You don’t always get what you want…

It’s a beautiful autumn Sunday and despite feeling physically rubbish I’m actually quite, dare I say it, content right now. It’s the perfect morning for sitting and reflecting and just feeling at peace with the world.

It is hard to believe that it is now 9months on from my initial 2month challenge to keep off dialysis and I am still here and still medication and dialysis free. The challenge isn’t exactly over – I will still have to work every day to keep the level of health I have managed to claw back over the past few months. But today I am focusing on what a massive achievement it is that I have actually come this far. To be perfectly honest, when I initially set myself the challenge, I wasn’t sure it was possible. It just goes to show that it never hurts to try.

And that leads me on to looking at the rest of my life.  I have never made happiness my goal. Since a young age I have never believed that a long and happy life was my destiny. But as I’ve grown older I have looked more and more to achieve what I once considered impossible – a sense of contentment and peacefulness at being here, at just being alive. That is more achievable and more meaningful to me than happiness can ever be, because happiness, no matter how great, is only ever fleeting. We all have moments of happiness, but it is how we feel after that initial head rush has worn off that I am interested in.

Right now, I’m content in a way I never remember being before. Yes, let’s be honest, heart and kidney failure are not exactly ideal, easy or nice. But I’m not going to let that dictate the rest of my life. In the last 9 months I have settled into myself and into my life. I have forgiven myself for things that were never my fault to begin with and I have given myself permission to be here. And with that has come a lot of good things – I now live with someone who loves me and is good to me, something that I never thought was a possibility. I also have a life. An actual life, with friends and laughter and normal things like that. That might sound a little strange, but given my past it is hard for me to let people into my life, I have always hidden who I am, but now there is a host of people who accept me and seem to care about me anyway. That is an amazing feeling.

I also have my work. I love what I do and now I am able to do it on an even greater level than before. Yes, my health impacts it, but I will never stop doing what I am passionate about. In fact, this month sees me launching two new businesses! And I am studying too, a degree in psychology both because it fascinates me and because I hope to be able to use it someday to help people like me (I’ve never exactly been one for resting on my laurels!)

Which brings me to my point (yes, I do actually have one for a change!) We all know the saying, immortalised by the Rolling Stones, ‘You can’t always get what you want, but if you try sometimes, you get what you need’.  It used to really really piss me off to be honest. The same way that people saying ‘everything happens for a reason’ used to make me rage inside. But actually, it is true, at least for me right now. All these things I have now are things that I wanted 3 years ago. But actually, I wasn’t in a place 3 years ago where I could have had them, I needed to work my way to this place where, not only am I content, but I actually stand a chance of being able to stay that way. I got what I needed to enable me to get to a place where I would get what I wanted – if I persevered.

There are more things I could share but I think I am already at risk of veering too much into the strychnine sweet territory that irritates me, and probably all of you too. So let us just leave it that, right now, all is good in my world (which isn’t the same thing as easy, just for the record!), and for that I am beyond grateful.

Although a new body would be nice if anyone has one going spare.

Prepare for the worst. Expect the best.

I’ve been planning my Will today, which is obviously not the most cheerful of things to do. Now, don’t get me wrong, this isn’t me being defeatist, I actually believe that everyone should have an up to date Will, whether they are ill or not. None of us know how long we have or what’s around the corner, so to my mind it is better to, as the old saying goes ‘prepare for the worst, expect the best, and be happy with anything in between’.

I was discussing this with the newly ordained Brendan Johnson (@brendanjota) a few days ago. There is such a culture of fear around talking about death in this country, and yes, it’s not the nicest of topics, but thinking about your Will doesn’t mean you will die (well, lets face it, we are all going to die, but having a will won’t speed the process along!) just as discussing what you want to happen if you become ill or on life support doesn’t mean it will happen. What it does mean is that the people you leave behind when the inevitable happens, will know what you want. It is a last act of love, if you like, to take the burden of decisions off the shoulders of people grieving your loss.

Unlike many people, I have never really had a fear of death, which is pretty lucky. I can also be fairly flippant about talking about it, which I realise can be difficult for some people to understand. It’s just the way I deal with it I’m afraid. I don’t embrace death but I don’t run away from it either. However I am too stubborn to die just because a doctor tells me I should! Which could mean I live forever at this rate…

It is odd though, because there is a sadness attached to the thought of dying now. That’s quite new for me to be honest. But, for the first time since my daughter died, there are people for me to leave behind. People for me to live for. People that, I can just about accept, actually love me and might miss me and be sad that I am gone. So it does make me a little sad when I think about not being here anymore. But mostly it makes me happy that I have those people in my life now. These are the people that keep me going and help me along this journey. And it would be a far more tedious journey without them!

