Friday, 19 December 2014

Reality hits home

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 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 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.

Tuesday, 2 December 2014

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.

Monday, 1 December 2014

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.

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.

Tuesday, 11 November 2014

Out of the tunnel, into the light

[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.'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 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'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

A rolling stone gathers no moss

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'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

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

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
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. 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

Week 4 update

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.
'!!' 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 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...

Monday, 27 October 2014

Week 2 on Fluoxetine and a link

It's just over two weeks since I started taking Fluoxetine. And it's really kicking in.

After a pretty rough sleep last night, I realised I'd recorded a couple of vlogs since starting the course, but not written anything for the actual blog.


The black cloud that once took up residence in my brain has gone.
I still have the odd flash of negative thought and anxiety, but they're more of a flash than a prolonged sense of frustration. For one thing, I no longer have 4 hour long guilt trips.
Before starting the course, my common sense, logical thought process and strength was wrapped up tightly in a box in the back of my head with no escape from the malice and anger surrounding it.
My last counselling session revealed that since taking the course, everything's swapped.
The negative thoughts are still there and I still have the struggle going on inside, but I've located the strength I had before and am able to use logical thinking to over come difficult situations.
No longer do I feel like the happy avatar in my head is curled up in a dark alley, having the shit kicked out of it by my inner demons.

For one thing, I can meditate. The usual method for meditation is to ground yourself, breath carefully, then focus on emptying your mind. I had no issues with meditation in the past, then it got to the point where it was almost impossible to focus my mind due to the number of thoughts and distractions floating through my head.
And now? Not a problem. I can even visualise which was always an issue.
I can also stand in a room, take a moment to observe the four walls around me and feel like I'm in it rather than a floating entity outside my own head.
The best part is I've realised I'm actively noticing the colours of the trees changing from green to all the colours. Taking it in rather than just giving it a cursory glance.


Ha! That's a whole different ball game.
First off, these past couple of weeks, I've been exhausted. Especially if I leave the house for the day. I've spent much of this time on the sofa, completely tuckered out, watching as much intellectually stimulating TV as I can find (here I'd like to thank Tom for arranging Netflix for us. saver). I've been pretty much next to useless due to my crap energy levels.

Despite this, however, I'm also buzzing. Every movement I make seems to be accompanied by slight physical vibrations, as if all the electrical charges and buzzing in my brain have leaked out and reformatted into my skin instead. It might not be obvious to those who see or listen to me, in fact in might just come across as nervous energy. But it's very obvious to me.

I attended a social gathering on Saturday, the first one since being depressed then starting the course of medication and after roughly 2 hours of being there, I actually had to force myself to lie on the sofa for a bit to try and calm myself. So it seems to increase with adrenaline. As the evening progressed, I was sat in a ball between Tom's legs to add 1) having someone close to me I could use as a focus point and 2) curled up in a ball so I could create some tension in me to try and subdue to the twitch and that only lasted so long til I had to get up and move around.

My morning insomnia has got a touch worse too.
For a while now, usually once or twice a week, I wake at 5am, try to get back to sleep, fail, go downstairs, curl up on the sofa with a blanket, put some mundane TV on, then pause it when I feel myself drift off. I then usually catch up on another 2 hours.
I tried the whole going to bed earlier to get better sleep, but that just resulted in my waking at 3am instead. So...I try and push myself, making my bed time as late as I can manage. Evenings are now putting something on TV, curling up on the sofa, then just zombifying my brain until I think 'right, that should do it' and slink off to bed.

Last night was the worst one I've had since starting this course. I could not stop vibrating.
I've found I'm usually able to focus the full body vibration into a single constant motion eg finger tapping or foot jiggling. But after a while that can get really annoying and a touch distracting. For others as well as myself. So, at one point, lying on the sofa, I raised my hand into the air, clenched my fist and focused the energy into that. Just focusing on holding my arm up seemed to help as I then realised I'd managed to zone into the last half of the program we were watching without noticing what my body was doing.

Then went to bed.
And had the most restless night ever. I could tell I was disturbing Tom too. I was clearly grinding my teeth, rolling around, and generally making a nuisance of myself.
I'm now honestly wondering if it's better if I sleep on the sofa until these symptoms pass. That might not give me the best night's sleep, but then, he's got to work in the morning. I don't. I can rest...he can't.


the meds are doing their job. One of the symptoms people feel during the early stages of taking the drug is increased depression, and I can understand why. If you're not used to feeling like this, it's pretty horrible to deal with. However, all the side effects I'm going through are what I felt before, just no major change really. I'm used to it.
I'll be seeing my GP in November to get a review and see if the dose needs to be adjusted and continuing with my counselling on a weekly basis.
What I've explained does sound unpleasant but when you've dealt with full on depression and anxiety the way I have, the strain and the fact that I knew I was losing's a very small price to pay to hold onto a peace of mind.

Donor's link
In other news, my donor has set up her own blog to describe her experience as a donor. 
Please do check it out as it's very interesting and well written and it fascinates me to see what the other side of this experience is going through!

Monday, 13 October 2014

Experience with Fluoxetine thus far

[Important note and message below main post]

Okie dokie...I was planning on recording my progress on the new prescription on a day to day basis, then posting them up as a batch later, but as the results have been fairly immediate and good and I doubt that will change much over the next week or so, I decided to post an update now.

