Monday, 21 April 2014

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? 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.

Tuesday, 15 April 2014

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.

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.


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 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.


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.


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:

This is an extremely useful link and I strongly advise looking at it:
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.