Friday, 27 June 2014
Before Tom left for work this morning, I asked him if he knew when his physical follow up appointment is, giving us the results on whether or not he can be my partner in paired pooling and he responded he needs to confirm the final date.
We were informed the dates had been set in advance, we're just waiting for the letter to come through with this information. It's meant to be two weeks after the tests.
On knowing that neither of us knew, I then realised....I really don't want to know at all until the actual day, and here I was hit by a quote from the Hayfever (our most recent theatre production) in which my character, whose family name is Bliss, reads out one of her mother's acting reviews: 'If ignorance is bliss, tis folly to be wise'.
I have no idea if it matches up to my current circumstances, but that's what popped into my head.
If I know the date, there's a strong possibility I'll start focusing on it, obsessing about it and not sleep well. And I'll potentially build myself up until I get the results and emotionally strain myself.
If I don't know the date, the day we wake up and Tom says 'today's the day we're going to the doctors' I'll take it well and go 'ok' and go along for the ride.
I recognise I'm desperately protecting myself from falling ill from stress. Even as I write this, I can feel adrenaline coursing through me. I'm not having an attack, I can just feel my body's fight or flight flaring up....preparing me to run like a bastard.
Which is better...to be prepared....or unprepared? *laugh* to be or not to be. At the moment, I'm very much in blissful ignorance. And actually enjoying it.
Monday, 23 June 2014
I started writing this note to myself and immediately thought 'nope...that's hiding. Not meant to do that any more, remember?
A very successful show week has come and gone and last night, I had an amazing night's sleep. Seems I was so tired, I didn't even notice Tom get up for work. Unfortunately, that does mean my body is now relaxing and going 'oh yeah, you've been really tense most this month...let's start loosening those muscles you didn't even realise you had tensed...'
Ooooooww. I feel like I've been working out. I have a feeling that last night, my head was combating a lot of stuff, resulting in a lot of physical tension whilst I slept.
In other news, I've another (potentially the last) compatibility test on 30 June. The last one because, due to my antibody level, I'm just wondering what's the point of constantly testing if we're just going to get the same results and disappointment after disappointment. We're going ahead with this test because they offered and hey...you never know.
After that, I think Tom receives the results from his physical via a doctor's consultation, letting us know if he can enter paired pooling with me. THEN we receive details of whether the compatibility test done on 30th was a success.
I am now very much between a rock and a hard place regarding all those results. Why?
Well, in the past, I've unconsciously kept myself in a state of constant tension whilst waiting for the results. It's inevitable. Ever been to an audition? Ever sat an exam which determined your future? Yeah...that. You're going to feel the stress.
And when I've received negative news, though I prepared myself in advance, my body lets go and converts any mental stress I've been ignoring into physical stress and I fall ill (eg fainting, throwing up, etc). I'm really not looking forward to that possibly hitting again.
Plus either result could have an interesting affect on me: if both results are negative, I'll feel like crap. The compatibility test...I'm now kind of getting used to that.The paired pooling; well this is something a little different and I've a tiny flame of hope within me. Also mainly because I think a part of my brain sees the paired pooling as my last hope and, although we'd probably have to, I can't can't can't face having to go through the task of finding individual people and asking them to be part of the paired pooling. You know my whole protecting people thing and hiding in my bubble? That'll be on overdrive. However, if one of the results is positive, system are go........that clunk? That was the sound of me pooing out bricks.
Therefore for the next couple of weeks, I could potentially under go a massive emotional roller coaster.
Yes! If I get the opportunity to get a kidney, it'll be amazing! What I/we've been working towards all this time.
BUT IT'S STILL SCARY!
Hopefully, the combination of acceptance, this blog and my counsellor will help see me through the worst so I don't fall ill....again...on receiving the results.