Although anti-depressants can take a couple of weeks to actually balance out in the patient's system, the pill itself will generally start working within half an hour or so of being taken. Therefore, I wanted to start the first day feeling refreshed and rested after a good night's sleep so I could try and establish any new symptoms against what I usually feel.
Naturally, of course, that didn't happen as I barely slept a wink. Things out of my control kept waking me up (Tom's cough, needing the loo etc) and when I did sleep, it wasn't very restful. This isn't uncommon for me.
Blah. So...I tried to keep as open a mind about the first day as possible. Whilst feeling pretty knackered.
Within half an hour of taking the pill, however, I noticed I started to feel fuzzy. Unfocused, difficulty concentrating. But on an amusing level. I felt slightly drunk. I think it's called 'brain fog'.
The rest of the day was spent feeling as though I were wearing a beanie hat (it's a tight fitting woollen hat that sits just above the ears) that was just a touch too tight. But it wasn't a bad sensation. Maybe I was expecting worse, so the initial reaction was amusement.
I didn't really trust myself to do much given my sudden epic lack of focus and concentration (which is apparently quite normal), so it was a good idea to have started at the weekend when Tom was at home with me.
Thing is, I'm very aware of a patient with new drugs suffering psychosomatic symptoms (reading about the symptoms then convincing yourself you're feeling them). However, given that I've spent most my life with something just a bit wrong with me or getting hit by different forms of illnesses, I've learnt to be able to differentiate between what I actually have and what I could scare myself into believing I'm going through. That's actually the reason I spent so long in denial about being in depression. I didn't want to go on a course of medication for feeling 'sad' and something that could easily be dealt with through talking therapy, which many cases of depression can turn out to be.
It's a line thin. And a risky one.
Although I'll have read the pamphlet, I tend to try and forget about them the symptoms then check the pamphlet if I'm feeling a bit different to normal. It's a difficult situation as so many drugs have SO many lists of side effects. You just have to trust yourself.

I'm now on day 3 of taking the tablets...and a little surprised that I can already feel the difference. Kind of expected it to take longer.
Admittedly, I'm extremely tired, I'm a touch out of focus, my head feels a little bit like it's in a vice (again, not pleasant, but it's not the negative vice I've faced in the past), my throat hurts and I'm...hah....yawning. Lots. However, that could also be down to fatigue as that's one of the main side effects of Fluoxetine, along with insomnia. So you're shattered, but can't sleep restfully. Bit of a vicious circle.
Honestly, however, this isn't really new for me as the depression and my illness both exhausted me and I was struggling to sleep. So...fatigue is just what I was feeling before...just with a couple more elements thrown in. A sore throat is also a sign of fatigue and I've literally had one since I started taking the pills, so now I'm watching this particular symptom as I'm seriously unsure whether it's an impending cold or the pills. So far no other cold symptoms, except for that.

One of the warnings on the pack is that the patient may encounter an increase in depression, suicidal thoughts and anxiety for the first week (I know, right) which is why the leaflet actually asks the patient to let other people know what to look out for and expect and to keep an eye open for warning signs.
Now I'm wondering if this was reported because some patients struggled in dealing with the first batch of symptoms, which I can see being a little too much for people to live with if they then try and get on with the normal aspect of their lives (going to work, attending social events etc).
I think the only reason the increase of these symptoms haven't reared up for me is because I was hit by them so hard before I went on the drug, they couldn't get any worse.

Oh yeah, I'm also feeling cold. And I don't think it's just down to my Raynaulds or the weather turning really chilly.
Last night, it occurred to me that I was wearing the warmest pyjamas I own, a thick duvet, a thick bed cover on top of that and I could feel Tom's warmth radiating next to me....but I still felt internally chilly. And when I'm cocooned that well, I start radiating my own heat. I then recalled feeling cold/hot, is one of the symptoms.

My overall mood?
Ok, so that's the physical side of things. Is the drug actually performing and doing what it's meant to.
Yes. Or at least it seems to be.

I feel pretty good. Usually when I feel this good, I feel a hint of wariness in the back of my mind at the same time...but this time I don't.
It's possible it's because the drug has already kicked in and is offering me the balance I need and I just need the next couple of weeks to help me levels out the side effects.
But it's possible it's because I've been stuck in such a bad place for so long, the relief at having an escape is so strong it's producing my own chemical reaction which is coinciding with the drug and making it work more effectively and quicker.
Either way...I don't actually know, but am delighted this is the effect it's having.
I have a counselling session on Wednesday (my first after starting the course), so maybe that'll reveal some potential home truths?

Only bummer is, as well as the fatigue, sore throat and so on, my appetite's gone up, but I now feel nauseous after every couple of fork fulls so have to moderate my eating to ensure I actually eat, but that it's not an uncomfortable experience for me.
But quite frankly...given how I've been feeling up til now, I don't care. I'm thinking clearer than I have in a really really long time.

And it's like a breathe of fresh air.

The biggest test is when I go out into the world, into a situation that usually raises some form of negative reaction in me. That's when I'll know.

Additional note and advice 
If on reading this readers are tempted to go ahead and try a course of anti-depressants, I strongly recommend speaking to a counsellor first and checking if you don't just need to 1) have a couple of session of talking therapy 2) a course of CBT.
What I'm currently going through is a treatment to sort out the chemical imbalance in my brain. In the past, I was able to use logic to talk myself through moments of anxiety and depression. On occasion, I'd sit with a friend, talk something through, then throw off the dark mantle which had placed itself on my shoulders, give a grin, say 'I'll be fine' and mean it.
This is no longer the case. My problem turned from the metaphysical to the physical in a form of chemical disruption in my brain. Talking started to feel like I was just going round in circles. There was nothing I could do to solve the problems I was facing, there was nothing any one could say which would help dislodge the black shadow in my brain, despite my desperately wanting them to be able to.
That's when I realised, just talking wasn't enough any more.
Don't go on medication unless it's prescribed by a professional and you yourself are not certain in your heart of hearts it's the right thing to do.
Being on any course of medication itself can draining because you've got to remember to take it, if you don't, you might get hit by other side effects, and it's a constant daily reminder of what you're actually going through. You don't want to put yourself on that course unless you absolutely have to.
Trust me.

Friday, 10 October 2014

A prescription for relief

[The Vlog and blog differ as the vlog contains information the blog does not. It's also my natural reaction to what's happening rather than below which is more script based for those who don't/can't watch the videos]

My doctor and specialist team today proved exactly why they are made of all the awesome by getting back to me today with the update of whether or not I could in fact take a course of anti-depressants.

