Reality hits home

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Went to the specialist for my final update before the New Year today.
As usual, at the end of the appointment, he handed me a piece of paper which confirmed the next appointment. I thought it to be the same piece of paper he always hands me, but this one looked a touch different. I also noticed he hadn't given me the usual blood test form which I mentioned to him and he reminded me that I'll have under gone all the required tests before the appointment during the physical in January. The pre-op physical.
When he informed me of this...that's when it all really hit home.

It's actually happening. Hooollyyy crap.

As we left the hospital, the mental wind shield of information which I've mentioned in previous posts (the screen that comes up and basically blocks my real vision with thoughts, comments, facts and concerns and prevents me from thinking clearly)

This is a rough idea of what it feels like...but less cool (Agent Colson from S.H.I.E.L.D)

was up and running to the point where I felt my eyes lose all focus on reality, I couldn't seem to acknowledge my location and had to have Tom steer me around the car park to the car.
On driving back, Tom popped the radio on to break the silence and see if there was something Christmassy on. He found...the 'Frog Song' by Paul McCartney.

For those of you who don't know this, my dad's company did the animation for the 'Frog Song' so it's a ridiculously personal song to me. That and the fact that one of the clearest lines in it is 'And we all stand together' had me in tears in 2 seconds flat.
I haven't heard that song.....in years.
What are the chances it comes on the radio now?

Turns out we were listening to Sarah Millican (one of my favourite comedians) on Desert Island Discs.
The next song she chose was the Superman theme song, which she said helped her focus when she had a particularly difficult or nerve-wracking situation before her. This song gave her strength.
The coincidence of hearing these two songs after the appointment was too much and I continued to break.

I'd like to point out that now, I'm ok. Still a touch frazzled, but ok. Tom and I took a moment in the car to pull it back, reflect, and help me remember my inner strength.

It's just the shock that, after so long....in the new year....everything starts to move. And today was the official stamp on the 'end of era' moment as the doctor handed me a different appointment form to what I've been receiving the last year and a half. Or possibly more. I'm not sure.

How I'm feeling

I'm struggling to do things myself again. I had an interview with an acting agent the other day, which I'm delighted to say, was successful and I now have an agent for the new year (yes, they're aware of my medical circumstances, but this made no difference to them apart from knowing there will be a delay in my being able to work). And I'm not entirely sure how I got through that.

My sense of time is basically in chaos now. One day feels like three because I've the morning, then lunch, then the afternoon, then the evening when Tom's at home. And yet, I can't seem to tell the difference between a day, a week, a month.
I'm basically in Life's waiting room and going through that feeling of having waited for hours when it turns out you've only been there 15 minutes...or you lose focus, forget the time and an hour has passed without your realising it.
My life is the waiting room and the operation theatre my destination.
On top of that, my sense of distraction and lack of focus is worse than it ever has been and my memory is getting ridiculously selective to the point where I now forget every other thing I was going to say in a conversation yet I'll randomly remember something I was told several weeks/months ago.
The best way to describe how my mental state is, without giving away any spoilers, if you've seen the film 'Wreck it Ralph' (a cartoon based on vintage video gaming...absolutely charming), all I'll say is, the relationship between King Candy and the Glitch. That is my brain.

Therefore I'm keeping myself to myself unless I have a chaperone. I know it sounds weird, but my anxiety still peeks through despite the medication. The medication just means they're more physical than in my head and I'm able to control them more now through monitored breathing (in for 4 counts, hold for 7, release for 8). They even occur when I'm with close friends who I care about and trust. My body's automatic reaction to pretty much anything that gives me a slight feeling of excitement or adrenaline is now feeling like I'm on shaky grounds.
So I struggle to be social unless I can 1) escape when I need 2) have Tom to act as a buffer for me.
This isn't going to be a permanent thing. I know it's not. But it's still uncomfortable as sin, and one of the reasons it may seem like I've dropped off the radar again.

Fortunately, however....I'm still laughing and enjoying life despite the addition of crazy.

Look at this through my eyes

On seeing this picture online, I was struck simultaneously by sadness and joy at how beautifully melancholy it is. However, I then realised the angel is smiling and death is sitting on cards which means he's playfully cheating. And now all I can see is the smile in this picture.
I then had another flash image in my head: this picture, but with me....sat up in the bed...grinning from ear to ear, my eyes swivelling across both players. I then found myself laughing and thought 'I'd want to be "awake" for that so I can troll them both with a huge grin on my face'.