I'm now preparing myself to start displacing and having to force myself to face the facts. It's going to be difficult, but fortunately, my mind has become somewhat clearer the last few days and I've now thrown myself back into freelance work, looking for photographers to work with and the like. Just to keep me busy whilst my mind is in its state of acceptance. I hadn't realised I'd put that side of my life on the back burner until recently.
Yes, ok it's another form of escape, but I'm fully aware I'm doing it. So it's ok!
(Now who am I arguing with here; you, dear reader, or myself?)
Thursday, 19 June 2014
Kidney Research UK charity
Before I start this post, as one of their Community Champion Volunteers, I'd like to do a quick mention:
Kidney Reseach UK is the leading national charity dedicated to research that will lead to better treatments and cures for kidney disease. Founded in 1961, the organisation has been at the forefront of pioneering kidney research for many years as well as providing information for patients and raising vital public awareness.
You can find out more information on the charity, the research and work they do as well as how you could potentially get involved (whether through events, volunteer work or a donation) HERE
On that note, as I'm unable to do the actual walk itself, I'm aiming to be part of the cheering team for the London Bridge Walk on Sunday 13 July.
Tom's Physical Examination for the Paired Pooling
17th June saw us at Hammersmith Hospital at 8am, having spent the previous night at my parents. We were both exhausted when we arrived at the hospital: as Stage Manager for our current show, Tom's been running around like a headless chicken trying to make sure everything's perfect and that previous evening we'd gone to bed late then woken at 6.30am.
I was just me, so couldn't get to sleep for ages, then had a bad night's sleep.
We were extremely grateful to mum for getting up and giving us a lift to the hospital which is about 15 minutes drive away.
On arriving we walked first into the wrong department too early, then found the Renal department ('oh yeah, now I recognise it') and were immediately called by one of the most helpful people on the live donor team I've ever met, who explained everything, omitting no detail.
First Tom's blood pressure then some blood were taken. We hadn't expected this, so Tom immediately reminded her of his previous experience of having blood taken there and was lain down.
It's rare for Tom to be effected by things, so it's really weird for me to see him go so white! Despite this, he handled it very well.
We were then led to the 2nd floor which apparently had the air conditioner on full blast due to the previously hot weather (not felt at that hour of the day!) then, in our sleep deprived state, we chose seats next to a completely uninsulated window. Tom had no jumper or jacket on him, so I kept covering his arms with my used, therefore warm, leather jacket.
We were freezing by the time he was called for the MRI then Ultrasound.
Whilst we waited in the coldest waiting room ever, we were somewhat amused by one of the hospital TVs showing an ad which contained the underlining message 'Have you faced an issue with the hospital? About anything? Then you must COMPLAIN! COMPLAIN TO EVERYONE! IT'S THE ONLY WAY.'
Pulling ourselves out of our daze, we then went into the NUCLEAR MEDICINE division (Tom informed me you have to say NUCLEAR MEDICINE in a dramatic voice, otherwise it's not as effective). (Warning: mini graphic description impending - On getting called up, Tom had a permanent needle put into his arm for the rest of the day. This device then allowed medical practitioners to inject or remove stuff from him without sticking a variety of needles into his arm and causing him unnecessary pain. I've had this device before and it's really weird as your body immediately goes 'get it out! get it out!'. However, he handled it like a trooper)
Nuclear Medicine is a formula which is injected into the system, the patient waits two hours, blood samples are taken, then another two hours pass (4 hours in total) and another sample taken, to see how well the kidneys have filtered out the chemicals.
It was then that it hit me: I was in a hospital and 1) not having my name called out 2) not the one being poked and prodded. I could actually relax a little. Very strange!
As soon as he had that installed, the first 2 hour wait began. It was now 10am and the first tests having been done, Tom could finally eat something. This came as a huge relief so we immediately decided to go for food. Aaaaand that's when the alarm went off. Really?! Are you kidding me?!
We continue to make our way to the cafe, watching the people around us. After a minute, we realised no one actually seemed to be in any hurry or even care, so we adopted this attitude ourselves and ordered some breakfast as it was far too early for lunch.