Turns out I can. 

I'm laughing. I'm actually feeling amazingly good today. I feel like I have an escape from the cloak of dark doom that perpetually lives inside my head, sapping any of the remaining strength I have inside me.
I have family, I have friends...all of whom have been there for me through thick and thin and have been pillars of strength for which I love them all.....but...there's only so much talking either they or myself can do to alleviate that which lives inside my head. What I've got going through my head is a physical, chemical reaction. And it needs to be tamed and controlled. And that opportunity is now available to me.

As of tomorrow (taking it in the morning with the rest of my medication to keep me in routine), I am on Fluoxetine at 20mg. Dosage may change based on what the doctor recommends. I'm seeing her in 3 weeks time to give the stuff enough time to filter through my system and actively kick in.
I'll also be seeing my counsellor on a weekly basis to help me through the first stages which actually adds to the relief that I won't be going through it by myself. 
The first couple of weeks I'm informed can be the hardest, but quite frankly, given the mental heavy I'm going through at the'll be interesting to see what difference it makes.

As the good patient I am, I read through the leaflet. I actually felt myself getting progressively more and more worried, until it dawned on me that....I'm already going through most the side-effects! No...really...I love the fact that one of the rarer symptoms is 'feeling detached from yourself'. 
That just described the basis for being me!

Actually favourite side effect is 'yawning'. Best effect ever. Cos no one yawns any more.
And yes, I tend to go all jovial over side-effects as it reduces the fear factor they may carry. If I remind myself that I'm already living with them, then it's less likely to have me going 'ohgod was that an effect? Gah!'

So yeah. I'm relieved. 
Of course, I've got to actively take them and put this theory to the test, but...I still feel like I have an escape.
Happens too rarely.

I will record my experience as I go.
Should be interesting....or boring as hell....I'm just writing this. S'up to you to decide :).

Thursday, 9 October 2014

Just one more way to get shafted

So...hah...been hit by an epic catch 22.

Last weekend, I left London for a brief trip to just escape myself and broke...twice. I mean seriously. The second time, I broke to the extent that I first completely physically closed off to the person I was with, then had to force my jaw open past the anger and aggression I felt towards life, to be able to communicate my thoughts to them and initiate a line of dialogue. Neither of those worked in pushing them away brain took another path and just....stopped. Turned off. This, however, actually seemed to give them a mental opening to get through to me and after a while, I slowly came back round to myself.
The whole process took about 4 hours. My intention had been to go out for a walk lasting a few minutes. Unfortunately, my mind had other plans.

I don't want to feel like that any more. It's too much.
So...on my return, I had a counselling session and repeated everything I'd gone through to her. She informed me that although I'd accepted that I was depressed, I hadn't accepted the level of depression, somehow repressing the severity of it and my counsellor strongly advised I skip CBT and go straight to a course of anti-depressants.
Now, I would be more than happy to do this, numbing the negative, self-destructive comments and the disorientating thick black cloud which rears its ugly head at the most inopportune moments. Not to mention that fact that I'm strained to the point where I'm now struggling to remember what it's like to feel strong any more. That mana potion of my life has run right out. I'm now working on sheer will power of those closest to me, basically holding me by the scruff of my shirt so I don't fall into the yawning abyss in front of me.
But...that's slowly becoming not quite enough any more.
Know the real kicker? Went to the GP today and was informed that anti-depressants can actually cause further damage to kidneys and aren't advised to be taken by renal patients.

My friends, have you ever seen me throw my head back and bray in laughter, only to follow it with rubbing my eyes and saying 'urgh, that was a laughter a hysteria and frustration more than anything else'
That. Any potential relief I could have to control the chemical strain in my head and stop that black cloud from descending any more may cause me further damage.
I honestly....honestly....feel like life is flipping me the bird.

The GP did find me something that might work, but suggested I contact my specialist to ensure it's actually ok. So now...just a touch more waiting. But the type I can handle. yeah...let's see what the next week brings.

Sunday, 28 September 2014

Just to clarify....

(NOTE: written yesterday - 27th Sept - posted today - 28th Sept - )

[This may be another one of those slightly unclear posts I tend to write when my head's feeling like a mare gone slightly wild and needs to be retamed. I'm working on getting it back under with me]

Ok, so after my last post about there being a high possibility of actually having my operation next year in Jan, I received a lot of 'yay!'s and 'congrats!", which is awesome and I'm loving the positive energy I'm getting from everyone *thumbs up*....


...I'm not out the other side quite yet. My donor has a teeny, tiny thing which needs to be checked before the path is clear and we can set a definite date.
That also means....there's still a chance we might be told 'it's not happening....'.

This is the reason I'm not going head over heels, crazy and celebrating.

What's happening next?
24th October sees her back in London for another, more detailed check up and a potential over night stay. Then...a week after...we get the results.
So just over a month....

...of more waiting.

Yes, I'm still in the same place I was 2 months ago, nothing's really changed....but....I'm starting to feel a little stretched.
I keep going through some bad moments, then bouncing back again and shouting 'yeah I'll be fiiiiine'. But the elastic rope on which I'm bouncing back and maintaining my strength, is a touch frayed.
When I went to see the doctor on Friday, my head was already feeling heavy and swamped by a tension headache: a headache no paracetamol or bath or anything can soothe. Basically, stress made physical....though...that said, a headache is a far more refreshing approach than waking up early in the morning, dealing with an hour's worth of nausea, then stumbling from bed and intermittently passing out then throwing up only to wind up in bed for the rest of the day as weak as a kitten. Which I haven't had in a really long time.
Silver lining and....all that.
See? I am getting better at dealing with stress *thumbs up?*

On going to the doctors office I was kind of hoping we'd get a touch more conclusive news than 'yep....can't...really confirm anything and daren't even consider possibly setting a date'.
On realising this, the words 'just...a little...further....' floated across my mind and I actually felt the weight and tension in my head and shoulders increase.
Even the doctor, bless him, could see the strain in my eyes and I could almost sense him thinking 'just a little can do this.'

