“I came, I saw, I conga’d” ~ Louise Rennison

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Writing this very blog post!

Okay so I didn’t exactly do the conga, but in my brain I was mentally dancing in celebration.

I’ve learnt three things from being in hospital.

  1. There is a lot of waiting around
  2. It is utterly exhausting
  3. I’m tougher than I thought I was

In a nutshell the tests have shown that my heart rate is too high, and my blood pressure remains too low. When I stand up my heart rate is increasing by roughly 50 beats, as opposed to the ‘normal’ 15 beats. As a result I get very dizzy, nauseous, breathless etc. The hospital and staff are lovely, and I have been very well looked after which makes this whole process easier.

I also learnt that I may need an operation to help things along, but we have decided to take stock and mull things over for a few weeks to decide.

The most important thing I have learnt is that nerves come in peaks and troughs. In the build up to particular tests I had to have done, or the journey up to London, and for the hospital stay itself, I found myself at times overwhelmed and all rational thought paralysed. But after a few minutes I was able to reintroduce the rational mindset and break the situation into smaller chunks which were easier to digest mentally.

This was a big lesson for me to learn. It also helped to not look ahead at what was to come, and in the end I feel as if I’ve sort of “floated” through this hospital stay, which in itself isn’t a particularly bad thing! Hopefully I will be discharged today or tomorrow. If I wasn’t so tired, I’d conga my way out of the hospital doors and into the car (and then sleep for the next 48 hours!).

Next stop: Birthday :)

Candles spell out the traditional English birt...

(Photo credit: Wikipedia)

“A little at a time until less becomes more and more becomes less on the other side.” ~ Johnnie Dent Jr

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For the last few months I’ve been working on my very first quilt for the newest addition to our family. I’ve finally finished! The photos aren’t great as it was rather blustery, but they give the general gist :)

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A view from the back

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I used orange fleece for the backing which meant I didn’t need to use wadding. Fleece was great to use because not only is it soft for a baby, it’s warm, cosy and very forgiving for a quilting newbie!

I leave for London on Sunday in order to be admitted into hospital on Monday morning. I’m feeling surprisingly positive about the whole thing, and despite accidentally chucking my phone down the toilet this week, I’ve had a relaxing run up to the admission. I’ll keep you posted :)

“Every flow has it’s ebb” ~ French Proverb

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Heart-001Being the month of love, February has thrown up an unconventional kind of date – I now know the precise time of my hospital stay. I will be admitted towards the end of March for four days and discharged the day before my twenty-third birthday.

When something looms, like a lot of people my natural instinct is to plan and prepare, but to also subconsciously worry. 

I have however learnt something in this particular process of waiting. The age old mantra that you shouldn’t worry about things you can’t control has never rung so true. I have tried before to go with the proverbial flow, but found that the ‘what ifs’ always managed to weigh heavier than the ‘so what’s?’

FlowIn hospital I will be having further autonomic testing for my POTS. These tests include tilt-table tests, where you are strapped to a board and tilted upright in an attempt to bring about symptoms. The heart rate and blood pressure are monitored throughout, and potential triggers are applied to see if any particular circumstances significantly affect HR or BP, such as the cold, using the limbs, or digesting food. The reality of these tests is that they are uncomfortable, as I learnt before.

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Concerns about these tests and trying new medication add to my stress levels, but I’ve learnt that worrying about all of this is making me exhausted, right now. I have been focusing too much on what might happen, and bypassing the present. In other words, I’m missing out.

The truth is that I can’t control what happens to me in hospital, and other than put my faith in the hands of the incredible doctors there’s nothing useful I can do about it right now.

Instead I’m refocusing. Last year I didn’t really celebrate my birthday, and this year have decided to mark the occasion in some form. I’m going to plan and prepare; I want to visualise a room full of my nearest and dearest, a gluten free cake topped with edible glitter and candles, a vase full of daffodils – the flower I associate with my birthday. These images are much more nourishing to the soul than visions of hospital beds and a tilting table!

Onwards and upwards.

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“Her name was Lola, she was a showgirl” ~ Barry Manilow

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I just wanted to share a little video. I was wrapping up some presents for my friend Carmen today, and Lola took a rather ‘paws on’ approach. She spent about fifteen minutes doing this, each time looking at me to rebuild her tower. It made me smile, hopefully it will you too!