Thinking about my will has helped me see how many people I will be sad to not see again. How many people I now have in my life that I care about and love (and who hopefully care about or love me too). And how many people I might want to inflict my cat on when I go! So I’m actually feeling quite warm and fuzzy believe it or not. It’s nice to be in a place where I have things to lose and to not want to lose them. It’s nice to have things to live for again.

And the best thing is, now that I’ve prepared for the worst, I can get on with enjoying the present!

An Epilogue

I thought I had better write a short post after the overwhelming response I received to my last one – Nine Lives Live For Ten. As well as the beautiful comments written on the blog itself I was also inundated with tweets. I wasn’t expecting that, so thank you guys. It’s amazing to see how many of you care and are with me on this journey.

To clarify, I’m not giving up. It’s not in my nature. As tough as the world seems at times I try to hold onto the beauty in it. The hope in it. The kindness and love in it. The fact that tomorrow is always another day and you never know what it will bring.

I just need to rethink, regroup, refocus. Plan my way through the latest challenges so that I stand the best chance of a future that I can be proud of. However long that future may be.

My goal in this life has never been ‘how much stuff can I accumulate’ (although I do like a good shiny thing as much as the next person!) it has always been ‘how can I use this to help others’ and that’s where my focus needs to be right now. Creating something that can carry on long after I’m no longer here.

But have no fear, you definitely don’t get rid of me that easily!

Nine Lives Live for Ten

It’s the early hours of the morning as I write this, and I’m fairly sure nothing good can come from a blog post written at that time, so please read on at your peril…

Believe it or not I consider myself to be luckier than most – the cat with nine lives I’ve been called. Death has always been a shadow beside me ever since I was a small child. I should have died at least 8 times by now and always, at the eleventh hour (or rather, with my bad time keeping, the eleventh hour and fifty ninth minute) I was saved in some way. I have been abused, raped, drowned, shot, stabbed, in bad accidents, and declared terminally ill. That’s quite a lot for one little life.

It would be easy to say that the Universe has it in for me. That I am being punished for some unforgiveable sin committed in another life time. And for a long time I did believe that. As a child I was shown no love, no care, just horrific abuse, and as most children in that situation would do, I took the blame as mine. And, as is always the way, those first lessons we learn in life are the hardest to unlearn. And they also create our blueprints for the future. My childhood was filled with pain, fear and the threat of death. So it’s not really that surprising that these have been recurring themes throughout the rest of my life, is it?

Despite this, I do consider myself to be blessed. Surely my ‘luck’ should be defined by the fact that I have survived all these things, and not the fact that they happened at all? The events themselves do not define me, even though it may feel that way at times.

Instead what these events have done is given me an ever present sense of my mortality and that, as the old cliché says, you should live each day as if it were your last. And that has enabled me to do some amazing things and have some truly wonderful memories to look back on and be proud of. But I have also managed to keep my hope of a happy future alive and work towards this at the same time. It’s a delicate balance that I’m not very good at! And yes, I wholly admit that there have been times when giving up seemed like the much easier option. But always, as I am about to surrender, something reminds me of what it is I’ve been fighting for all these years. And that gives me the strength to carry on.  There are things that I want to achieve that will mean that all that I have been through has not been for nothing.

So, I’m sitting here tonight after a very difficult day and I am contemplating my mortality once more. I am thinking of all the things I have done previously and I am wondering where I go from here. How can I use this for the greater good? And all I can really think is…

I’m on my ninth life guys, and I’m approaching the eleventh hour…but I’m not done trying to change the world yet.

Thanks for all the fish

It’s been a long time since I updated this blog. As always life seems to have taken over.

It’s funny how you can find yourself in a place you never quite imagined. The life I have now seems so very different from the one I had when I began this challenge. And it’s not that the starting place was bad, I just didn’t realise how much else I could have.

And now here I am, 5 months later, working all over the country, in a new relationship and with more friends than I could shake a stick at. And these are REAL friends. The kind that never fail to make me smile, who make the day that little bit better and who offer to help me out when I am sick. The kind that make me feel blessed. And I hope I do the same for them. It turns out letting people in, pulling down the walls a little bit, can pay dividends.

I also find it odd that all these things have happened because of a networking site. I’ve talked about 4networking before, and I don’t want to wax lyrical about it. But credit where credit is due, without it I would not be in the position of strength that I am now. Or rather, without the fabulous people I’ve met there (and there are too many to name!), I wouldn’t. I even met my boyfriend (who conveniently lives at the other end of the country – trust me) through the network. If you’d told me that a year ago I would have laughed.