So....the wolfhound is now wide awake and prowling. Hopefully, just for a couple of days and then it'll go back to sleep again. Usually does.

Basically, my anxiety attacks are back (heh did I ever really lose them?). I had one a couple of weeks ago, then another one just the other day.
I'm now painfully aware that I'm susceptible once again. Even as I write this, I can feel adrenaline coursing through me.
Unfortunately, I was in a good place recently, and it seems a shame that I've fallen, just a touch, on my bum so soon after that.
Fortunately, this has proven that they're temporary and just the odd phases. I can get round them. I just have to work through the bouts of susceptibility when I do hit them.

I'm still actively seeking counselling and next session, I'll be asking about CBT (Cognitive Behavioural Therapy) as the part of my brain that repeatedly beats the other parts of my brain has woken up again. CBT doesn't solve the issue, but helps the patient deal with their thought process and teaches them to break the negative thinking cycle.
This morning, I actually found a painfully heavy irony in giving Tom advice I myself should have been taking. But the negative part of my brain had swamped my thoughts so heavily, I was struggling to actually enforce my own advice. Curious that I actively realised it was the advice I myself needed at the time though....

I know there are people who'll read this and go 'oh no....' on my behalf.
The best I can say is...

I'll get through this. I always do. I just need to....wait....that little bit longer. I just need people to continue being patient with me when I have one of my...odd moments (going quiet, becoming blunter than usual, glazing over, memory loss....distraction....seeming to panic and rub my hands more over the small things....the usual schabang).

Hopefully, what I'm currently going through is only temporary. I hit the odd set back now and then.
I'll get through this one....I always do....Yeah....

Tuesday, 23 September 2014

*Eyes peep out of box*

My donor (see...I still find myself wanting to say 'potential' donor...just in case) came to London on 17th September, to receive the results of the physical test: a test to ensure everything's working and up to par and that she can actually go ahead with surgery.
Turns out she's such a good match, the medical team actually had us listed as sisters. Mental!
I've an appointment with my specialist on Friday morning and things may get rolling from there. However, there's one more thing they need to check on her before we can fully celebrate and set things in motion. But if that's ok (fingers crossed mainly for her), then yes...we'll be going ahead. And the chances of that are looking good.

Mental state
I feel the way I used to feel roughly a year ago or so when I got up in the morning, went to work, saw mates and did stuff. I feel...what's the word....normal (hah, or as normal as a person like me can get)? And.....cautiously optimistic. Things are going pretty damned well so far and I'm fairly accustomed to getting bitch slapped by life around now-ish when I receive good news. So although I appear to be very slowly leaving the box my sub-conscious had pushed me into, I'm very aware that at any point, something could happen to force me back in. And this time, if I go straight back in, it'll be with force and it'll hurt.

I'm informed there's a possibility the operation could happen in December or January. I'm not touching December as surgery will be followed by 6 months (plus) of monitoring with hospital visits, tests after tests, things potentially going wrong....and...I don't really fancy that over the holiday period or want to risk being in hospital for Christmas or New Year.
And I don't want to put her through the same. I think that'd be a touch mean. Especially if we have a choice.
Plus....not only will that be a hell of a way to start 2015, but my birthday's in January...a nice birthday present for 31 year old me.

So I'm treading carefully. Very carefully. But for now...I almost...almost feel like my old self again.
After the last few months, I'm also slowly reintegrating myself into society after having isolated myself for my, and others, protection from my head state.

So yeah...I'm in a good place at the moment. I can still feel a leash on the back on my head, ready to pull me back when the shit hits the fan, but otherwise...I'm risking actually being a bit content. I've still got lots on my mind, but that's a given. That's just me.

I'm also aware that anxiety now has a place in my head and occasionally I can feel its threatening tug, but Tom and I had a conversation in the car this weekend and he confirmed that I'm no longer as bad as I used to be. They may still threaten (like one did a couple of weekends back when the most random moment set off a mini attack in my head and I had to briefly take myself away from company), but they're far more in my control and I'm still doing freelance work and leaving the house, which, as Tom pointed out, I was threatening not to do any more due to a growing agoraphobia.

That's the word....I control.

Wednesday, 10 September 2014

When realisation hits home

Went to see Lucy last night: a film about a woman who, due to circumstances out of her control, ends up progressively channelling larger portions of her brain than the average human. That's no's pretty much the focal point of the trailers.

Throughout the film, I felt myself getting progressively more emotional, at bits which didn't really call for any form of empathy. As the film progressed, it suddenly gave me a minor epiphany, a realisation about myself. Well...I say resulted in my dragging Tom to the side of the building at the end of the film, squeezing him for all I was worth, getting emotional and just opening up in a wave of crazy, which I hadn't done in a while as every time I'd tried....I'd taken the wrong approach and just turned sour on him instead. So I'd put myself on lock down.
I've currently got a mini nuclear device brewing inside me and he's the one most likely to get hit by it, so I lock down so that doesn't happen. Whenever I tried to open the door, I realised he'd just get hit by waves of it, so in the end I just stopped.
I stand in the nuclear hub, looking out at him....and the world....from within....behind the perspex glass. Mainly because I find every time I steadily approach the subject with others, my mind seems to go 'god, no one wants to hear this crap any more...give it a rest'. And I stop. Then even potentially leave the room out of frustration for myself.

Cos that's the only way to protect people right?....Right...?

