Thursday, 28 August 2014
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 'milk...no, spoon...no, milk...no, 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 talking...so 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 THIS...it'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 this...it means a lot to know I'm making a difference through my experience).
So....how 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 future..as long as I can maintain it.
This is a scene from The Watchmen...one 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
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 update...it 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 on....it'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 now...to 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
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 'yeah....it'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 was...how 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 far...so good.
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.
So...how'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 :)