Sunday, 28 September 2014
(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 control....so....bear 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 further...you 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
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.
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.
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 feel....in control.
Wednesday, 10 September 2014
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 spoiler....it'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 minor...it 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 protection...it 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
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....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 down....video 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.