And the epiphany?
At one point (without giving away spoilers) Lucy states that she is using such a high capacity of her brain, emotions are becoming rarer and she can no longer....feel.
There's another point where she....kind of engages...with herself (no, not on a kinky level. Take your mind out of the gutter!) and that's when it hit me. I realised I've shut everyone out to the point where I've even shut off from myself. To the point where I don't really know myself any more. I even (and this is the hardest bit to admit because I feel like I can no longer be there for people like I used to be...) still feel the external emotions that come at me in waves and the atmosphere in a room, but then I instinctively hold my hand out and start....slowly...pushing it away, fearing that if external emotions come anywhere near this nuclear device I'm standing in the way of, it'll overload and .....well *holds both hands up then releases them in mini 'pff' motion*.

This....this isn't even armour to protect the wound the way it used to be. Now it's more. I'm in a box. And I've done the lid up so tight, I can't even get myself out. I even struggle to in counselling. I try and express what's going through my head, but it just doesn't want to come forward.
Seeing the film...somehow...made me realise this. Honestly, I'm not even sure how. I think it was something to do with the protagonist's way of interacting with the world that seemed...unnervingly familiar. Minus the awesome levels of intellect and special additional shit she gets.
Now that, hell, if I had that on top of what's been going through my head, I'd almost welcome the closed off sensation. At least that way I'd benefit from it.

In all honesty, reading back over this after I wrote it last night and tidied it up this morning, I'm realising a lot of people are probably going 'well.....duh!'. But sometimes the answers aren't obvious to the person going through them. I've encountered that myself when talking to people. Sometimes, a swift nudge from an unexpected direction is what's needed. To hit that part of the brain conventional methods can't hit. And last night...that happened to me.
Which now makes me wonder how many people I've frustrated in their attempts to give me that exact message.

On that note:
Friends have been offering themselves up as vessels for my worries....asking me to talk to them if I need to. But honestly, when you're this far entrenched in a box, you can't find the right words any more....and find yourself repeating everything. And that itself can be.....draining.
Not that I'm not grateful. I will always be grateful for the offers. More than I could say. It's just...I don't know how to words any more.
Even in previous entries, I felt like I was missing something....and this is the closest I've got in a while. Well...that's how it feels to me anyway.
The rest of it is just blllaaahhhhh....noise.

Monday, 1 September 2014

Some more rambling...

Maybe if I record my thoughts in enough places.............they won't be in my head any more....

[Note: I wrote this earlier this morning...then went out shopping, then re-read the draft and tidied it up....however, I think this is more a stream of consciousness to help me understand what's going on inside my head more than anything else. And might make an interesting read]

Update on the sitch 

The test is happening on Tuesday. Then we won't find out for another couple of weeks (I think). These next two weeks are my busiest in regard to doing stuff. Including work. Probably for the best. Keep me busy...out of the house.

I find that I'm occasionally forgetting to take my medication again. It's not life threatening...I can risk missing a day (yes yes yes I know I know I shouldn't, but it really doesn't make a huge difference if I don't). Notice I didn't say 'a day or two'. I know two days'd be foolish.

However, sub-consciously I think I'm 'forgetting' to take them in a vein effort to try and stay normal until I under go the op and have to take half a pharmacy for the first 6 months, then just a little less, then a touch less after that....for the rest of my life.

[Christ...if all you need is a cup of OJ and some toast and not a hand full of meds just to start your day when you get up in the morning...take a moment to appreciate this].

Current head/physical state

I currently feel like I'm in a wind tunnel. I'm purposely not listening to music and don't have the tv on in the background like I normally do because I've got enough of a loud mess going on inside my head.
I think just once, this happened to me, then suddenly the noise in my head just stopped....and it actually scared me how quiet it actually was. I honestly thought I'd had the TV and radio plus some you tube thing happening on the internet. But no. It was just me and my thoughts.
I'm very aware that if someone were to try and speak to me right now, it won't actively go in [distraction].
[since writing this, I've had two relatively important calls.....that...were a challenge to undertake]

It's constant white noise...just with the odd decipherable word popping through. It's not the screen or white board in front of the eyes which I've mentioned before. It''s the fight or flight: It's awake, it's up....and it's loud.
How am I feeling physically? Ok so the above is mental. Physically, I've a touch of the shakes (barely noticeable, but it's there. I keep fumbling my writing and items I hold), the slurring may still be there...I'm not talking much so can't tell...and I feel nauseous. And finding myself sighing more due to not breathing as deeply as I should be (cue use for e-cig which helps me focus on my breathing). It's a sigh that makes me sound fed up, like I'm feeling extremely blue etc...but I'm not. It's more a case of my body going 'thoughtsthoughtsthoughts...oh shit, yeah ....oxygen'. Inhale.

I'm preparing to fight. Whether I actually do when the time comes is a different matter.

Stepping away and returning to a re-read of the above

Ok....ok that's interesting. After I wrote that sentence above, I felt like I could step away to come back and read this later.
Did that. And now my head is actually a touch quieter. I can hear the living room clock again.
It's as if confirming to myself that I'm preparing to fight, helped. Helped me understand my head.
Lol I now feel like Robert Downey Jr in 'Scanner Darkly' (Great film by the way).
In replacement to that, I can almost hear the cacophony of 'meditate/exercise/yoga' which is now passing through people's minds as they read this.
Unfortunately, when you're in a state like this it....well...have you ever stood in a particularly windy terrain with someone trying to shout something at you...into the wind so their voice is carried away? That. That's what everything turns into when you're in the above state. Again...wind tunnel effect.
You know people are giving you advice, you can hear it. It's just not registering or sinking in. You think 'oh yeah...really should do that...' then it's gone. And you forget again.

This blog demonstrates the idea that if you've too many thoughts overwhelming your head, get them out there. If you can't talk to someone, then write them them.....get them out there one way or another.
Worried about them being discovered?.....bin/burn them. Tear them up. Just get those thoughts out of your head. Any way possible. Before they drown you.

Thursday, 28 August 2014

[No title...needed]

I haven't given this one a title because...didn't see the point really. I think the content is more important than what I label it.

Larp season is over, therefore my main source of distraction and release isn't available until next year so I'm now focusing my mind on work...

