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:

Tuesday, 15 July 2014

London Bridge Walk and Kidney Failure Symptoms

13th July saw Mum, Tom and myself attend the London Bridge Walk for Kidney Research UK.

A turn out of over 1000 people - the warm up

Mum getting ready

The kidneys are designed to filter waste and toxins from your body. When they start to fail, this job isn't done properly and you start to feel the build up as a dull ache/itch.
Standing still for too long can set my legs off. Walking a lot without much sitting down can set my legs off. I tend not to realise they're in a dodgy state until I stop moving completely as the walking can actually act as a form of morphine, stretching the leg so I don't feel the ache.

Now I like to walk. During the tube strikes several years back, Tom and I would travel to Paddington then walk all the way to Euston. We did this for a week, passing parks, in the sunshine. It was great (til the last day decided to throw plumes of pollen in my face and my eyes suffered for it)!
But this walk pushed my limits and I was really feeling it by the end! I was originally going to be part of the cheering team. Why did I swap? Well, given the fact that I've recently been suffering from depression, I wanted to 1) feel like I was actively doing something to make a difference 2) support mum who was raising the money 3) get some exercise.

It was totally worth it, raising over £650 for Kidney Research UK! Again, I cannot state enough thank you's for those of you who contributed.

There were over 1000 people doing the route shown below:

I think we were over the 3rd bridge when it started to really rain. That's when we saw people with ponchos and wondered how we'd missed those!
That and the crush of the London Eye crowd were the two things I didn't enjoy very much. I'm not a huge crowd person (unless it's all for the same thing eg like before we began the walk), so I was left feeling a little uncomfortable during that.
Oh yeah and the clown....I don't like clowns. And this one squeaked. Fortunately, he wasn't too close to us, but the walk became quicker when I saw him. I really don't like clowns and this one didn't look too friendly!!

However the whole walk itself was extremely rewarding and just as mum and I were started to lose it, we saw the end.

Here's a sample of photos taken throughout the day. The middle one marked when it started to pelt it down and we had to take shelter. Tom was with us for the first hour, then had to head back home as there were duties calling him and we hadn't realised how long this would take, but I love him for having come along in the first place to show his support.

The two photos in the collection above, in the bottom corners are as we started to approach the finish line. I kept thinking 'If I stop, I'll never start again' and here mum, bless her, told me to turn around so she could get a photo. That look on my face is amused despair as I wanted a photo but also really just wanted to get to the end!

We got medals for our efforts....then I fell onto the grass and refused to move. After a few moments, mum convinced me to stand up to have the photo taken.
Getting home was a breeze and I was met by Tom at the station. As I got in the car, I gave him a blank stare which I think spoke volumes of how I'd forgotten to brain.
I plonked on the sofa, then had to fight the compulsive need to get up and keep walking! My legs and brain were so wired from the walk, I had to exert effort to stop myself getting back up so I could rest.
I woke up half an hour later with no recollection of having fallen asleep in the first place.

The next day, I couldn't feel my legs. When I could, it was unpleasant. But again...totally worth it and now I want to do more!!

Some medical facts:

Now in the light of my having done the walk yesterday, I did some quick research into kidney failure and came across the following facts which may help readers understand the symptoms better. Bear in mind, Kidney Failure is known as the silent killer because you generally don't get really obvious symptoms until it's too late. The symptoms creep up on you so slowly, it's easy to mistake them for 'just part of who you are'.
The only reason I was 'caught in time'...ish (pre-dialysis) was because I kept describing my day to my friends and in the end, they emotionally blackmailed me into going to see the doctor with 'that's not normal!'

Note: these are the different symptoms...not their order because I don't have swelling or rash...yet.
Also - some of these are a tad graphic, depending on what you classify as 'too much information'

Symptom 1: Changes in Urination - 
Kidneys make urine, so when kidneys start to fail, urine may change.
  • You might have to get up in the night to urinate. 
  • It may be foamy or bubbly
  • You may have to urinate more or less often 
  • it may contain blood
  • You may have difficulty urinating
Now the last one hit home for me. Before I started taking blood pressure medication, I actually had physical difficulty in passing urine. To me, the bladder is like a water balloon: when it's full of liquid, you squeeze it and liquid comes out with no difficulty. I was actually having to create pressure to get decent results. When I started taking medication, the difference was actually shocking.
And I thought the foam was just from my having applied pressure. Nope.
Also, urine should be as clear as's basically just a liquid passing through you, coming out the other end. If you get a small sample and look at it in the light, if it's got bits in it...that's protein...and shouldn't be there.

Symptom 2: Swelling - 
Failing kidneys don't remove the extra fluid they need to so these build up in the body and cause swelling in legs, ankles, feet and/or hands.