When I go, I plan to go grinning and making the afterlife facepalm itself whilst I stand there giggling.
Ladies and gents, this is a morbid subject, but a very real one. When my time comes, I want you to imagine me quiet...reliving the more serious times in my life....then snerking because I can't keep a straight face any more, then cracking up at what I'm attempting to do.

I'm a random and strange person. Celebrate this fact. I try and fill my life with as much colour as possible (in fact my favourite shirt is a multi coloured checkered number). Remember me in colour....not monochrome

I know a lot of people are going to feel a twinge on seeing this, but honestly....all I can see now is the smile.

Forcibly turning a corner

Earlier this evening, I posted up on a social networking site that I'd re-read the leaflet containing all the medical information regarding my impending operation and had become a touch depressed.
So I had a bath. Put my music on. Lay back....and let my thoughts flow.

Bad....idea.
No....really bad. I found my thoughts draining into a pit I've avoided for a while and my head had started wandering into territories I knew meant my mind was peeking into the box I tend to keep locked and chained and in the darkest recess of my head.

Nope!! As soon as I realised what was happening, I almost heard the brakes on my mental drive screech to a halt and start going in reverse.
I put some dynamic music on and suddenly found myself picturing a battle, almost as though I were actively fighting my inner demons. I then stepped back into 'reality', imagined myself fist bumping my donor with the words 'let's do this' and walked towards the operating theatre with an image of all the people supporting me as shadow figures behind me, telling me they'd see me on the other side.
Curiously, I saw the characters who'd been there when Sadira went through her darker times, the companions who'd metaphorically held her hand, pulling her through.....doing the same for me but Frankie me.

I then went on a nostalgia trip, remembering what I'd done and achieved this year and it has to be said....I've done some pretty god damn awesome things. And when I get my health back....I can do more.

So here's a tip: when you find yourself driving towards the edge of that abyss, forcibly stop and remind yourself of what you've done in the last year. No matter how big or small (from combatting that work challenge to cooking that really lovely meal...or hell, even getting through the day without stabbing someone), it's an achievement and you should be proud.

I'd also like to say, since feeling crap to doing this blog, a massive thanks to those who've sent me messages. It's that which helps me imagine the supportive group behind me and moves me forward with my chin up.
Thank you.

Out of the tunnel, into the light

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[WARNING: the vlog is a combination of the script below, then some truths on what's going on in my head. It may hit a touch in the 'feels' as the young people say these days. But...it's just me being....blunt]. 

I'm in a whole world of my own. I called the donor team contact yesterday asking what the next move would be, got told we were going ahead and received some dates. We called up the donor, confirmed a date that suited us all, I then left a message with my contact who called me back today and left a message informing me I'd been booked in for that date, with a physical happening in January.

The date of my surgery....my transplant is set: 9th February 2015

When I left the message yesterday, shockingly, I couldn't think of anything else and had a slightly restless night: I slept, but dreamt heavily about life and worries.
Woke up this morning feeling completely dazed and decided to have a hair cut, a week earlier than my pre-booked appointment. Got an appointment first thing this morning and set out and it wasn't until I got home that I realised I'd sub-consciously arranged the hair cut as an act of preparation. Very much like when I agreed to go ahead with the transplant.

I spent an hour at the hair dressers, having first warned the poor girl that I was exhausted so might not make much sense and, bless her, she communicated with me the best she could, then left me to read whilst she worked. I got THE call whilst I was in the chair, but decided not to answer, especially not whilst my head was being worked on.
Once done, I left and immediately received the voice mail. It was my contact confirming I was booked in.
On hearing this news, I knew I wouldn't have the energy to cook lunch, so bought a chunky sandwich to keep me ticking over. That's when I saw my hand shaking as I passed the money across the counter.
Got home, ate it along with some crisps I'd bought to increase my sodium intake, and before I knew it, I was lying back on the mattress we use as a make shift sofa til the new one arrives and settling down to sleep.

Utterly, utterly exhausted. Good thing I'm on the Fluoxetine because right now I feel like I should be freaking out. I'm still getting hit by the odd, adrenaliney moments. In fact, there are times I feel like something's gone wrong and I get an odd, metallic taste in the back of my mouth followed by a horrible 'rushing' feeling in my system....then logic takes over and it passes.

