Friday, 30 May 2014

You want to protect those around you...

...but what happens when you're the one who needs protecting?

I find I'm writing this entry reluctantly, but also think I need to try and decipher how I'm feeling. How I've felt for the last week or so. Also note, if selections of bits in here don't make sense...remember this is me trying to decipher thoughts and emotions in my head.

My last counselling session highlighted the fact that I live perpetually trying to protect people...from their own troubles or from mine.
Yet this time, I'm the one who needs help and protecting.

So far, from my point of view, since this started, I've lived in a bubble of medical instability and health visits and, on a sub-conscious level, I'm desperately trying to keep others out of this bubble. I'm happy for them to accompany me as I go through this experience, but find I want to fight hell and high water to prevent them from actually joining me in the bubble.
I'm in control and know how to deal with it. If others join me, then there's a chance they'll get hurt and I can't control that.
I have a number of people telling me to open up and realise that I'm not a burden to them. But if I feel like a burden to myself, then how am I not a burden to those around me.
I saw my parents yesterday to get my hair cut followed by tea, cake and a chat with mum and mentioned the whole burden dilemma. She stated that it's not a burden if the people WANT to look after you. If they want to care for you and make sure you're ok.
The voice in my mind mouthed wordlessly, trying to gain some argument against this. But it didn't work.
What she said made sense.

Now, as the bubble opens, this is a whole new level of 'protection' people are giving me (not just a simple 'how are you' or pat on the back when I need it). And therefore, the wolfhound hidden behind the door is waking up. It wants to protect them from what I'm encountering so as soon as I find myself in a more sensitive, vulnerable position because I'm accepting more direct help, it can become aggressive.
And if that aggression towards protecting someone else is still fresh, it unfortunately tends to hit others in passing too.
The wolfhound has two reactions: I leash it and I find humour in the matter, laughing things off as silly whilst pulling it backwards, or it escapes and snaps. I try and make the former happen and leash the hound as the latter just isn't fair. And I know this.

I also hate hurting people. I really do. So when I have to take decisions which might hurt them, it gets to me.
Which is why the whole paired pooling thing terrifies me.
Before I started writing this, I was sat here in complete quiet. The only noises were the ticking clock and the fish tank trickling. Yet it felt like I was sat in the middle of a noisy hub. Everything I read, everything I looked at seemed exaggerated and graphic in my head. I had my own entertainment system up there. And couldn't shut it off.

I've just realised that that's no longer the case.

Yes I'm aware there's meditation, but I used to use swimming for that.
I've neglected going swimming for a while now. I tend to be reluctant to go swimming when I'm working as I tend to have early calls and can't face exercise before going to a job in case swimming calls on me getting more sleep opportunities and food than shoots can offer.
So I haven't exercised in a month. Great for work and money. Not so much for exercise.

That's changing next week. I really really miss swimming. It's one of the few times I'm actually forced to meditate.

Wednesday, 21 May 2014

That which makes me stronger... also, at this moment in time, a major block to my getting a successful transplant.

Today, Tom and I attended an appointment with one of the doctors who spoke at the transplant seminar last year.
Tom wanted to understand exactly how antibodies stood in the way of a successful transplant so my specialist arranged an appointment to meet with this consultant.
I had to pass up training for a possible job today (it's not unusual for fate to make me choose between my health and a good job opportunity).
But the appointment was totally worth it.

This doctor gave a basic lecture on GCSE biology, explaining how my system worked and why there was a heightened possibility for rejection, actually giving information I hadn't realised I'd care to know.
He also highlighted that a plasma exchange is not being considered as it would be a ridiculously complicated treatment for someone of my high level.
From the way he described it, I would say cleaning my system would be as much hassle as the transplant itself so might as well just go for the one treatment.
I keep getting images of the Thames being cleaned: might as well be emptied and refilled rather than trying to clear all the crap from it.
Also - only people with Blood type A can't donate to me. Nifty to know!

