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, 15 December 2009

Here begins a new journey...

I've started a new blog, because I'm all for new beginnings and fresh starts and all, but really of course nothing is ever a true beginning but a continuation of things. So a vast many things have led to this 'new beginning' of which I may detail at some point, but for now, I just want to stick right with the facts and not go meandering about into the topic of the past.

In my life right now, I am the happiest I have been in years. I have wonderful friends, lots of fun, happy times and a lovely boyfriend.

The purpose of this blog though is not really to talk about my life in general, I am a fairly private person so am not keen for that to be on display all over the web (not that blogger is 'all over' the web or anything, but anyone can access it and my mind is prone to paranoia at times...) . However, what I am finding myself wanting to write about is stuff that I either don't talk about with people because it's not really everyday conversation or stuff people really want to hear... OR I talk too much about because I may be on the verge of an epiphany that makes sense of the past 8 years of nonsense...

Now, at this point I feel I am rambling and I also feel I do need to delve into the past just a little.

8 years ago, I started university, picked up a virus and my life changed a lot. I'd always been happy, fit and active. I became unhappy, unfit and inactive. Various new symptoms cropped up and the list grew ever more... varied. I'm not about to go into this list just as yet.

Frustrated with my health, I joined a few forums where I talked about it with sufferers of chronic illness- and it was on such a forum that someone mentioned to me that my symptoms may be down to POTS aka 'postural orthostatic tachycardia syndrome'.

Now, initially when I read the description she linked me to- I dismissed it. I didn't think it could relate to me because I'd never had any problem with standing, never fainted or anything like that.

For some reason, maybe guidance from above who knows, recently I decided to re-read the site and look into it PROPERLY. And lo and behold, when I looked past the initial orthostatic intolerance type symptoms, I discovered a whole host of symptoms of which I DO have... and I felt like I was already having an epiphany. Like this syndrome could explain so many of the seemingly unrelated things I've 'suffered' with on and off (or on continuously, depending on the symptom) for the past 8 years...

So now I have begun a journey. It began by monitering by BP and HR with a BP monitor. Then visiting the Dr to tell her my HR was elevated and I'd been feeling breathless and shaky. Then having blood tests and an ECG. Then getting a continuous HR monitor with chest strap and watch and doing a week of 'poor man's tilt table tests' and fretting and wondering and waiting...

My HR has often increased by 30 or more beats per minute from supine to standing. I'd say 9 times out of 10. It doesn't tend to stay very highly elevated, hovers around 100-112 most of the time, but a few times it's stayed above 120. I think I have enough 'evidence' to warrant a clinical tilt table test anyways. Whether or not it will conclusively show POTS or not, I'm yet to discover...

I am to visit the Dr in the morning for blood test results and shall be bringing up my heart rate discoveries and politely requesting a referral to someone who can do me a tilt table test, while my heart probably goes into tachycardia just sitting there hoping for the outcome I desire...

It's the beginning of a journey. Of waiting. Of patience. Of hope. Of determination.

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