A little acceptance

I have no issue talking about my kidney failure. There's no point in not. It's a part of my life and my low energy is a constant reminder anyway. Not talking about it won't make it go away, so I'm fine discussing it.
And I always thought this would be enough acceptance of my medical state.

Turns out it's not the right level of acceptance. During the last session, my counsellor gently forced me to accept that just because I talk about it, doesn't mean I'm accepting the full blow of the emotions festering within me because I'm ill. I refuse to acknowledge how angry it makes me and when I don't, other aspects of my life suffer the brunt.

Bruce Banner from the Hulk explaining how he keeps his transformation under control

On this realisation, I've now found I'm being kinder to myself, able to control negative emotions that threaten to take me over with a little more easy...mainly by letting them in. If I do that, they pop in for a visit, I try and understand why they're really there, then say goodbye in my own time (it's better than having them banging at my door, demanding entrance, whilst I sit against it thinking 'it'll go away soon').

Sometimes you have to allow and appreciate the pain you're putting yourself through due to a particular situation before you're able to physically...and mentally...get on with life.

This being the case, I discovered something about myself recently. A reason for a certain procrastination even I didn't understand.

Since getting back from larp about a week ago, I knew there was something I needed to do. There are a couple more donors I need to speak to and arrange things with. I kept thinking 'I need to contact them, need to message them, need to do this', yet finding myself distracted by other things or feeling too tired to even think about that.

Going round to my parents and having a chat with family and a friend who's like an uncle to me, it suddenly hit me: I'm too scared.

I can't handle being told for the 3rd time that another couple of people aren't compatible with me. Given the fact that each time I've been given the news, I've then fallen ill as my body is in a state of tension before I hear back, then I'm hit by the wave of negativity, I don't want to know any more. 

I've even started thinking about the idea of looking into adoption or surrogacy for a baby and just forget about the operation. I even mentioned this to Tom. His response was 'It's certain something we can consider, but you'll still feel tired and ill. I thought that was the reason we were doing this? Do you really want to look into those possibilities whilst still feeling unwell when we've got a chance to make you feel better?

No...no I don't. As my mantra goes: I'm tired of being tired. I realised later I just said that so Tom would remind me of why we're actually doing this. I was just using the other thing as a possible excuse.

I just can't handle hearing 'I'm afraid it's a no' again.

That being the case, Tom's taken over the task. This takes the pressure off me and helps him help me. He's able to approach it in a 'we need to help my wife' sense rather than my renewed reluctance and combined personal emotion preventing me from getting the job done.

My counsellor did mention something along the lines of 'plasma transfusion' (replacing the antibodies in my system so they're not quite so high, giving me a better chance), but she said she wasn't 100% sure about it and it contradicts something my specialist said so will need to check that at the next appointment.

Back to reality

[NOTE: as I write this, I think I'm still recovering from going on a completely relaxing holiday to spending 2 nights going to bed at 2am, so my mind is a little addled. Therefore, the structure of the sentences below may not be as clear as they should be, but if I wait for my mind to clear enough, I might not get this out for another few days, and I don't want that to be the case]

Huh. So I spent several hours writing a blog post yesterday, realised I was too tired to know what I was saying so decided to re-read today.

Came back, decided to change one thing, clicked two buttons and bye bye post.

Balls. 

Never mind. Clearly wasn't meant to be. Take 2....It's a lot to read. If you take anything away from this, please let it be the link below. That's the most valuable part.

The last two weeks were designed to relax and have fun: first on holiday with mum then larp. Conclusion: success! And some reflection time.

Holiday

This was a very impromptu trip which involved staying at my aunt's flat in a beautiful little coast based town. The crap weather in the first two days was more than made up for the rest of the time! 

Our only entertainment was chatting to each other, walking, reading 2 books we'd brought with us or playing an addictive number game on mum's iPad. It was a constant state of meditation as there was little to nothing to do. It was awesome. Seriously relaxing! Made coming home really weird and slightly trippy! 

Our favourite walking route was a really lovely path along the coast which you only knew existed if you could spot the odd red and white marks on rocks, directing you the right way. 

Not the ideal path for someone with mobility difficulties, as even I had trouble, but the view by the coast was totally worth it.

However, being me...at the last 2 days, restlessness began to kick in.

Don't get me wrong, it was a really lovely holiday, the view was amazing and it was fun learning lines for my upcoming theatre show (watch this space) and chatting with mum about stuff we'd never really discussed before. 

But I find it really hard to keep unoccupied for too long. Whether it's just sitting and reading, or being physically active. I constantly need to do something. I started looking forward to the weekend.

Still I had a lovely holiday and actually felt a little emotional going back as I've always felt that touch more at home abroad than I do in England. But again, England is where my life is so I'll always come back.

