and it's always taken me longer than average to fall asleep) that I can't get used to him being there, so every time he moves, it actually makes me jump, which makes my heart race, so then I feel like I'm constantly not relaxed. Also, we tend to share some wine and I don't think this helps because I seem to get resting tachycardia and bad circulation more often than not, so now I'm thinking I'll stop drinking the wine and see if I sleep better. Only not this weekend as we are having guests round for a meal so I'm going to drink a little bit, I think by the time they leave and we go to bed the effects should have worn off- I tend to be okay drinking a little if I'm going to be going to bed a few hours later.

It is however starting to stress me (and potsies know how that's not good!) that I sleep so poorly, if at all, every Saturday because it is taking a huge toll on me during the week. This last particular Saturday I barely slept at all because my tachycardia and circulation were so bad, and I've been exhausted and in a low mood ever since. I also have a lot of social events coming up that I WANT to do- going out for a friend's birthday, going out for the last time with Margit before her surgery, and these are both on Friday nights... I really cannot go out late two Friday nights in a row AND have a sleepless Saturday night- I already feel DREADFUL!

I might even go to the Dr and ask for a sleeping tablet I can just take at the weekend. I believe missing hours and hours of sleep every weekend is adding to the worsening of my symptoms and mood. I need to find a way to get my sleep and still be able to see my boyfriend!!

Anyways, enough of that- I'll talk about what I did yesterday. In the morning it was beautiful and sunny so I went with my parents to visit a local old castle and took pictures. I had to climb a lot of stairs to get to the top, which I think has added to my achyness today. I rested most of the afternoon and then in the evening went to a friends house for a pancake party. That involved a lot of standing up in the kitchen, chatting. I don't feel bad when I stand, which is why it took me SO long to look into POTS when it was suggested to me by a friend I might have it. I just end up feeling bad/suffering for it afterwards, so used to wonder why I'd always seem to get/be so much more tired after things than friends and family.

The party was good fun anyway. I know this is a pretty boring, soulless update but I'm too tired to go into details so I'll just leave it at that now.

Monday, 15 February 2010

An interesting (well, for me) observation...

The more I have looked into POTS, the more many seemingly unrelated and senseless things in my life MAKE SENSE.

Earlier today, after I did my 10 minute standing test, I really needed a no2. (Sorry if that's TMI for some people!). It occurred to me just now that this always happens when I go shopping. I'd always assumed that for some strange reason, I got 'overly excited' about looking for new clothes (it would never happen in book shops but then I have a reason which I'll get on to) and that triggered off an IBS type response. The number of times I've walked into a shop and started browsing only to think damn, I need to find the toilets now!

Well, since it happened this morning after standing for a while I wonder if it's nothing to do with shopping (or excitement) at ALL but just a bodily reaction to standing in and of itself. I'm not at the moment clever, savvy or 'on the ball' enough to be able to work out why that particular mechanism could be triggered by orthostatic intolerance, but I bet there's a reason it could be.

So, even my needing to poop whilst shopping now (kinda) makes sense!!!

This evening's tests: (done after a meal BECAUSE I was feeling tachycardic)

BP sitting 99/66 Standing 102/75
Heart rate supine: 80
Standing 1 min = 123
Standing 2 mins= 122
Standing 5 mins= 129

EDIT: I forgot that I was supposed to write about my theory on why I don't need to poop when I'm browsing in bookstores. Well, because my very favourite thing to do in a bookstore is crouch down, or even better sit on the floor, while looking through various book choices before deciding on which to get! Therefore, without the orthostatic intolerance, my bowels do not need to move and that means I do not need to 'go' and can also not move but stay where I am, happy with my nose buried in a book.


My appointment for my tests (which could well involve the tilt test at last too- they told me on the phone if it's deemed necessary then they do it then and there on the day of your first appointment) came through- Friday 9th April- 7 weeks away and the day before I go on holiday with my parents and Grandma for Easter. So, by that holiday, I could finally have a diagnosis!

I'm pretty excited about it.