...and it just occurred to me that the next couple of weeks, or even next month, is crucial as I learn whether my donor can in fact under go the operation which could change my life (no pressure...).
Tension in my jaw and shoulders is back 3-fold, I'm back on the non-nicotine based e-cig as it gives me focus and helps moderate my breathing and I've found myself far more susceptible to zoning out...again.
The sense of clarity I had when I received the donor news has gone and the blanket I'd shrugged off is once again shrouding me.
My sense of distraction has increased, my concentration lowered and my memory is sporadic. I've found myself doing the 'thinking spin' far more frequently: that moment when you walk into a room to under take a simple task, let's say making a cup of tea. During the process, your brain notes you need a couple of items, and reach for one...doubt yourself and reach for the other. Within the space of 3 seconds, you can't work out which one would make sense to pick up first as your brain goes ',,, spoon' and you...quite literally...spin on the spot about 5 times until you realise what you're doing, stop....and force yourself to think properly.
I'm also listening to music on an almost constant basis now. Just so I don't....think. The rare times I don't listen to music is when I'm working or writing as that's just about enough to focus my thoughts into a linear process.
And random shots of headache which paracetamol and back rubs don't help.

My speech has also become slurred at times...I seem to develop a difficulty expressing myself and talking to others. This is worse when there's a high level of excitement and I'm trying to get my point across with a group of people who demand their voices be heard first. It's like being drunk without the high.
[in reference to the vlog: you'll probably notice now that my voice isn't quite as slurred...probably because I've a script before me and it's just me I've got time to think]

I have, however, noticed that I'm on slightly dangerous grounds: being naturally empathic, I can pick up on emotional readings just by walking into a room and it can make my brain explode. When I'm like's worse. It's like my brain is trying to replace my own emotions by picking up on others, so I pick up on pretty much everything and anything without clear focus of where it's actually coming from and THAT can send me into override. Therefore...there's a danger I become isolated. I can't handle being around too many people, so I close myself off....and thus shut myself off from society, knowing if I pick up on too much negativity, words I immediately regret will come out of my face and damage can be done. Even if there's nothing malicious behind it at all.
I know there are a number of people who read my blog, heed my advice and look at things from a different perspective as per what I've described my situation to be like (I can't tell you how much I've appreciated those people writing to me and telling me means a lot to know I'm making a difference through my experience). do I handle this and not isolate myself? ....there's no simple answer, I'm afraid. I just wing it. I cross each bridge as I come to it. I have to trust my gut instinct and if I was wrong...back away and try again another day. But that's how you learn.
Fortunately, when it comes to social events, I'm blessed with friends who understand my complicated head state and know when to joke, when to give me space and when to seriously check I'm ok.
Only once or twice in the past have I come across people who don't know me well enough and risked my unleashed wolfhound. Those moments have passed very swiftly...again...thanks to those friends who did understand me.

Ah...a bit of visualisation for you

I literally found this whilst waiting for the vlog to upload on YouTube.
This may have to be my new approach to any negative thoughts in the long as I can maintain it.
This is a scene from The of my all time favourite films. The guy with dialogue is Rorschach and it's the moment he's locked in prison for a reason which now evades me, but something that he's not to blame for...or something?
He is extremely bad ass, has been through the grinder, may seem like someone you'd cross the road to avoid but he'd probably throw a kitten out the window of a burning house if it meant saving its life. He's what I named my tattoo after.

Anyway! Positive thoughts:
- There's a couple of work things on the horizon
- I'm not depressed
- I can joke about the condition without losing hope
- I'm working off the renewed inner strength I was struggling to find last month

Thursday, 21 August 2014

Frankie - AFK (Away From Keyboard)

It's...been a while since I posted, mainly because I've actually been enjoying...being myself having overcome the depression I was hit with on and off last month. Mainly because I know, at some point in the future, there's a chance it'll hit again...

September is going to be a pretty huge month for us as my donor will be undergoing the physical tests to ensure she can under go the operation.
And I won't lie to you...I'm a little terrified.
I'm terrified if it's successful, I'm terrified if it's not.
I saw my counsellor yesterday and she highlighted to me the difference in my tone when I was talking about general, every day activities and the like then the latest health couldn't be more obvious that I'm desperately pushing the latter onto the back burner until we've received more news. Recipient guilt is already kicking in.

I've got a larp event this weekend, from Friday to Monday....and I plan to forget everything taking place in the real world. I've no intention of reminding myself what's happening in a couple of weeks time, and I've no intention of getting emotional over the matter. And I plan on doing this by not discussing it. It's not more armour I'm putting's more....indifference on the matter. Knowing it's there, but refusing to acknowledge it until I have to. Please don't mistake this for ingratitude. I'm extremely grateful that this opportunity has arisen and to the person in question. Seriously...It's why I was in such a bad state when I received the news...just utter shock that this opportunity presented itself to me.
I fully understand if the donor changes their mind because it's a difficult decision to make. But for protect myself...ok maybe I am adding a touch more armour. But it's mainly a case of acknowledging it, but then putting those thoughts away.
If someone asks me about it, I may give a small smile, have a little...something...flash across my eyes which they may or may not notice, then move the subject onto something else.

This is a subject I...for now...want to forget about. The last event I was at, I was ridiculously melancholy (despite my laughter and messing around) for both in character and out of character reasons. Each reason felt as important as the other so it put me slightly out of sorts. I was even told by a good friend of mine at the end of the event that I hadn't seemed my usual self.

I'm sure reality will pop up every so often with a stick and beat a reminder into me that I'm unwell, through the usual leg ache, physical discomfort, difficulty catching my breathe and the odd palpitation, cos...y'know...fuck being able to do what you want when you're body's got a limit on it. But for now....
Enough. I want to enjoy myself. I may feel a touch melancholy due to in character reasons, but I refuse to be made to feel crap due to out of character reasons. I intend on having fun. And hopefully THIS time I won't be mildly crippled by neck and skull ache. Epic headache!

