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The POTS posts

So for anyone new to POTS, or new to this blog, I thought I'd put together a post with the different things I have written about my experiences with this chronic illness.

It's odd reading back old posts - seeing the different perspectives: celebrating two days without passing out, or presuming my struggle would be over after a few syncope-free weeks.

I went from knowing nothing and not being helped, to now having a real understanding of how I can manage my condition - and being helped by supportive and knowledgeable specialists.

Hopefully this can help somehow, whether you have Postural Orthostatic Tachycardia Syndrome, or share experiences through another chronic illness. Equally, if you have no idea about these illnesses then may give a little insight.

I'll keep updating this as I write more about POTS.

Back to this Jan 16
A short creative piece written in attempt to remember how to feel mentally strong when physically weak and passing out.

Waking up after passing out Sep 15
A little creative piece I woke about the experience of coming around after an episode.

World cup wheelchair fraud, or invisible illness and disability discrimination Jul 14
This was fuelled by some ignorant and quite damaging media coverage of disability around the world cup - which got me thinking about some of the discrimination I've faced because of "not looking disabled".

Going to a theme park with Dysautonomia (or another fainting condition) Jun 14
I went to a theme park for first time since I got ill in 2010, so thought I'd write about how that went. I had a wicked time, but did have a few issues. Included some tips on how to cope/enjoy it if you can!

The POTS Survival Kit Apr 14
Realised how much I'd learned about coping since I first got ill - through advice and experience. So this was a post with some tips and tools for getting through everyday.

Christmas with a Chronic Illness Dec 13
Some advice on how to handle the "happiest" time of the year and all the hard work that goes with it - physically and mentally.

It's like a loss Oct 13
I was sick and tired of feeling sick and tired. It made me sad and I wrote this.

How to be positive (even when everything is a bit rubbish) Oct 13
This is one of my favourite things I've written. Some life advice (chronic illness and otherwise) on how to stay positive.

On not passing out Sep 13
This one makes me a bit sad. I went 4 months without passing out, and was getting used to that - so I wrote about it. Then it all started back up again.

30 things about my invisible illness you may not know Sep 13
A nice overview post - answering a survey for Invisible Illness Week.

A summer holiday with POTS Jun 13
Holidays are difficult if you have a chronic illness - all that heat and activity is problematic. I wrote a post with a bit of guidance on what to do, and what maybe not to do.

POTS: the "other" symptoms Jun 13
Something I've often found is that people think if I'm not fainting, then I'm ok. Obviously not fainting is preferable but there's a whole load of other symptoms that go with the condition - which I talk about here.

Humour & illness May 13
Some thoughts on keeping your sense of humour through illness - how it helps to cope, to alleviate awkwardness and to maintain your sense of self.

Dysautonomia: all the medical tests Apr 13
A post outlining the various tests I've had (tilt table test, ECG, exercise tolerance test etc etc). While everyone's experience will be different, hopefully this can alleviate some pre-hospital anxieties.

How to help someone with a chronic illness Apr 13
People get worried about the awkwardness around offering help - should they/shouldn't they, what is helpful etc. So this one outlines the things people have done, and still do, that I'm grateful for.

POTS Apr 13
This is an odd fragmented, and slightly emotive, piece going over my whole POTS experience, and the frustration of it all.

Living with Dysautonomia: how to cope Oct 12
Living with this condition pre-diagnosis was incredible hard, with no one giving me any real help or advice. Hopefully this can give a little guidance on how to cope.

Living with Dysautonomia Oct 12
Bit of an overview with the condition after a year with it. Odd reading that "keeping hydrated and 4 tablets a day" still wasn't enough - now that I'm on 12 a day, and with knowledge and acceptance that I'm better but still won't be perfect.

Living beyond limits May 12
Reflecting on an inspirational TED talk, and how my condition made me push myself - establishing abilities I didn't know I had. At this point I thought I might be getting better, and that the condition would leave. Sad that it didn't, but nice to re-read and find that fight and enthusiasm.

21 going on 80 Dec 11
This was written a couple of months after I first got really ill. I was frustrated by losing consciousness daily, and also losing my independence - but determined to stay positive. I was happy I hadn't passed out in 48 hours - that gives me a bit of perspective.

For further information on POTS, visit STARS or POTS UK - both have great advice and resources, including lists of specialists.