I'm now sat at my computer writing this because...well....it's pretty bigish news and I've had a nap followed by a cup of tea so I'm feeling a touch more awake but really still not here.

So yeah.....I've got a date.
Bring on the new year.

A rolling stone gathers no moss

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I didn't anticipate doing a blog today, but have had an interesting development.

Seems this is it.

I spoke to my donor team contact this morning and they informed me that everything with the donor is fine. The next step is to arrange a final date for the operation itself and we've been given a selection of dates to choose from in February.
We now need to talk to my donor and decide which date suits us most. This is the major advantage to having a living donor...it's completely in our hands.
Once we've decided on the date, we contact the team for confirmation, wait, then 2 or 3 weeks before the operation, I have the final physical to make sure everything's still ok for the op.

Then we do this.

How do I feel?

Um....

See what I did here? I'm sluggish but also shocked...so....Turtle.

Well....after writing the first bit of this entry...I sat for about 5 minutes just staring at my hands, wondering how I really feel. Staring at my hands because they were at that moment my tool for conveying how I feel, and I couldn't use them for a moment because I wasn't sure how to use them for optimal explanation. Does that even make any sense?
Honestly, I'm not sure. The closest I can put it to is the following:

Have you ever spent months, possibly years planning something, going through bumps and obstacles and working working working away, knowing at the end of it something pretty huge is going to happen and you feel yourself thinking about it every minute of every day?

Then you wonder how you'll feel when it's....done?....Over?.....

That. What you get during that is what I'm feeling. But 10 fold.

What I do know is, I may have to leave some of the planning to Tom as I've so many thoughts and considerations swirling around in my head, I'm struggling to put 2 and 2 together when it comes to the operation itself. Of course, I'll have input, but at the moment I can't think straight. This being the case, at moments I'm actually finding it a touch difficult to talk coherently. This tends to happen when I've too many thoughts to process. I struggle to find the right words or put together an understandable sentence. Main reason being, all thoughts want to come out of my face at the same time. Basically, I develop a stammer. Unless I've got the words written down in front of me.
I try and control this by stopping....taking a moment to think....then talking slowly and carefully. But it's difficult when the person/people you're talking to aren't used to dealing with you like that. So then I sit in silence.

Also - having originally believed my tremors and muscle spasms/twitches were down to side effects, I've realised there's another cause for them. One of the issues I have is my system doesn't absorb as much sodium as a healthy human body. As I'm on blood pressure tablets to control my levels, I'm ok to keep eating more salt whereas people are normally meant to control how much salt they have as too much can increase blood pressure.
Fluoxetine actually further reduces how much salt the human body takes in, which causes a build up in the muscles and therefore causes the tremors and involuntary twitches I've been encountering.
After seeing my specialist on Friday, I kind of put two and two together and realised this isn't a side effect that will pass on its own, but means I need to increase my sodium intake.
Yes, my doctor has actually informed me if I get a craving for anything like crisps or Chinese.....it's ok because it's medicinal. I make a point of going for the most home made based crisp packets I can find (oil, potato, salt), but it does mean I can grab a packet, look at Tom and go 'what? It's for my health' and it's true lol.

So yeah....should be an interesting next couple of months.

I'm on top o' the world, ma!

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I had a specialist appointment today. Seems I've now got to wait for my donor to be contacted by the donor team or the donor team will contact me....or something. I believe when people have contacted those they need to, my donor and I then have to sit down and arrange a date....or something.
What I'm explaining here is what I know. It's kind of out of my hands at the moment.

But I'm not particularly bothered or worried because I'm currently the literal definition of 'the spirit is willing but the flesh is weak'.
As my depression has now been fully lifted, I'm now basically back to my old self. If a touch more hyper. I didn't realise just quite how long this depression and anxiety had been on my shoulders....or just how heavily, until recently. Which is when I sought help. I'm like a completely different person....well...me...again.
So, I have all the buzzing eagerness and energy ever! Then I do stuff and accidentally push myself and end up wiped. Which means I have to take care. Which means I HAVE ALL THE ENERGY IN THE WORLD EVER and if I try and sit still and stay calm, I twitch.
Apparently the twitching and tremors are also part of the renal failure and something I need to keep monitored. But otherwise....

In good news, however, I now seem to find everything hilarious. Watching a comedy program the other day nearly killed me because I was laughing so hard. And yesterday I sent a photo to Tom for a laugh and found it so amusing, I couldn't look at his messenger group without bursting into a fit of uncontrollable giggles.