Symptom 3: Fatigue - 
Healthy kidneys make a hormone called erythorpoietin which tells your body to make oxygen carrying red blood cells. As they fail, they make less of this. This is anaemia and means your muscles and brain become tired very quickly. This now means that stairs/steady slopes are a challenge.
I'm currently on EPO injections to combat my anaemia. A while back, something went haywire with my order and I wasn't unable to take them for 2 weeks which meant I did an unintentional detox of the medication and cleared it from my system. I felt abysmal after the first week and a half and it made me really appreciate the EPO after that.

Symptom 4: Skin Rash / Itching - 
Kidneys remove wastes from the blood stream. When they fail, the waste builds up and can cause severe itching. This is another symptom I don't think I have. I itch...yes...but I don't know what's normal to others.
What I do notice is there are times I struggle to get comfortable. If a person's sat next to me and they notice me move a lot or generally fidget, it's because I'm horribly aware of my skin and trying to getting comfortable. It's almost as if I can feel the hair on my skin being misdirected.

Symptom 5: Metallic Taste in Mouth / Ammonia Breath - 
A build-up of waste in the blood (called uremia) can make food taste different and cause bad breath. You also notice you eat meat less or lose weight as you just don't feel like eating.
I've still got a very good appetite, but it's literally just occurred to me that this symptom does in fact happen to me as once in a while, I'll randomly get a very strange taste in my mouth that is more noticeable when I exhale through my nose. Like an after taste.
Once a month, I'll also get a bad breath normally associated to feeling fluish and unwell or even a stomach bug. Despite feeling fine.
It's why I take extra good care of my teeth and carry gum around. My way of combating bad breathe.

Symptom 6: Nausea and Vomiting - 
A severe build up of waste in the blood (uremia) can also cause nausea and vomiting. Loss of appetite can lead to weight loss etc.
This hits worse once a month. 2 weeks or so before hand....when everything starts prepping, it's like my entire body conspires against me. Like normal, but with more elements thrown in as everything else wants to join in. I feel nauseas and uncomfortably sensitive, like my skin is more alive than before.

Symptom 7: Shortness of Breath -
Trouble catching your breathe can be related to the kidneys in two ways: First extra fluid in the body can build up in the lungs. Second, anaemia can leave your body oxygen starved and short of breath.
A couple of years back, I used to be able to run for the bus, or around a field during a game with no difficulty. Now....not so much. It's extraordinary the difference a few years has made.

Symptom 8: Feeling Cold - 
Anaemia can make you feel cold all the time, even in a warm room. Given I also have bad circulation and Raynauld's (a massive loss of circulation in my finger tips which turns them blue), the kidney failure doesn't help.

Symptom 9: Dizziness and Trouble Concentrating - 
Anaemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems and trouble with concentration and dizziness. Yup, yup and yup. Especially annoying when you're on stage.
This is another reason I suffer anxiety. Forgetting means my level of organisation plummets, I can forget important things or get distracted at the worse moments. I then live in fear of upsetting people.
I've had conversations with people where I'll ask them a question, then zone out before I've finished the sentence only to zone back in 2 seconds later realising I haven't heard the response. That's why I use music.
If I hear the music when the person's talking to me, I realise I've zoned out and tune back in quicker than without.
It's here I'd like to add how much I appreciate the patience my friends have with me.

Symptom 10: Leg/Flank Pain - 
Some people with kidney problems may have pain in the back or side related to the affected kidney.
When I stand for long periods of time, my back threatens to go. Which is why I sit on the floor if the opportunity arises, or sway. Side to side swaying can help the tension in my legs and give my back the illusion of movement. I occasionally find lying on the sofa with my legs up in what others may classify an awkward position helps. Sometimes it gets so bad, Tom has to massage the muscles around my thighs and calves.

If these sounds familiar for yourself or anyone you know, go to your doctor. Even if it's not kidney failure, it's worth trying to catch it before it gets worth. Yes, I need a transplant, but it could have been a lot lot worse for me.
It's a lot harder being on dialysis than it is preparing for a transplant.

Thursday, 10 July 2014

Paired Pooling update and a little extra


So, we were at the hospital for 4pm yesterday. Checked in and sat in our usual seats. No...really. Our usual seats. Every time we visit this hospital, we've always, always sat in the same seats, no matter who's in the waiting room: they're the rarer chairs of the room, against the wall, facing the rest of the room and opposite the TV. Tall backed and cushioned I find them the most comfortable. And they're always empty when we arrive. Yesterday, at one point, there was a change in the arrangements, which you could say almost reflected what Tom and I are going through. He sat next to me, then popped up to go do something. After he left, someone came and sat down in his chair. Tom came back and had to sit in the chair by my side. Someone else had joined us at 'our' chairs.

We were soon called up and went into the appointment room. I was then asked to wait outside for 10 minutes as she spoke to Tom (he later revealed what they'd discussed, but I think it's wise to leave that bit out. Nothing hugely private, just part of their process I'd rather not reveal). Then I was called back in. Lovely consultant, straight forward, but sympathetic. She seemed to gauge our responses as she highlighted particularly difficult bits of information. I say this because I've encountered doctors who just run in like bulls and can bull doze you down.
Conclusion: Tom's as fit as a horse. It's like everything that's wrong with me, he's the complete opposite side of the scale. Which is great! But terrifying.
Also randomly learnt that both kidneys can actually vary in size and the surgeons have to work out which is the best one to remove. I didn't know this. Or maybe I did and I'd forgotten.
She highlighted the usual risks of surgery, but then added that those risks equate to crossing the road.