The test fire alarm still going, we sat in silence as we ate, conversation nearly impossible. At this point, I became thankful I didn't have a headache. It was that loud.
This gave me some time for contemplation. Tom had told me before hand, they'd shown him his scan results and he'd been able to see his kidneys (something I always find fascinating) and this train of thought then went onto how Tom's built like an oak tree of health so, if he's suitable for the operation, whoever gets his kidneys will be extremely fortunate.
And that's when I broke. It suddenly hit me the magnitude of Tom's action, giving someone else extended life so someone else would do the same for me. I'm mean....wow.
Unfortunately, the sirens STILL blaring, I couldn't explain why I'd suddenly started hiding my face and crying because I didn't want to shout it. So we had to sit there for a minute or two, Tom rubbing my back and me shaking my head in 'I can't respond yet' as he asked if I was ok.
Finally, finally the alarms stopped and I was able to talk.
We both concluded that as well as it being an emotional day, I was also exhausted due to not sleeping well. Finishing off our food, we decided to go outside for a walk...which turned out to be a bad idea. Even in the sun, there was a chill and we promptly lost all the body heat we'd obtained from our snack.
So we decided to return to the NUCLEAR MEDICINE waiting room which was, thankfully, warmer than the MRI waiting room.
So we got as comfortable as we could and read. And listened to music. And attempted to nap. The 2 hours actually passed surprisingly quickly and I was glad to room was basically empty except for us and 1 or 2 other people who would step in then leave soon after for their appointments, giving us free roaming.
12pm finally came round and first bloods taken, we went on a wander to find a restaurant. Here we were forced to pass a tunnel in Hammersmith Hospital which I really hate. It's a lengthy picture of an underwater scene containing rock formations and dolphins. As you walk along the passage, it gives the sensation that you're walking out of the water onto the beach.
Yes, it's actually quite lovely, but being under water can freak me out so the entire painting actually raises my nerves as I walk through it!! I made the statement 'At least it's not spiders' to which Tom responded, 'no that's the other tunnel...near the ECG centre before you exercise. To really get your heart rate going'.
Found the restaurant and had some stew with rice. A bit sad and tasteless to me, but it's amazing what not eating for 4 or so hours, then having tons of blood taken can do to the appetite: Tom, bless him, was in a state of bliss with the food, caffeine and cake with custard.
As it was now midday, we figured it should be warmer outside, so we went and found ourselves a sun patch. I sat with my back to a bollard on the pavement and Tom lay with his head in my lap to try and get some rest before the next tests.
It's funny how lying on a pavement in the sun, by a hospital can get you a ton of attention, either by people staring at you, or a selection of health professionals confirming we were actually ok. I had to give off a dazzling smile and 'everything's fine' a few times!
After a few minutes of that, last bloods were taken and we went to the ECG department were Tom would undertake the most daunting test....the exercise test. Yeah, save the best til last, right?
We got there 45 minutes early and here Tom took the opportunity of an almost empty waiting room and lengthy sofas to just...sleep.
The Exercise test was then had and I called my parents to confirm we'd be on our way home soon.
Here my mother informs me we have tea and Tiramisu waiting for us when we get back home.
Tiramisu is Tom's absolute favourite dish. And oh he was fed all the Tiramisu.
It wasn't the end of the day for us, however, dress rehearsal was next.
And it was during the second act that my anxiety began to peak.
I was exhausted, I was nervous and I kept getting the same mind blank I get when I stand up from a chair, go to another room then think 'why am I here again?'
That further fed my anxiety.
I walked up to Tom and pre-warned him there was a chance I would freak out after the show.
Holding back an anxiety attack when you know a group of people are relying on you is one of the hardest things I've ever done. Epic use of skill here.
The crunch came when the show ended, I picked up my chair and realised it was hooked on something. I shifted it (in the dark) and crash! A glass breaks. Oh god!