Then September can come around and slap me with the reality stick as much as it wants.
What I will say is the weeks around the test and the results we'll be seeing friends and lots of the family which I'm really grateful for as that'll almost enforce the feeling of support I have around me.

But for now...I just want to allow myself the luxury of running away....from me.
My counsellor forced me to accept that despite removing my armour after the news, that's what I was now doing....and this weekend, I wholeheartedly welcome it.

Tuesday, 5 August 2014

Am I finally seeing the end of this long tunnel?

I began this entry on the day I received this news, just to record the full impact of my emotions. But truth is I'm posting it when I've seen my specialist, everything's confirmed and the ball is rolling. Given the number of road blocks we've encountered so far....I didn't want to tempt fate by posting this entry, then being informed we were back to square one.

This news came when we'd basically given up hope in finding a live donor, believing the antibodies to be a perpetual road block. Paired pooling was us going ''s not going to happen is it...' then diving head first into an option which could have us waiting for up to 2 whole years before being considered for alternatives if nothing came to fruition.
This last donor test was a 'what the hell...let's give it a go and see what happens before we give up'. Y'know...just in case.

Therefore, it was an epic shock to the system to call the consultant on 30th July and be informed that this person was:

  • Blood type O
  • Cross match a success
  • Tissue type 3 out of 6
  • No antibody issues

'I'm sorry...what...I...could you repeat that?'
'No. Antibody. Issues.'

This person ticks all the boxes and can donate to me. A match


Um...words failed me. That made the phone conversation particularly difficult as I had to keep squeaking to let her know I was still there whilst she continued to speak...then wait til we said goodbye before I could hang up then sit and stare at the wall...whilst my brain had a moment.
Only for a few minutes though as I had a counselling session literally half an hour later. I walked to the hospital in such a daze I'm actually surprised I didn't get run over by a car. I arrived just in time...then the month long overflowing dam just opened. I get the impression she may have struggled to keep up with me for the first 10 minutes.
After counselling, I went home, had a sandwich (not trusting myself with the stove) and just...stopped. I felt like I was rebooting. I felt numb. A month's worth of fighting depression, carrying heavy armour, trying to protect myself and others from a typhoon of crazy which I anticipated to carry for more months....only to start August with amazing news.
I can't express just how stunned I stunned I AM. Seriously. This was the one test I was anticipating a negative result, anticipating it so I wouldn't fall ill as my body reacted against what my brain was fighting.

The weirdest part? At the beginning of the year I think, we were talking to the doctor about setting a theoretical date for an operation, if, say in the preceding months I did get a donor. Just to give us something to aim for. Just to set our minds on a target. Something to work towards. It's something we use to help us move forward. If we didn't have a donor by then, we'd go for paired pooling.
August was the date we gave. We're here now, and ok so it's not an operation, but it's a hella step closer!

I feel the same exhilaration I felt when Tom, after 7 months of unemployment, told me he'd got a job. Only bigger. I'm actually scared about feeling excited in case something stomps on this.
I genuinely stood on the train on the way to counselling and actually pinched myself to see if I was having a vivid dream. It's happened before.
So good.

Next Step

Now we need to arrange the same physical exam Tom went through, for the donor to confirm all's well and good for the surgery itself. We'll then get the results, talk to my specialist in September and potentially even set a date for the operation (holy crap, right??)
If all goes well, I COULD (emphasis on the 'could') have an operation within the year.
There's a 'could' there because it's possible something might come up during the physical (finger's crossed for the donor, not as much for myself, this doesn't in fact happen!!), and 'could' because it's possible people who are more urgent will push my operation further and further along.

Honestly, if it IS delayed.....I really won't care. Given the fact that I'll have something so many other people out there are lacking....a donor.'s the patient feeling?

Tired. Dazed. And apart from a headache which started on Thursday and seems to have lodged itself into the base of my skull and refuses to leave, I have a sense of clarity now I haven't had in I don't know how many months.
Throughout the whole of July and a touch in June....and in swathes throughout the year....I've been covered by a blanket of depression. One so heavy, I couldn't see through it and felt painfully...overwhelming. In July, things got a bit much and, to stop myself hitting breaking point, I thrust the armour back on. And although it was heavy, it stopped me from feeling the pain I knew I had inside. I could feel the emotions worming their way around my system, trying to break out...but I refused to allow it exit, mainly because I knew if I did, it risked hurting other people. Mainly because they'd see how hurt I was. So I pushed it down and away. That's not to say, when I had positive moments and moments of laughter, they weren't genuine and I didn't enjoy them....but there was always that heaviness...just there.

For the last month of so, I've been desperately leaning against a bulging cupboard door, which threatened to spill open and cover me in all the emotional and mental shit I've been packing away.
After the news and counselling, I felt so numb, dazed and the heaviest fishbowling I've encountered in a while, the next day I awake to a headache which symbolised all the stuff I'd packed away into that cupboard finally exploding and breaking through. My face hurt, my eyes hurt, my neck hurt. I felt pretty awful.

BUT.....I felt like the heavy blanket of denial and general emotional hell was....finally lifted. And I could breathe again. I went out to a casting on Thursday and for the first time I realised I was noticing sights, sounds, smells and so on clearer than I had done in a while. I was actually aware of the world around me. I'd honestly been so deep in my own mind, I drawn into myself so much, my senses had been dulled. And I hadn't realised this until the veil lifted. I can now think clearer than I have done in too....damned....long. I almost feel like myself again.
One thing I will say is light's now actually seem much brighter. In fact, on Friday, I found myself wearing sun glasses for the first time in how many years because just the reflection of the light on the clouds got a bit much.

The only problem with this is, if something does come up to interfere with the good news and a possible operation, there's a chance I could fall back again. There's a chance that if there's a rejection, I could be hit by a huge dose of recipient guilt. There's a whole load of possibilities loaded up in the future, a whole bucket of shit waiting to fall on me.....