So what's next? This is where the world started to spin a little for me. This consultant was working off facts and figured, not my own personal medical background which is what had me put onto this path in the first place, so there was some curiousity in her as to why we were taking this step so 'early' on in my state. As I'm pre-dialysis, I'm not urgent, and the medical team are often reluctant to operate on someone too early, in case there's a rejection/something goes wrong and a previously somewhat 'healthy' person then undergoes 'unnecessary' complications despite having been fine before the operation. Here's where I added that my specialist was behind my decision as the illness is starting to affect my every day life to which she added 'Ah, so there are physical symptoms'. Although I understand why I'd be undergoing this surgery, I still feel a little guilty that I might be taking a healthy organ from someone else who needs it....despite the fact that I know this wouldn't happen due to the system they use to choose. The wonders of the human brain.

She's now going to speak to my specialist. I'm going to see him early August and that's when (I'm guessing) everything's going to be set in motion. The next registration for paired pooling is in September, so everything will have progressed smoothly.
I've still got to wait for the last compatibility test to come through so it'll be interesting to see what happens if that's unlike the other tests and comes through, but for the mean time, my mind is on the paired pooling.
As I'm not an urgent case, I could wait up to 2 years to see if there's a match. We were informed, if nothing came to fruition, it was possible they'd consider the plasma exchange (remember the Thames clean up project I mentioned in another post? That). However, there's reluctance in doing this because it would mean putting me under 2 major treatments, that and the transplant which risks putting the patient under some strain.
There's only so much a patient can take. My specialist has constantly highlighted that they want to do what's best for me but also ensure that I live a daily life as normally as possible.
Understandable. However, I think a worse strain comes from knowing you're ill, not having anything done about it and knowing there's things you want to do, but can't because you're unwell.

I currently feel like Mario from the computer games, standing before one of those interminable gaps which require timing and energy to get across. I can just about see what's ahead of me now (though there are still about 3 prongs to the path I'm currently on), but a number of chasms to leap over.
This is why I'm doing this early. I'd rather do the treatment now and get on with life than continue tired and fed up waiting for the time to pass before the inevitable 'ok let's have that operation now' moment.

Next step: meeting with the specialist / waiting on the compatibility results.


If you've got this far, well done. Now you'll get a true insight into my head.

What you're about to read isn't being influenced by the cold. I actually slept really well last night so I've some sense of clarity.

Currently being massively ear wormed by 'Infected Mushroom''s 'Killing Time'. Just read the lyrics and realised how morbid this song actually is, but being wormed for its slow melody and beat rather than the lyrics.

I'm not going to lie, the point of this blog is to be honest. Right now I'm going through a difficult time. But I don't want tears, I don't want sympathy....I'll probably bandy away any attempts at 'are you ok?' with a simple smile and carry on...if I need anything more, I'll ask for it.
Yes. The armour is back on. This time with a shield. Not firmly, just enough to help me get through the flames currently burning at me, trying to leave me scarred.
I've become cold. Even to myself. Because I know if I don' may break me. I just need to work passed the rough patch and I'll come out the other side unscathed.

Why am I reacting like this when the news was good?
Because it seems to be never ending. Even after entering the paired pooling, I have to wait because I'm 'not urgent'. After that I may have to under more treatment to allow me to have a transplant. Years and years pass. I feel can't do that which I want to do because health is holding me back. And even if I can on a physical basis, my head is on another level which prevents me from doing so.
I've got to keep jumping through hoop after hoop after hoop and some of them aren't easy to climb over. And I'm taking people with me and potentially hurting them which I don't want to do.

Remember: I don't want sympathy. Right now, I'm working it out in my own way. If I need help, I'll reach out. I'll get through to the other end. I always do.

Tuesday, 8 July 2014

The truth....

This written post is an introduction to the video link above. This weekend, I attended a larp event and played a monster character who I later realised was a little closer to the truth than I realised.
I usually base the vlog on a written post and use that as a 'script' whilst trying to keep it as 'natural' as possible.
As I wanted this entry to be from the heart, I haven't written one, I didn't practice it in advance....this is just me. Speaking to the camera. Showing the real me. Confessing to a reality based around the monster role and the experience.

Writing the blog would have removed the raw reality I wanted to demonstrate. Some of the statements I may not make 100% sense, but that's because they work with the knowledge I have in my head which I somehow seem to accidentally avoid sharing...almost like I'm talking to myself and forcing myself to accept a couple of things. Which I think in a way I am.

I actually came to a couple of realisations whilst I did this blog. See if you can spot where.