Managed to get through the bows, ran back stage, got changed, ran to the cafe and curled up into a ball.
Nope, that didn't work.
Run back stage, found Tom and said 'Tom...need you...now'.
Instantly, my brain engaged 'you're with Tom now, you're safe' and I managed to get behind the scenery before collapsing and hyperventilating. Tom managed to get me breathing and relaxed enough to go back out and curl into a ball in the corner of the stage (where Tom and those in charge could see me, but others couldn't. I put on my music and shut off.
The wolf hound was now up, awake and on the prowl. I needed to be near people, but also couldn't face people talking to me as I would go for them even if they had the best of intentions. I actually think I may have shocked a couple of people who asked me if I was ok, as I was deeply in feral mode at that point, a state they'd never see me in.
The next day, I woke up to depression. I'd completely lost confidence in myself as an actress and my self-esteem was lower than the floor boards.
Fortunately, I had counselling that day and I followed that with a nap which seemed to help.
After a horror previous evening, I'm delighted to say, first night of Hayfever went off beautifully and I came out the other end smiling.
Now just to wait just over 2 weeks for Tom's final result.
Honestly? I'm dreading them.
Monday, 16 June 2014
Last night was the best night's sleep I've had in a month. I actually slept in past 9am this morning, which is novel. This may now be the reason for my sense of self-satisfaction today, but I think my recent discovery also plays a part.
Since the day of the anxiety attack, I've been plugged into my music. Even when I'm around people, I've always got at least one earphone in. When things get too much or I just need to turn off, I walk to a secluded area and turn the volume up. When I'm in a conversation, I turn it down. But still have it there, in the background.
This may sound rude, but it's actually helped. In two ways:
1) It acts as a form of focus. When I sub-consciously start tuning out my surroundings, despite needing full attention, I become more aware of the music I'm listening to at the time. On realising this, I can actively pull myself back. Kind of like rocking backwards on a chair then suddenly being more aware of gravity than you were before and that's what's about to pull you down.
What made me decide to put together a blog about this was a moment I had at set building the other day. I was tired and felt myself flag despite my earlier burst of energy (eg being up, about and conversational). So I sat in the car with my music and just stared out the window. After about 10 minutes, I suddenly realised that my mind was completely clear. I mean completely. This is an extremely novel sensation for me and I revelled in the fact that for at least a few moments; the neurosis and worry usually in the back of my head had gone faint. It was a very weird feeling.
2) It creates what I can only describe as a prosthetic emotion for me to focus on. As I'm now being forced into a level of vulnerability due to my counselling sessions and, in turn, my empathic levels are on overdrive, music helps control that by encouraging a set of emotions enforced by the music I've chosen.
As this new emotion is then based on something I've chosen, I can further manipulate my emotions to behave in accordance to the situation.
Basically, listening to music allows me to set my own emotions levels and in way, ground me.
Just as I'm writing this entry about using music and its effects, Tom's playlist, set on random, has begun to play 'Above you, Below Me' by Badly Drawn boy.....the music for our first wedding dance. Haven't heard it in at least over a year :)
SHOW WEEK PLUG
For more information visit: http://www.purpletheatre.org.uk/
Thursday, 12 June 2014
[This is one of the hardest entries I've written to date. I think I've spent a good 4 hours working on this one].
On Friday 6th, I had the first anxiety attack I've had in a while.
It's been so long, I'd actually forgotten to recognise the symptoms and it caught me by surprise, though did explain why I've been feeling so rough the last couple of weeks. Since I started my counselling sessions, in fact.
Well, I've been through a lot in my 30 years, which has caused me to develop some rather dense mental armour. This in turn allows me to get with my life...having successfully come out the other end of particularly difficult situations so feeling that little bit stronger.
However, these experiences have created a metaphorical wound, which I keep covered with both a bandage and armour. The bandage is there for when I drop the armour, and am open with someone, but not as intensively as I could be.