I decided to get some heart rate and BP baselines to take to show my specialist when I get the appointment, because symptoms can vary so much from day to day and even hour to hour!

Take this for example. On Friday, I felt my most unsymptomatic EVER whilst standing. It felt NORMAL (and I hadn't realised how 'abnormal' it really feels, since that abnormal has become my normal and who knows how long it has been for).

Supine HR was 74
Standing 1 min = 86 (!!)
Standing 3 mins= 93
Standing 5 mins= 87

BP (sitting) was 98/67 in the morning and 114/76 in the evening.

This morning:

Supine HR was 63
Standing 1 min = 98
Standing 3 mins= 102
Standing 5 mins= 105
Standing 10mins= 126

BP was 82/64 supine, 95/69 sitting and 99/80 standing (after 1 minute).
After the ten minute stand, BP was 103/75.

I'm filling these all in in a little denim notebook that I can take with me. It's also interesting for ME to see how my symptoms vary.

Saturday, 13 February 2010

Filled with love- Today's Lovely Daily Motivator :-)

You are filled with love that you long to express. And yet all too often you hold it inside.

The times when you feel most fully alive are the times when you act based on love. The greatest value you have to give is the value that comes from your love.

Though you may fear that it will make you vulnerable, love actually gives you great strength. Let yourself love, and let your love flow.

Think of the people you love, the values you love, the things you love to do and the places you love to be. All that love will pull you and guide you toward where you truly belong.

Love challenges you to be who you most authentically are. Love enables you and compels you to find and to give the very best that you have.

Love is exceedingly difficult and unspeakably beautiful all at once. Live in love, and you truly live.

-- Ralph Marston

Read more: http://greatday.com/index.html#ixzz0fPbc60Kz

Friday, 12 February 2010

I got my downloads!

I have to laugh about this- the very kind people at hypnosis downloads have sent me- not just the downloads that I mistakenly deleted in a brain foggy moment but... EVERY SINGLE DOWNLOAD I HAVE DOWNLOADED FROM THEM!

That was 18 emails of 2-4 downloads in each!!!

That's because dozily, I didn't specify which ones I had lost as I wrote my request at the top of my confirmation email with the original link in it, but I don't think that email says which downloads there are, it just links you to them and the link had expired.

How kind and helpful, for the person to search out all the downloads and send me each one! I'm blown away and it has cheered me up on this day I have woken up with the same headache as yesterday and now pain in my eyes, cheeks and nose too (it's all sinus related, I am now in the throes of Lee's bloody cold!).

It just shows there are still many nice, kind and helpful people in the world who are prepared to go out of their way to help someone else.

I can highly recommend them if anyone wants to buy any hypnosis relaxation mp3s- they are great and they have loads to choose from. www.hypnosisdownloads.com. I'm recommending them for great customer service (this isn't the first time I've mucked up and they've helped me out) and great products. :-)

Thursday, 11 February 2010

When brain fog stops being a joke...

Usually I can laugh it off and joke about it, but tonight I'm really pissed off and fed up! I logged on the computer to synch my ipod because a couple of days ago it said it couldn't find two hypnosis files I'd downloaded.

Well. I realise now that I downloaded them on to my memory stick whilst connected to the internet on my laptop, because my PC went through a period of not displaying any webpages for months (it has done it before and usually rectifies itself with time so I was just using my laptop until it did so, rather than paying for a technician to come out like I had to the first time).

So I found my memory stick(s) because of course I couldn't remember WHICH one I put the files on.

But they aren't on either.

The other day, my most used stick was full and I needed to save some college work on to it, so I deleted a load of 'unnecessary' files. I believe, in my supreme numptyness, that I have deleted the hypnosis files. I bought them for myself for meditation purposes and had listened to them a few times on my ipod. However, when I plugged my ipod into the PC, it got re-synched and thus deleted the files (because they are not located on this computer). I didn't know they did that.