True or false?: “By giving people the power to share, we’re making the world more transparent” ~ Mark Zuckerberg

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I’m concerned. I think Facebook has turned myself and a huge proportion of its users into cynics. Classic status updates which I’m sure virtually everyone has seen from time to time include: ‘I’m bored’; ‘At least I now know who my real friends are!’; ‘So tired’; ‘What a rubbish day’. My favourite ones go something like this: ’So annoyed right now!!!’, to which someone responds by asking what’s wrong only to be told not to worry about it.

Has documenting every detail of our lives turned us slightly miserable? Or just a bit boring? Or is it that we are finding it more acceptable to broadcast our mood, good or bad, to hundreds of people? Our activities too, we seem more prepared to share. I found myself tweeting something about my sandwich yesterday. I then realised that no one actually cared about my sandwich.

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(Photo credit: epSos.de)

Facebook is also used to gauge whether romantic relationships are ‘serious’ or not. New to our vocabulary is the term ‘Facebook official’ – changing your relationship status to ‘into a relationship’, making it public for the world to see. I’ve been asked if my relationship is Facebook official, and I was left with the impression that there is a great deal riding on a little click of a button. A bit unnerving.

I enjoy Facebook; I may even be one of those really annoying Facebook users (take the plank out of thine own eye and all of that), but the more I think about it the more bizarre I find Facebook, Twitter, and the information people are revealing to the world.

I’ve had internal battles with myself over the content I post on my blog: how much info is too much info? I write about rare medical conditions, a highly personal topic which requires a lot of inward scrutiny regarding what I am happy to publish for anyone to view. I’m comfortable with what I’ve posted, but a lot of thought goes into each post, and I try to leave at least 24 hours between writing and publishing to ensure I won’t regret what I’ve written.

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I neither resent the individuals who write status updates like the above, or think they waste my time (the examples I’ve shown aren’t taken any time recently from my friendship list on Facebook, if at all, just to clarify to those who have been directed to this post via Facebook!). I just wonder why we feel the need to share such thoughts and feelings.

I have recently been reading around the correlation between Facebook usage and one’s mood (a new study claims that those of us on Facebook are more likely to be unhappy compared to those who aren’t using the social site). It got me thinking.

I’ve considered deleting my account many times, but, although it’s difficult to admit, I really do enjoy Facebook, especially since I’ve become housebound – I’ve found it a comfort to read that life does go on. However, when I see a depressing update I can’t help but feel ever so slightly miffed myself, And similarly when I see an update that expresses someone’s happiness, it genuinely make me happy too. We feed off people’s emotions, and that’s just human nature.

I’ve therefore made the decision to pay extra attention to my Internet footprint to ensure I will regret nothing in the future.

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You can’t wait for inspiration. You have to go after it with a club.” ~ Jack London

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January has been a busy month! I still haven’t gone into hospital (sigh), it’s a waiting game at the moment. I’ve found it hard to relax into the New Year knowing that just around the corner lies a hospital bed with my name on it, but I’m focused on trying to remain as upbeat as possible.

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At the start of January I handed in my second piece of coursework for my Open University course, Creative Writing. We were asked to write a short story of 2,200 words, accompanied by a commentary detailing the techniques and processes we employed during our writing. I love writing, I wouldn’t have started blogging if I didn’t, but I haven’t written a story before.

I didn’t know where to begin. It seems that most people on my course have their minds filled with multiple stories buzzing away, and for them it’s just a case of finding the time to sit and write them out. I, on the other hand, do not have any plots or ideas outlined in my head – in fact it’s pretty blank on the writing front. I struggled with this for some time; as a student of Creative Writing I should be able to think of things to write – as a writer you are nothing without an idea. My confidence was therefore pretty low for this assignment.

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The wash from our boat in Devon

To try and ‘trap’ some inspiration I started looking through our family encyclopaedia until I came across something which caught my eye – a fishing boat. My parents have had a boat in Devon since I was a child, so I had lots of memories to recall. For the next month I spent my time thinking about being on a fishing boat, researching, asking questions and, thankfully, writing.

I really enjoyed it! I was also able to submit it before the deadline, (a rare occurrence for me!), and four days later my work was returned. The comments my tutor had made were incredibly detailed – I don’t think I’ve ever learnt so much from feedback I’ve received. I was very impressed with both the speed and quality of the assessment process, so to my tutor – a big thank you!

I am now studying poetry (and finding it very difficult). I’ve never really understood poetry, but I’m working on it and drafting some poems for the next piece of coursework in at the end of February.

In other news, I had nine inches of hair cut off. I nearly fainted when I saw my locks on the floor, but I love my new do!

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A new look for a new year. Perfect.

 

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Lola’s first play in ‘proper’ snow

 

 

 

 

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