Occasionally, when I'm in a safe and quiet environment, I'll remove the armour and bandage to clean the wound. Then put everything back on again.
Recently, as a form of protection, I've kept the wound firmly covered, very rarely even revealing the bandage because I feel like the wound is getting bigger.
But, thanks to my medical circumstances, it's now reaching the stage where if I keep the wound bandaged and perpetually under the armour, it threatens to spread to me on a physical basis (eg my falling ill every time stress hits because I refuse to mentally accept what's happened).
The method of quickly cleaning it then replacing the bandage every so often isn't quite enough any more. The healing now needs to progress to another level so I have to risk showing it to others and accepting their help.
So I agreed to counselling.
For these, I need to reveal the bandage and more, but try to at my own pace, very very cautiously revealing the actual wound itself.
Every so often, however, a piece of bandage I wasn't expecting comes away of its own accord, revealing the wound far quicker than intended.
On a daily basis, in the back of my mind, I sub-consciously protect myself by thinking if I remove the bandage for too long or in the wrong place, there's a strong chance of further damaging the wound. Therefore, when a piece comes away without my anticipating it, my vulnerability, sensitivity and thus empathy levels go into overdrive. On top of this, if the wrong kind of balm goes near the wound there's a chance it could hurt like hell. This has happened to me a couple of times in the past so I protect myself from that happening again (thus why I get aggressive/defensive if I become vulnerable at the wrong time).
Accepting this kind of help is very difficult. Especially when I'm been so used to hiding it from people (protecting them).
I'm strong. I hate showing weakness. I've done it before and been made even weaker. So the armour is set and firm. Again...the Sadira of my brain.
Recently, through slow encouragement, I've started opening to a select number of people, but even as I start to peel back the bandage, the alarm bells in my head go off and I'm mentally screaming 'put it back! PUT IT BACK!!'
This sentiment first actively revealed itself at my last counselling session when I suddenly realised we were talking about something particularly sensitive and I really didn't want to be in that room any more. That feeling of needing to escape, however, spurred me on, forcing me to fully accept that that part of the wound had now been revealed.
I have noticed when a particularly sensitive subject comes up and I can almost physically feel her probing the wound as she helps clean it, I really struggle to look at my counsellor, instinctively pulling away. I don't realise I'm doing it until, in my peripheral vision, I notice her lean, trying to slowly pull me back.
I recognise when she does it because I've used this technique myself: sometimes the recipient just needs to look away to think about what they're discussing and get their thoughts straight.
However, as soon as they seem to start losing themselves, it's ideal to look them straight in the eyes as this forces away any fiction they've managed to build up in their heads and gives them something more solid to focus on. It's terrifying for them, but sometimes has to be done. You've just got to know the right moment to do it.
Due to these sessions, I've now started walking around with a partially revealed wound in my mind, so my sensitivity levels are up. I've still got a mask to help me through daily activities and social events, but I'm still very aware that I can't use my armour as much as I'd like to. Because if it goes back up, I have to go through the struggle of removing it again. And that's a huge step backwards.
I don't know how I come across to others now. I'm very aware that the wolf hound (see previous post) is definitely up and awake. This means that although people close to me know how to handle it, those who aren't as closely involved in my situation risk getting bitten and I can't allow that. This is when I may come across as closed off or aloof. I can't describe the exact behaviour as I'm on the inside, dealing with the situation.
And this vulnerability makes me susceptible to emotional situations. The wound in my head is breathing, there's a strong chance of getting hurt....so the anxiety attack peeps its ugly head up again.
Anxiety Attack - a personal description
For me, life is seen through a windscreen. Sometimes this window can get clouded with cotton wool, or turn into a fish bowl (this is when I'm disorientated and can effect my hearing and concentration).
My thoughts are like a Teleprompter and every so often, negative words pop through and carry an array of emotions with them, giving them extra weight. You can tell when this has happened when I physically wince. But then they're gone just as quickly.