So, because I have deleted the original source files and now my ipod doesn't have them, I've lost them!! :( I came online purposely to get them back on my ipod because I felt in need of the relaxation and positive mental boost. Instead, I get all this messing about trying to find the files and this frustration at realising what I have stupidly gone and done.

My only hope now is the people at hypnosis downloads will be kind, since I am an avid customer (I buy scripts regularly for clients as well as having downloaded various mp3s for myself) and re-link me to the downloads, since I found the original order email and tried clicking the link, which had expired. My last resort has been to email them, explaining that I've somehow 'lost' the files, and asking if they could possibly please send me a link to them again. Actually, I'm quite hopeful they will because I once accidentally downloaded some mp3s instead of scripts and they let me download the scripts as well as the mp3s (when I explained my error) which is actually giving me more than what I've paid for, whereas this, this is just giving me back what I have already paid for, and lost.


I STILL have the headache too. It feels like I am finally succumbing to Lee's cold, because all my sinuses hurt too.

Taking my fed-up-numptyness to bed now. Fingers crossed Roger and Mark are understanding and send me that link...

Tired but accomplished

I got my unit 17 assignment written up yesterday and I managed to make minor adjustments to the assignment 12 that I handed in and had checked. I couldn't really do all that much with that because 1. My brain is refusing to co-operate with me and actually remember any of the policies and procedures I'm supposed to outline and 2.I was so close to the word limit I couldn't say much anyway!

I felt good today but I have this AWFUL headache that's come on gradually more and more. Nurofen time!!! (I always get really tired after I've worked on an assignment lately, so it's good that I've only one left to do!).

I am going to ring up the chemist and see if they have my new bladder meds yet. I'm trying a new one (recommended me by a potsie friend who also has overactive bladder!) because the cardio I saw said my current med could be adding to my tachycardia. I certainly noticed that when I first started taking it, I'd be way dizzier in a morning- but I NEED *something* because my OAB is the worst problem I suffer with and without medication for it, I can't leave the house without making myself dehydrated so that I can be sure not to get caught needing the loo.

I've been questioning future plans in my head a lot lately. Basically, I was considering getting a full time job in September (next school year) but I've decided to put that on hold for a while and concentrate on upping my fitness levels if I can.
I enjoy working the random hours I do and choosing my own hours. It won't earn me enough to move out of my parents but I can always look to getting a job in a school when the time comes to do that, which won't be this year. So THIS year, I can focus on my health, my fitness, learning to cook finally (I can actually cook but never get chance to practice because my Dad is so impatient/controlling and the kitchen is his domain!! And so I forget all the things I learnt how to cook coz I never get to practice them!) and maybe finishing the book I started writing in 2007.

I've always loved writing and can be good at it when I put my mind to it. I used to write novels for pleasure when I was in school. Whether or not I'd actually get one published is a whole different matter, but I won't know if I don't try and I'd regret not trying while I have the chance. So while I'm still here with no financial burdens, I'm going to have a go at doing that once I've finished this diploma in April.

ADDED LATER: They had my tablets so I walked to the chemist, then I had to lie down and have a sleep because I felt EXHAUSTED! I can't get rid of this headache either. It's from writing the assignment, having to sit at the computer typing gives me neck pain that causes tension headaches too- so I've booked a massage for next week, I just need them to ring back tomorrow to confirm it's okay as the people at the health store have to check with the masseur as she only goes in certain days. All being well, she can fit me in Monday. I see her about every 6 weeks, it's a necessity because without it I get the worst headaches and pain. The massage loosens up my muscles so I can function.

Tomorrow I'm only working 1-2 so that will be nice, hopefully I'll feel better. I'd really like to have a go on my stepper if I do!

I'm really keen to get writing again ('proper' stuff, not simply inane blogging) so I can't wait to finish my diploma. I don't have enough spoons to do it before then, but once all that's done with, I will have more time to focus on being creative and finishing the book I started and/or starting something new. I need some ideas!! I keep thinking it'd be good to write a story about someone with dysautonomia, but don't have any concrete ideas as yet as to how to make it interesting. Oh well, after April I have plenty of time to 'play' around with ideas.