....but for now...I'm going to ignore the 'what if's'. I'm going to ignore the possible sword of damocles hanging over the whole situation. I'm just going to enjoy the good feeling and sense of clarity which comes with this sense of peace. Whilst it lasts :)

Friday, 18 July 2014

Head state and Tattoo

Head state

The last week or so, I've fought or gone through depression. Mainly since hearing the news of the paired pooling. Again, it wasn't the news that got to me, it was the length of time the consultant highlighted I may have to wait for anything and/or everything to happen, therefore making me feel like I'm putting my life on hold.

Then, the day before an appointment I was really looking forward to and therefore actually excited about, I heard something which nudged me back into a state of melancholia. Unfortunately, I wasn't able to pull myself back the way I normally do. So I took the safest option and stepped shutting myself off from those emotions and putting my armour back on.
Since the start of my counselling, I've had my armour off and my mental wound (as I call it) exposed, therefore enabling me to get the help I need, prevent me from falling ill from mental stress and, in addition, let those around me who want to help
The news I heard threatened to push me back into the pit I was finally considering climbing out of. 
So I had to shut all systems down for fear my brain would take an unwanted step, back into that pit. 

I now almost feel like my old self again (in fact this is the first time I've written a blog with a clear mind. I actually feel like I'm saying what I want to say, rather than a jumbled, grammatical mess)....and this is a really weird feeling because I'm not sure if that's a good thing or not. I could also be feeling weird due to the high intensive storm which hit last night; the lightening bolts hitting almost directly over our heads (seriously, I'm talking 1 Mississippi between lightening strike and thunder clap's a trick to find out how far the storm is: The more Mississippi's you count between each, the further the storm is). 
My head is clear, but still feels the electricity in the air and mild lack of restful sleep.

But I don't think that's it as I've been feeling like this since the day of the news. 
I'm hiding emotions/fears/worries to protect myself until I see my counsellor again (potentially a couple of weeks time). And I'm wondering how much of a good idea that is. The protection, not...seeing my counsellor again. 
Then again, I don't really have much choice as only my counsellor can really help me and I feel I need to protect those around me from the potential avalanche I could have brewing inside my head.

I have the Schroedinger's cat ('s_cat) of emotions in my mind. I still worry about things and it gets worse when I get tired...but it feels a little more controlled. 
How much of a mental explosion is just waiting to happen? Because I know I'm hiding something. Even from myself.

New Tattoo

The day after I put my mental armour back on, I got my you could say after I reapplied the bandage and armour to my mind, I obtained a literal open wound on my arm, in an artistic sense.
That which I've had put on my arm is the positive aspects of my head which struggle to get through:

Not the best picture, unfortunately as it appears to be a bit fuggy. 
It's roughly an inch or so below the wrist so it can be covered with a sleeve for work.

Here I'd like to add, I've been considering a wrist tattoo for over 4 or 5 years, designed it myself (finalised by the artist) and had made the appointment a few days before I had my 'moment'. 
After having the tattoo done, there was something about the Dragon that didn't click. It didn't demonstrate the passion and anger I'd wanted it to...I love love love it, but whenever I thought of the idea of emotional intensity, my gut instinct wavered when I looked at the final image as it didn't seem to match to the anger I had inside which I had originally aimed for. And I couldn't work out why. 

The next day, I was driving to my parents to go shopping with mum and taking the time to think to myself as I drove (an hour and a half in traffic does that to a person). Then, randomly, this phrase came to me. I read it a while back and It's a phrase I think of every so often when I'm feeling blue:

A man said to the Buddha, “I want Happiness.”
Buddha said, first remove “I”, that’s ego,
then remove “want”, that’s desire.
See, now you are left with only Happiness. 

I don't care what the source is, I don't care if Buddha actually said it or what, but for the first time since reading did make me think. And then it hit me. Did I really want a dragon that was in a perpetually passionate/defensive/angry state on my arm? fact the Dragon I'd been given would from now on represent Happiness contained within something that's so strong, daring and magnificent. 
As soon as I thought this, I was absolutely delighted. That fit it...perfectly. The image I needed and what I wanted: Happiness and Life.

A little back story: the reason I chose the Dragon was 1) because it's an awesome creature, so strong and powerful 2) I had a dream a while back about entering paired pooling. And my fears were represented by a very very vivid, angry yet absolutely beautiful Dragon. I remember just wanting to stand there and admire it, but the burning flames which came from its maw filled me with fear and dread and a need to run instead.

On waking, the image of the Dragon which stayed with me was as below, this colour, ferocity and intensity:

Image obtained from:

Yet in this pose, facing me (picture me where the flames are. But I got out of the way before they actually hit):

Image obtained from

The Ankh, because I've always liked that sign: the Egyptian key of life. I have a heavy, metallic necklace I used to wear constantly and each time I wore it, I realised I wanted a tattoo of one, but not on it's own. And that's when I started considering a Dragon. 

The tattooist I used was Eve from She was a pleasure to have as an artist and took personal interest in ensuring the design came out perfect. So a mahussive thank you to her for being part of that experience. She's based in Greenford and I highly recommend her!

Also - she informed me I needed to name the I went for Rorschach, the name of my favourite character in Watchmen (comic and film) and the name of an inkblot test in which people see what they want to see. People can see what they want in my tattoo...and I'll see what I want to see!

Given the above entry about my change in head's also possible having this tattoo placed on my arm had the affect I wanted it to. It's a personal message to me to stay strong and full of life in the face of adversity. 
It's one of the first things I want to see when I wake up from any treatment in hospital. A reminder of what I'm capable of.


In other news: Kidney Research UK have raised over £10,000 from their London Bridge Walk, over £750 of which was from those who contributed to mum's sponsorship page as people kept adding after the walk. I can't begin to tell you how grateful we are!

If you're interested in donating, you haven't missed the boat as you still can at: