Tuesday, 11 November 2014
[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.
Monday, 10 November 2014
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?
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.
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.
Friday, 7 November 2014
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.
Monday, 3 November 2014
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.
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...