My headache is STILL awful and just won't go away!

Tuesday, 9 February 2010

Life gets eventful...

My photo book from shutterfly came today- it's so nice that I'm going to make one for the Summer Ball photos and the Rome photos. The Rome photos I haven't organised in a book yet because there were still many more to upload, so while they were doing so, I went to the shops to put some money in the bank and choose a valentines card for Lee. When I got home, I locked the door and came upstairs. GOD knows where I've put the key (I had many brain fog moments today- I'd forgotten to sign my paying in slip for the bank, when I bought my card I took my change and forgot to pick up the card!!!)- I saw from the study window that there was a UPS van parked outside so I went charging back downstairs and the key wasn't hung up so I had to get the guy to come round the side of the house.

How lucky, if I'd been just slightly later home I'd have missed the delivery!!

It was my "air stepper exerciser"- which I've bought for the purpose of improving the muscle tone in my legs, which should improve the blood vessels' constriction and so pump my blood around my body more effectively, which in time could help with the tachycarida... exercising if you can is meant to be good for POTS so that's what I am trying to do! The benefit of it is, I can do it for a few minutes each day in the comfort of home, whilst measuring my heart rate and aiming to keep it reasonable.

I am at the moment fighting off Lee's cold germs :( My throat has started really hurting today, despite me taking vitamin C and goldenseal supplements to try and ward off the virus. It's typical that as soon as I start feeling like some energy is coming back, I go and get a bloody cold!! I also have to go into college tomorrow for a tutorial with Lesley as there are 'a few adjustments' that need to be made to my assignment. Crap, more work!! :( Still, just a few months to go, but I am finding these last months really hard as I've had enough and just want to be done with it!

I plan on writing up assignment 17 tomorrow, then I might be able to take that in and get her to read through that as well, then I can bring both home and work on whatever 'adjustments' are needed, then I only have unit 8 left to do. That will take about a month though as it's one of those bloody portfolios where you have to gather, research and analyse lots of info. Oh I'll just be SO GLAD when I've done it and can have a break!!!!

I had a GREAT weekend this weekend. Me and Lee had the most lovely, relaxed evening of contentment and were both in really happy spirits. We had a lovely walk Sunday too, which I really enjoyed because my shaky, weak feeling has finally gone!!

I also went out Friday night to the pub to meet friends. It was the first time I'd seen them all this year, and the first time they'd seen me since I decided to explain about me having T&T- Tests and Tachycardia. I was touched my how genuinely concerned and interested they were. I managed to dance a little (though got tired very quickly which is unusual for me when it comes to dancing) but the best, most fun part of the night was when we were all sat in the quieter pub, chatting and having a laugh. I'm advertising the next social event, first Friday in March, going to start it in that quiet pub (so I think more people might turn up as it's nice for chatting and relaxing) and then the ones that want to (myself included as I am being optimistic that by then I will be feeling a lot better) are going to go to Flares for some dancing, and possibly the Rewind Disco at Plug (but I will have to feel great if we go there because there aren't many opportunities to sit and rest). I'm really looking forward to it, for one, starting off in a quieter, more civilised pub will make a really nice change compared to how we've gone about things the past few months- and it will mean Lee can come along too (he avoids noisy places due to tinnitus) and for another, after the chatting and mingling and catching up part, me, Margit, Chris, Phil, Peter, Barbara and anyone else who wants to join can go and have a bit of a disco.