It's really nice!

Yes I do still have the odd dark thought and yes I do still suffer moments of anxiety, but, as my GP said: as long as the good days out-weight the bad, then the drugs are doing their job. And I've got to remember I am still going through a difficult time, of which I'll still be reminded every so often.

But....as long as I can face those reminders with a smile on my face.....then I'll be fine. For real this time.

Week 4 update

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How do you subdue an over excited puppy with a broken leg, knowing if you let it do what it wants eg go bounding about in a field, chasing bunnies like a crazy thing, it'll do itself more harm than good and you'll have to pay for the consequences.

That is pretty much how my brain and body are working these days.

Week 4. I'm twitchy, restless, insomniac, tired with doses of fatigue and getting struck by the odd anxiety attack which my body registers but my head does not, meaning I walk around feeling uncomfortable as hell and just can't work out why til it clicks.
But I'm also happy and laughing more genuinely than I have in a long time.

It also occurred to me the other day that my wolfhound has transformed and become a panther: a big sleek cat, curled up in the corner of my brain, emitting a loud, contented purr. However, it's got a new companion in the shape of a hyperactive Labrador puppy, which is constantly jumping around the cat, nipping at its ears and yipping to entice it into play. That'd be just fine, if the panther didn't just want to stay curled up in that warm spot over by the window and sleep all the time.
This morning, I actually had an urge to look up part-time jobs to get me out there, earning some money, and I had to pull on the leash and remind myself that for the time being, that's not a good idea.
'But....but....play!!' my brain responds. So I throw it a small bone by cleaning bits of the house, or watching a film or studying. Months ago, I wanted to join an OU course to keep my brain ticking over, but fear of spending money then not actually doing the work or missing deadlines due to fatigue or bad mental state held me back. Then, the other day I watched a film based on one aspect of Carl Jung's life and found it absolutely fascinating. So, I set myself the task of studying him and his work.
At one point, I plan on travelling out to the British Library to do some more research to 1) get me out the house 2) sit in one of my favourite buildings in London. Surrounded by books.
Since I've been on the medication and house bound, I've craved culture, an urge to increase my knowledge and generally not be so stagnant.
And hopefully playfully muzzle this new crazed puppy friend of mine.

The one major draw back I've been encountering is I haven't slept properly for a long....long....time. And when you suffer fatigue....that's just evil. I wake up ridiculously early, then get restless, then the only course of action I can take is curling up on the sofa, watching TV and lulling myself back to sleep. This then results in my being pretty much knackered for the rest of the day. And I'm reluctant to take naps because, having previously embraced them, they now completely knock me out and it takes me a good hour or so to try regain enough energy to just sit up, let alone get up.
So whilst I've been sofa bound, foreign and independent films have been my intellectual stimulus.

And yet.....this weekend, I discovered a potential way to resolve this: bed time baths with ambient lighting (the lighting is important to help calm the brain).
The other day, Tom and I went to visit some friends and spend some time in their hot tub. I managed to calm my mind enough that I stayed in for just under an hour.
This resulted in two major benefits:
1) my circulation seemed to wake up and keep me naturally warm for the rest of the evening
2) I went back home....and slept......all night....til 7.30am the next day. I haven't done that in...I can't remember.

To see if it was just a fluke, last night, before bed, I prepared an ambient bath using a scented candle and a colour changing light at either end of the bath. I then put my ipod shuffle on, lay back and did some meditative breathing. I didn't notice the time pass until I heard Tom go to bed. And I usually find baths really boring and want to get out after 15 minutes.
After the bath, I sat downstairs for half an hour to settle my head, then went to bed.
And.....sleeeeeeeeeeept.

Then there's exercise. This produces toxins my body can't process. I hit a disheartening ache for days after, so I now walk for half an hour every day. That can have the disadvantage that my head starts mulling over the situation I'm faced with, my struggle and so on including the odd melancholy thought. So, I still go out for walks, but today I added basic beginners yoga to my regime and it felt amazing.
I've had yoga suggested to me by pretty much everyone. But when you feel as awful, mentally and physically, and drained as I did....you don't want to consider new ideas.
The drug having finally settled in my system and now having slept well twice this weekend has reopened me up to new ideas again.

And it feels good. I'm almost running on all cylinders now...