Next step? Although we've still got a couple more people to test, Tom's calling up tomorrow to arrange undergoing stage 2 of the process (MRI's, Xrays etc) to see if he can be put forward, as my partner, for Paired Pooling.
As written here, I've already agreed to consider it a possibility after the next two tests. However, it was still a shock to hear Tom answer the questions required to initiate that level. I've been in a bit of a wonder land state recently and that brought me back with a bit of a thump.
When I realised what was being discussed, my immediate thought was 'no...not Tom. I want him to be ok to look after me post-op' (I now take this moment to say I've just glanced outside the window and there is an absolutely beautiful sunset outside: thick layer of grey/blue cloud with an underlayer of deep salmon pink/purple. It's lovely).
Then my sub-conscious peaked up, laid a metaphorical hand on my arm and said 'you know it makes sense'.
I felt my body concede to this fact and immediately felt the same chemical reaction I felt as Sadira before a fight. I could almost feel the corset and arm braces on me (alla Iron Man) as my brain went 'fine!'.

This whole thing can be such a distraction that I'd like to thank my parents again for helping me whilst I can't work. That level of support really makes such a difference.

Tonight, Tom accepted an invitation to go bowling with work buddies (a sign of how much he enjoys this job as this is novel for him). And I'm actually quite glad he chose to go.

Don't get me wrong. I'm not depressed. I'm not sad. I'm just in thinky state.
I needed some quiet time at home. Plus ice-cream.

Ice-cream solves everything.

Monday, 12 May 2014

Update and plug

An intensive couple of weeks for me with a casting, an extras job, then another job due to getting the casting (I know, right!!). And this week I've got three days worth of extra work.
Yeah, it's one of those 'when it rains it pours' moments. Above everything else, there was a slight issue with my EPO anaemia injections and I went the last 2 weeks without taking the dose whilst trying to sort the issue out. That said....after taking them for so long, I hadn't quite realised the difference they made. It really made me appreciate the energy levels I now have [quick reassure moment...I'm fine].
I've started taking them again and feeling a world of difference.

After this week's work, I'm now anticipating the silence to return, leaving me twiddling my fingers and learning those lines. On that note:



Slightly off topic, from Wednesday 18th - Saturday 21st June (7.30pm) I invite you, dear reader, to come see me perform as Sorel in Noel Coward's comedy


Perhaps it is not surprising that Judith, a 'retired' actress, her husband David, a novelist, and their two equally bohemian children, Sorel and Simon, have each invited a guest for the weekend, but neglected to tell anyone else! When the unfortunate guests arrive, they find themselves alternately amused, embarrassed, humiliated and ignored as their hosts continue to behave just as they please. How will their visitors cope with being thrown into the melodramatic scenes which form a natural part of their hosts' daily life?

Tickets: £13 (£11 Concessions)
At: The Compass Theatre, Ickenham.
Box Office: 01895 673 200 
(open Monday - Friday: 10.30 am - 5pm and Saturdays 10 - 1pm)


Do e-mail the address above if you've any questions



On a medical front: in my last post, I mentioned something along the lines of 'plasma exchange' (not plasma transfusion as originally stated).
My doctor informed me that this procedure is a complicated and difficult one which he wouldn't whole heartedly recommend. Maybe, if things do stretch out and I don't get any closer to having a donor, we MIGHT look into it. But it's not a process he'd put in front of me for consideration yet.
Fair enough. This was actually the response I expected so I moved on.

I am now looking towards Paired Pooling: out in the world, there are recipients and those who want to help the recipient but can't. Therefore, those pairs step into a huge database and, after a while are matched to another couple just like them. And a kidney swap takes place.
This procedure is slightly different to the live donor process I'm currently going through as 1) I know the people stepping forward and 2) the decision to go into surgery is final. As there are other people involved, those who've decided to go ahead with it....can't really say change their minds. So everyone has to be 100% committed.

We're still got a couple more people to test, but I'm mentally preparing myself for another no, and already taking a running jump into the next decision when I receive that no.