I'd got the date of Margit's surgery wrong so this will be our last dance before she has that done. I don't know what's with me lately but I am incapable of putting certain things in my diary correctly- I had a client on the phone with me last week who told me he wanted booking in in 3 weeks time after a certain date, and the place I turned to in my diary was 15 weeks after the date; I don't know how I managed that but I couldn't exactly say to him "I'm sorry you're calling me at a bad time, I'm very tired and suffering with brain fog." THAT doesn't look good for business. So I just laughed it off and he made a joke that he'd have to be hypnotising ME! (Since I didn't just get the 15 weeks thing wrong either, he had to call me back and change the second date I booked him in for, because he'd requested the first Wednesday after he returned from his 3 week holiday, but then when I said the date he said it was someone's birthday, which I interpreted to mean he couldn't make that date and so I suggested the Friday and he agreed, then rang me back and said he wanted Wednesday as he works Fridays... and that he'd been saying it was someone's birthday and that he'd thus *remember* the date, not that he couldn't attend it! So in my foggy state, I managed to confuse HIM too! lol). Honestly, it took like 10 minutes and him having to call me back twice (bad reception and brain fog) and me having to call him back once (bad reception) before we got it sorted!

I hope I can get rid of this sore throat/cold thing because I really don't want to crash again when I'm starting to pick up...

Wednesday, 3 February 2010


I've had a nicely calm and strangely contented day today, a day during which I've felt very tired but accepting of it.

I had yesterday what was for me a busy day, and as I still haven't recovered from the 5 mile walk on Sunday (which I enjoyed immensly), I think that's why I am so tired today. I had 3 clients and a trip to the Doctors. My GP was wonderful though, put me at ease, commended me for seeking a second opinion and praised me for being so proactive about my health. I'm now waiting for an appointment with Julia Newton in Newcastle, to be properly tested for POTS.

I'm enjoying the results I'm getting with clients at the moment. I love my job and it fits in well with days like this when I have little energy. I'm a hypnotherapist so I relax people and help them better their lives. They come to me and I sit in my chair in the warm conservatory with the birds flitting about the garden, relaxing them* and giving them words of encouragement and self improvement.
*My clients that is, not the birds.

I had an odd moment today though. I've got this one client who I have a real laugh with, yet I am also jealous of her because, I guess in a way she seems like "the Laura I could have been". She goes running and does all this active stuff like what I used to do. Even though I'm grateful for what I can do, I still miss the things I can't. So I had this odd moment when she was telling me a story about Gok Wan making over this blind lady and the lady saying how is was a "pissing shame" she hadn't met him 10 years ago. I don't know why as she was saying this I got this feeling, but I felt quite tearful- and not because I was inspired by good old Gok or even by my own skill to make other people feel better, but because I was feeling a bit sorry for myself.

It comes and goes at the strangest most random times. I feel it more lately because I have a very fit and active boyfriend and friends. I often feel like an alien amongst them, some small strange floundering thing trying to keep up with the normal pace of life. Then feeling sad when I am reminded in a variety of different ways that I can't.

I have such paradoxical feelings though because even as I am sad about what I don't have and can't do, I'm very thankful for what I do have and can do, and I also have a very strong mind that's determined not to dwell too long on the negative, even if I am aware of it. The fact that I can and do help other people live more fulfilling lives has always been very rewarding and uplifting, but at the moment feels bittersweet. I do for them what I can't do for myself because now it's not my mind but my body that's betrayed me.

I find comfort in the words of Milton Erickson, who said (this isn't verbatim) that it's important to always have something to look forward to, no matter how small that might seem to others.

I always look forward to seeing my boyfriend at the weekend, no matter how tired and/or ill I've been in the week.
I look forward to Big Nights Out because I feel free and happy and can forget.
I ALWAYS look forward to Spring and Summer. To the return of the House Martins and their cheerful twitters in the bright blue sky. To laying on the warm grass, watching white fluffly clouds. Sunshine. Birdsong. Flowers.

It's strange. Finally finding out there is something physical going wrong with me as I'd always thought has made me feel relieved and pleased to have some answers, to know there are REASONS for why I've felt the way I do, but it's also made me feel sad and trapped because I can't be sure if I'll ever be free of it. People who mean well say things like "When you get it sorted" like I'm just some broken down old car that's failed its MOT but with a few new parts and some fuel I'll be good as new. My mental reaction to that is, what if I never am? Will you still want to cruise around the countryside with me then, or will you be wanting to upgrade me for a new, more reliable model?

