Thursday, 27 March 2014

All of the YAY

So, what's the happenings this month.

Seems, as I have a habit of trying to shrug off the mental stuff in a bid to keep me moving forward, my body takes over the responsibility of dealing with the negative. For example, when I was informed my last two donors didn't come up as compatible, I was hit with gradual fatigue, a headache and a pain on the right side of my face the next day. Then my glands decided to swell for 3 days after.
Physical reactions to bad health news (which is apparently completely normal for someone in my situation) seem to happen consistently, so I decided enough was enough and went to see my counsellor, resulting in one of the best sessions I've had in a while.
Hadn't realised how swamped I was with neurosis and other thoughts, whilst all the important stuff was left jostling for my attention at the back.

Feeling triumphant, I decided to go for a swim on Wednesday as, despite my previous blog on the importance of exercise, I'd started to procrastinate as I was constantly tired, ill or just couldn't face setting everything up each time. Last time I exercised properly was back in January and I felt awful so stopped for a bit, then never had the energy to go back to it.
So gentle swimming will replace that.
I woke up on Wednesday to find that my stomach wanted to develop a closer acquaintance with the bucket.
Luckily there was no pain, just fatigue. I was fine by the evening so I suspect it was just stress going bye bye in the most uncomfortable way possible.

So today, Thursday, I went 'no...screw you...I'm going to swim'. The trip also included a 10 minute walk each way...well a little longer today cos I got lost.
The swim itself felt....amazing. The water was lovely and I found myself meditating through the routine: inhaling through the nose, exhaling through the mouth to moderate my breathing and focusing on what I was doing and nothing else.
Oof, I didn't want to stop! I only did because after 10 - 15 minutes I started feeling out of breath and knew I had to walk back.

I decided to use that renewed energy for Kidney Research UK stuff, which I'd been struggling to do as my head hasn't been in the best place recently.

Kidney Research UK update: 

  • My distribution leaflets arrived so am writing up a note I plan to put in each of them, introducing myself as the Community Champion Volunteer (including a new e-mail:
  • the charity is setting up a number of walks around the UK and, as I don't think the walk itself is suitable for me, will be cheering those who are walking on. Received my kit the other day which includes a flag and a noise maker! Yay!
  • Remember that post I wrote about Joni and Dana's story and puppet show, Buttons? I'm now collaborating with Joni so we can put together our own show to raise awareness towards kidney failure.....with puppets!!

Plus holiday with mum next week then helping out at larp after that!
Yes, sounds like a lot, but most of it will involve sitting down and just using brain power rather than too much movement lol

So much yay!

Tuesday, 18 March 2014

Outweighing the good with the bad

Yesterday, I had one of the most enjoyable shoots I've had in a while: I worked as an extra on a beautiful day, in a beautiful location with a number of fantastic people in a terrific shoot plus getting to meet and talk (very briefly) with someone I've admired for many years now. Plus I spent the day with a group of people who gave me the best laugh I've ever had on a shoot and, at the end, had a supporting artist director tell me to try and get a gig on the Avengers movie so we could work together. I would if I could!!
So much fun it was ridiculous!

Today I woke feeling exhausted and with a banging headache. Ignoring this, I returned the call I'd received from my renal contact and was notified that the last two people I had tested for compatibility may not be suitable either. She still needs to talk to the consultant, but it's not looking good.
It seems antibodies are my biggest road block right now.

On top of that, I had a course later this evening to meet some people I've wanted to meet since I got into this game, but my energy was too low and despite paracetamol and washing my hair (thus massaging my scalp), it made no difference and I had to cancel.

This got a bit much for me and I left a message with the renal counsellor I saw before deciding to have the transplant, who very kindly called me back immediately and arranged a meeting for next week.
It's as if having a blast yesterday meant I had to pay for it today with everything coming down at once.

That said, everything probably blown out of proportions now because I've a pounding headache and I'm feeling blue over the health results.

See? Starting to feel better already

However, today it's just hit me hard and I need to allow it to temporarily drag me down before I can perk up again.

I'll be fine by tomorrow. You'll see.

Thursday, 13 March 2014


All hospitals need this.

So many complaints about delays in hospitals due to under staffing or bad management and yes, sometimes I agree, but every so often, it's just this and we need to remember this:


Tuesday, 11 March 2014

Plug for artistic talent!

It's just clicked that I should have written this sooner, but my mind has been in a few different places recently (highs and lows), so I'd like to apologise to my friend for not having done this before!

Joni-Rae Carrack (left) and I have known each other for a while now. I've pulled through some difficult situations because of the strength I've seen in her and worked to reflect it in myself.

Emotion and creativity can be explored and represented in a wide variety of different ways, and, being the daughter of an arty family, I love all forms of creativity.
Since watching the stage production of 'War Horse' (if you can get yourself to the theatre to see it, DO!) and 'The Wild Bride' (absolutely astounding), the form that's recently captured my heart is puppetry.
It's an art form which should be all levels!

This being the case, please check her and her friend, Dana's production of 'Buttons' at The Little Angel Theatre, tonight (11 March) and tomorrow (12 March):

And if you're unable to make this show, please follow her Facebook: Joni-Rae Carrack Puppeteer

Friday, 7 March 2014

A brief yet good moment of triumph

I'd like to open up briefly, reveal a further level of vulnerability and layer out what I've literally just gone through.
Not only because I think it might make a further interesting read, but mainly because it was a triumph over an anxiety attack which I haven't had in a while.
I seem to have stopped having them and refuse to allow them to enter every again.

Before I begin, as I spoke to a selection of people this morning, I would like to state that this attack was not brought on by any one I spoke to. It was merely the act of trying to juggle a selection of tasks and time which were my choice to do. 

I haven't had an anxiety attack in a while. The feeling of loss of control, the room spinning, trying to make order of things and feeling like I'm losing time. Because I have a sense of distraction, I start concentrating on something, then realise I've forgotten that other particularly important thing and begin to freak out because I should have reorganised better.

Today, I realised I had a number of things to juggle and instead of looking at them one at a time, I made the mistake of trying to look at them all whilst my adrenaline was high (raised due to potential work stuff happening).
I began to feel that if nothing could be rearranged and if I did things in a certain way then I'd miss that and fuck that up and I would make the wrong choice and oh hell...oh hell...oh hell.

Panic attack initiated at, reorder reorder! at 10%....oh god shitshitshit...20%...

OK STOP. Push everything out.

Force myself to sit on the sofa, ground myself (as once instructed by a friend of mine), open my eyes and force full awareness of my surroundings (see what was physically before me and not what was on my mind), then breathe: count of 4 in, count of 4 out.
Look at the clock for reference and do this for a couple of minutes.

Start feeling oxygen returning to brain.

Start to relax

Feel the 'conundrum' cautiously return: 'can we come back in now?'

Find myself looking at the clock for reorganisation, yet lower panic. Ok let's try again. I've got that at that time, but if I do this then that, I won't have time for that.

Ok...Ok...can I re-arrange that.....yes...yes I can. And that would actually work out better with that.
Ok....rearranging possible, thus giving me more time to do this.

Ok that works. *Urgent spike hits* as my brain reminds myself why I panicked (almost a way of forcing me to appreciate my having worked things out): It's sorted! You're doing what you need to do. It's your life. It's sorted.


All this in about 15 minutes.

After effects: I've now re-found the reason I was excited (which caused the adrenaline spike) and focused on that.