When an attack begins to wake up, the negative comments start to develop more substance and some friction, preventing them from passing through as easily. Then one gets stuck and makes base. Another comes along and gets lodged into the first. More and more come along and stick until you have an inky, black, murky stain on the window and nothing...but literally nothing will shift it. A bubble of logic (either my own construct as I try and pull myself through or an external voice) comes along and pokes it, tries to cover it up, ram it, but it won't shift.
I can sometimes still see the world around the stain and, like a drowning man, try and ignore it or work past it. But I know the stain is still there.
Logic doesn't work. It just consumes the logic and denial at the real world hits home and hard.
Sometimes, if I'm lucky, something gets under there and shifts it completely off, helping me work past it.
But if not, it gets bigger, darker, heavier and you start to physically feel the weight.
That's when I'll start rubbing my hands. Putting pressure on another part of me to focus away from the pressure in my skull. Or I'll rub my head to try and soothe the pressure. One of the bonuses of short hair!
If none of these work and it overwhelms me, it shatters. And so do I.
The Day of the Attack
On Friday, I wasn't myself. I was dealing with a number of situations which I felt were spiralling out of my control and at one point I called Tom at work and found myself becoming agitated over a subject I'd usually have no qualms with.
I was getting progressively more and more nervy, trying to resolve issues and get my head in order.
But it just wasn't happening and this was throwing me even more out of kilter.
Enough was enough. I sent a quick text to a mate in the form of a basic 'gah!', shoved my headphone on, music full blast (to try and temporarily screen the window and the stain with my own images raised by the music) and started washing up/cleaning the kitchen.
When these attacks rear, I now remember that I clean and tidy. Really clean. It's my control over my own situation.
I have little recollection of the actual cleaning process. I just remember trying to drown out everything that seemed to take place in my head, but feeling worse because it just wasn't happening.
I suddenly realised I had tears streaming down my face and my chest was constricting.
At that moment, I received a text from my friend and in response began to write the words: 'I'm just terrified of....everything'.
And that's when it clicked something wasn't right and I broke.
The combination of the loud music, the texts and the actual attack seemed to finally push me through and the storm clouds began to clear.
Unfortunately, after an attack, a person can feel weak, with a dull chest ache for pretty much the rest of the day.
Did you know...
The chest pains encountered during an attack can, in fact, further aggravate the issue as the subject may feel that they're having a heart attack and make the whole thing worse. However, knowing the difference between either attack can actually help the subject work through it:
the subject will begin to hyperventilate for long periods of time, causing bloating from excess air and thus cause pain in the centre of the chest. Therefore, the subject needs to be encouraged to take a controlled deep breathe (4 counts), hold it, then slowly release. Repeat until calm. Breathing also doubles as focus.
Work them through the attack, don't push them to get to the other end as that makes it worse, putting further pressure on them.
I find that when I have an attack, physical contact with another person can help bring me back to myself as it grounds me.
Heart Attack -
pain from this attack is focused on the whole left side, including arm, chest and even jaw.
This is a whole different kettle of fish so whilst an ambulance is called, keep subject calm and get them to kneel. Encourage them (physically hold them if needed) to hold both their shoulders back and take deep breathes to help expand their chest whilst waiting for medical assistance.
With this knowledge, an anxiety attack is actually easier to deal with because you know you're not in any immediate danger and just need to pull through. Rest is recommended after an attack to let the mind and body recover.
How am I now?
For one, I'm very aware of my chest. I can still feel hints of the tightness/a dull ache in the centre, which I try to work around by sustaining a good posture and doing deep breathing exercises.
The ache doesn't particularly bother me, I'm just very aware that I've had an attack and could have another.
I'm also on the alert. It's like having a neon sign constantly in my peripheral vision. It can't just be switched off. Telling myself, 'I'll be fine and won't have another attack' isn't an option. I just need to be ready in case it happens again. Because I know it will. I can feel it in my body.
I thought I was over them...clearly I'm not. Preparation is my best form of defence.