There's a lot I am coming to terms with. I don't really know what's more scary, being afraid of the unknown or being afraid of what you now know.

The thing is, I feel strong enough to handle this if my friends and loved ones stick by me. But I'm afraid that they may not. Who wants a rusty old clanger of a car when they could have a brand new, top of the range model? Stupid analogy but still, it's a big fear that I have, because I'm new to all this and THEY are new to all this. What if they don't stick around? Then I'll be alone again AND ill.

It's hard not to think What If but I know I shouldn't. I need to cultivate living in the moment. Don't concern myself or waste my energy worrying about scary future scenarios that may not ever happen. So why am I doing that so much lately?

Obviously, under my 'calm and contented' sleepyness, there lies a whole turmoil of confused emotion. Fear, loss, uncertainty, hope...

Yet still, I feel strangely calm...

It's weird. So much has changed in my life. Who am I now? Who am I going to be?

I might not be 'normal' but I am well off...

I don't want this blog to be ALL about POTS or whatever it is that's 'wrong' with my health. I want it to be about living life and having fun in spite of it.

I admit to having (inappropriate?) guilty feelings at times. Why should anyone feel guilty about being able? But there are times I do, because I'm lucky that there are still a LOT of things I can do, even though my heart rate does go wacky and I do get very tired and achy.

I'm doing less than what I'd be doing without this of course. But I am also doing so much more than I thought it was possible to do when I first read about this illness, which is why it took me 2 years to actually get a watch and check my heart rate, because I thought- it just can't be possible! I can walk 6-11 miles, I can dance all night, I can (hopefully) work full time. So why am I bothering keeping a blog about a chronic illness when, compared to many others, I'm not THAT ill??

It sometimes makes me feel like a fraud. Like maybe I should just do what that cardio said and 'forget about it'. But no. If I could feel better, if I could be helped, if I could do MORE... then I want to.

My main symptoms are fatigue- which I've learnt to live with and push through, overactive bladder, which is helped by medication, and excess thirst- which means I just have to drink water all day long. (I'm such a thirsty type, if I go out of the house for a while without a drink, I feel quite uncomfortable and my lips become really dry. I feel like I am constantly checking places for both water and toilet facilities!).

I guess the reason I am keeping this blog is for my own sanity because, even though I am lucky because I can do enough to live a relatively 'normal' life, I've known for 8 years that things are not quite right, and it's been really difficult mentally and emotionally because no Dr could find out why and no one really seemed to believe me. Even my parents used to sigh and roll their eyes and say things like 'you should try being at work all day, then you'd know what it's like to be tired' if ever I dared to express how tired I felt. And I used to think, I wish I HAD been at work all day and COULD be tired for a REASON, from actually DOING something worthwhile!

So now that I know what could have been 'wrong' all this time (well, even if it's not POTS there is something very definitely, physically wrong because my heart rate is doing wacky things that a 'normal' person's just wouldn't do!!) it's almost a relief... but it's also quite scary because I can't take anything for granted anymore. I mean, I used to take for granted without even thinking about it that my bladder would store adequate amounts of urine so that I wasn't always feeling uncomfortable and like I needed the loo, now it won't and I do feel that way (even with meds), I've had to adapt.

So I guess this blog is about adapting. Even though I know I am lucky and that things could be much worse, and I don't in general feel at all sorry for myself, I still have to adapt. I still have to come to terms with the fact that for 8 years I was right, something WAS wrong, I just wasn't believed and it wasn't discovered.

I guess it's like finally having a voice. I can finally (well, just about anyway) say- I feel like this because of POTS. Or, I'm having a bad day/week/few months because of POTS.

Anyways, I'm going to be firm with myself and stop the silly guilty feelings because that is so pointless and isn't going to do a thing for anyone. I have I.S.T, maybe I also have POTS, and I get very tired, but I know I am lucky because I go out walking, I go on Big Nights Out, I go abroad and I live life to the full.

So, although this blog is primarily at this time about my journey towards finding out for sure whether it is POTS I have or not... it is also going to be about enjoying life.