We got back to London about 12am, so I stayed over at my parents and the next day saw me at a well planned counselling session.

Walking into the hospital was enough to make me go 'oh yeah....this'. 

Chatting with my counsellor, I realised that mentally, I'm a mini-hulk (shush...just keep reading): 

I'm constantly in a state of anger and frustration that I've been handed a dud health card, I just hide it from everyone, including myself. Yes, I'm extremely fortunate on so many levels in other aspects of my life and I'm grateful for this on an almost daily basis (appreciating what you have rather than resenting what you don't have kind of thing), but I'm still deep down angry as I feel I can't get on with life until this is rectified. Still things I want to do....but just can't.

Coming back to the hospital poked that emotion and, chatting, I found myself displacing it all over the place, until she asked to me 'why do you really think you're angry?'

This being the case, I'm glad I had that chat before seeing a tired Tom and potentially laying it out on him as soon as he says the wrong thing. 

Since this whole health thing arose, Tom and I try and be as bluntly honest with each other as possible. I don't see the point in decorating the truth when it's just easier to be honest. Therefore, I try and communicate with him as much as possible so he doesn't misread me. Or I don't misread him. 

Any misunderstood looks or comments are immediately highlighted then explained. We learnt this early on so we didn't kill each other when times became particularly tough. Oh don't get me wrong. We still argue, but if it's a potential misunderstanding, we resolve it as soon as possible: 'why'd you give me that look?' 'what look?' 'you just looked weirdly annoyed when I told you this and turned away' 'that? oh no I was thinking about this other thing I needed to do whilst you were talking, carry on.'

That kind of thing.

That and my sighing. People sigh at each other...a lot. A way of demonstrating weariness at others. I sigh...a lot. A way of trying to catch breathe if I've talked a lot or undergone something which required a touch more breathe than I realised. I think Tom's learning how to interpret a sigh for health to a sigh for him! 

'What was that sigh for?'

'I was breathing'

'Ah ok'

ANYway. Got home and Tom being...y'know, awesome, had left me a display of flowers, my favourite chocolates and a note. I thanked him by picking him up from the blood clinic where he had donated and making him dinner.

Larp

For the first time in 9 years, we booked a hotel room. So glad we did. At the end of March, I started feeling chilly in our house and we knew if we camped and it was that cold, these days there was further risk to my health. Having bad circulation and Raynauld's (worse circulation in hands and feet) plus taking medication which can emphasise this problem has always given me a bit of an issue when camping in the cold but it's been worse recently. 

Larp events have now taken a different turn for me. For smaller, campaign events, I now work behind the scenes, doing make-up on the monsters etc. I can't fight like I used to (the will is there, but the flesh hyperventilates).

I've no problem with this as I'm good friends with the crew and people who monster are a laugh, so I enjoy it. It also gives me flexibility to pop in and out of the player group when wearing the crew jacket. 

I like that flexibility.

However, doesn't stop me missing Sadira and getting into the fray. Her life...I don't miss quite so much. That...that was a little painful. But what she represented I miss: my physical vitality, endurance etc etc.

I seemed to play her when I was at my strongest, and when I lost her, god that was a difficult time. 

She represented my armour and when the mental representative was stripped away, I faced redundancy, health issues came to light and more. 

Sadira encountered a lot of difficulty in her life and when she went, it's like life went 'ok...that was a test. Now your turn'.

I actually remember people commiserating that they couldn't believe I was going through such a difficult time and thinking the same way I did when Sadira lost most her family in one jolt: 'I can go about this 2 ways: I can either lose my mind....or pull myself together and become stronger'.

I chose the latter. Fuck me, it was difficult. Very difficult. But things that are worth getting/doing aren't easy. Makes it more interesting.

But I still miss her.

DID YOU KNOW

For those of you interested (which I hope is the majority), here are the different stages of renal failure. I'm between 3 and 4: http://www.missingmillion.co.uk/stages/

This is an extremely useful link and I strongly advise looking at it: http://www.missingmillion.co.uk/kidney-disease/

Kidney failure is very real and very serious. If you're in the early stages, it can be caught and prevented. My main anger lies in the fact that my first specialist saw I was at 70% and did a bit of 'wait and see'. We did that and functionality continued to drop. I'm now on medication to reduce my blood pressure which I believe was the main factor in decreasing functionality and I often wonder what difference it would have made if I'd had it sooner. 

So if you're worried, go....get....checked. 

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: CommunityChampionVolunteer@gmail.com)
• 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!

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.

This

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:

(Reference: http://lolsnaps.com/news/94191/0)

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 endorsed...at 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):

Buttons

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

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 5%....no, 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.

Relax.

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.