More ups and downs (literally!)

[Guest guest]

Well the rollercoaster continues! The past few days have been a bit

of a blur of good and bad, both of which leave me sitting here

rather stunned and exhausted. Firstly my night mare neighbours

arrived home for their royal visit (they live in Saudi but come home

for a month every year to parade around and act like they own the

street) complete with their 7 year grandchild - the brat from hell.

I swear if that child is right I am very happy being wrong....right

form being a toddler he's been a brat of the highest order and age

hasn't mellowed any of his talents sadly. My days and sadly my

nights too are now littered with the piercing tantrum induced

squeals of said child.. a noise that can only be likened to that of

a mating Guinea Pig on Helium. Now when I don't get to sleep until

4am and the bratling next door starts screaming at 5am, it makes a

recipe for one very grumpy, tired and very possibly murderous little

mutant. I am now actually looking forward to my week stay in the

hospital just to get some peace!!

At least I know that my stay will be happening soon now, probably

around the end of August giving me time to have my wrist MRI and see

Mac again for the results before heading off to be tortured, sorry

assessed by Prof. I actually went out yesterday to buy some gear for

my hospital stay (and escape the brat for a while too!) and while I

normally hate shopping, I have to admit I had a pretty good time. I

visited a new factory outlet village, but as I'm so awkward to get

clothes for (being small but disproportionate due to my Marfan

factors) I didn't hold out much hope of success. Hee-hee, was I

wrong - I only came home with £120 worth of designer gear for less

than half that amount! Guess my ish heritage is paying off at

last bringing out the bargain hunter in me!!

I did of course pay a high price in other ways though, feeling awful

this morning with very sore joints and muscles and more worryingly

palpations and dizziness. On checking my BP I found that it was

90/40 and my heart rate was 136....and I was just sitting down! When

I stood up I almost fell over and my HR shot to 170. Fortunately I

wasn't having any chest pain and long runs of arrhythmia or I'd have

had to call my cardio guys. I spent most of the day feeling pretty

awful, so rested up as much as I could and even fell asleep on the

sofa for while. I was starting to feel a little better around 9pm,

when one minute I'm washing my hands in the sink....the next minute

I'm lying on the floor looking up at my very worried parents. Seems

I had blacked out at the sink and been spark out on the floor for 10

minutes, barely breathing and kicking out an arrhythmia and

bradycardia. It took a while for me come round but I am feeling a

lot better now with my HR more stable at 90bpm now. I have a

horrible headache, not sure whether it's from my " episode " or the

fall when I blacked out, but I am a lot less dizzy for the moment.

So I'm firmly stuck on my bed and not really daring to get up at the

moment. This is all scaring the heck out of me and I am just anxious

to get on with the tests etc and get to the bottom of this. I get my

halter monitor fitted on Friday, but as yet haven't heard about the

echo, tilt test and cardio appt. I am planning on talking with my

cardiologist tomorrow though so hopefully I may get some more idea

of what is happening then. I will let you know if I find anything

out.

Sorry this turned into a long moan again, I feel like that is all I

do at the moment, whine about the latest twist in my medical

journey. You must be utterly fed up of me by now. Thanks for

listening though and please know I'm thinking of you all and here to

listen to you too.

Love and hugs....Jo

xxx