I was talking to someone at a 4N meeting on Friday and they were asking about my health, and it reminded me I hadn’t updated this blog. The truth is I have been both better and worse over the past month. I have been doing more than ever. Traveling lots, socialising lots, working lots. I have coped with it well for the most part – 4 months ago I would never have been able to do this much. And my heart is a little bit stronger, which is excellent. I can breathe easier, and you have no idea the relief that that brings.

And I have already succeeded in the challenge. I have managed to avoid dialysis for 5 months now. A miracle according to the doctors. In fact I even managed to improve my kidney function enough for my status to be downgraded. But, as usual, old habits die hard and I pushed myself too hard and took my eye off the ball. So I’ve gone downhill a little bit again.

I’ve now got another 3 weeks to improve my kidney function again before dialysis will inevitably have to start. So I’m taking some time out to make sure I can do that. If at the end of that time dialysis is still the route that is needed, then I will deal with that and all that that means.

But with friends reminding me to take care of myself, a greater sense of self worth and all to fight for, I’m fairly confident I will be able to beat the odds again.

And to all that are walking this journey with me, no matter how big or small your part, thank you.

How Am I Still Here?

I turned 27 recently. Not a milestone birthday, not even a big number for most, but it suddenly struck me that actually, this was a massive achievement for me. And, as with all birthday’s, it led to some thinking about life, the universe, and all that has come before.

I am more content with my life now than I ever remember being. I have a home, good friends, an over affectionate cat, a nice man, and my own business. Yes, I have the usual struggles with money (what is this elusive thing called a healthy bank balance?!) and of course the whole heart and kidney failure can be a bit of a bind at times (understatement of the day!). But, in general, I’m pretty happy with my lot. I never thought I would come this far or have so many good things in my life.

I was just 15 when I was given my first ‘terminal’ diagnosis. To still be here 12 years later? Well, even I don’t know how I’ve managed that! There has been a lot of hairy moments along the way, from stupid accidents (such as falling off a cliff whilst being chased by mountain goats) to times when I really thought that my health was defeating me (heart attacks are not fun!). And then there are the non health related problems, which are too many to go into here! The bad has, in fact, far outweighed the good in this little life of mine.

But I have a tendency to make light of my life. There has been so much darkness in it, so much heartache and pain, that I could easily have let it destroy me. And in some ways it has. Because this illness of mine is all down to that past. Down to specific events and down to the way I have reacted to it. Internalising my pain and turning into something physical rather than emotional. Because pain in the body is far easier to deal with than pain in the soul.

Having said that though, I have always managed to hold onto hope, no matter how dark things seemed. Instead of focusing on those events that have caused me pain, I chose to focus on the good things they brought to me. If I had never become sick, I would never have gone backpacking round Australia. And if I hadn’t done that, I wouldn’t have discovered homeopathy, so not only would I not have my career, but I also wouldn’t have my life. Each difficult event has led me onto a path that I would not otherwise have found, and introduced me to people who have taught me something important, or who I have been able to help in some way.

The cruel thing with life is that we often only see the benefit in the hard times, once we are out of them. When we don’t really need the comfort of knowing that we are being taken where we need to go. If you can hold yourself through the dark times though, or if you have people who love you enough to hold you through them, then you are often rewarded with something better. A few steps further along the windy path of life.

The hard times aren’t over for me, and I know this. I have long since given up on the dream of an easy or quiet life. But I know that whatever the future holds, and however long that future is, I will hold to hope and also continue to strive to make a difference, both in my own life and in other peoples. I have made it this far, I have survived this long, I don’t plan on being defeated yet.

And if I make it to 30, well, I’m going to throw one hell of a party!

Let’s Go Round Again

Push. Crash. Burn. Rest. Repeat.

There are some patterns we just can’t change. Whether because we don’t want to or because we don’t know how.  Or at least that’s what I was planning on saying on Monday, when I was originally going to write this blog post.

You see, the week before last, I ended up in hospital every time I left the house. I passed out in the supermarket one day, another day I fell and ended up with internal bleeding (fixed by homeopathic remedies thankfully!). I was exhausted, I was pushing myself too hard, and my body just couldn’t cope. But I kept pushing, because I didn’t want to let anyone down by canceling things, because I didn’t want to be seen as weak, because I just didn’t want to admit that I can’t do everything on full speed the way I used to. My way has always been to just get on with things, no matter how tired I am or how upset I am or how much pain I’m in. Pushing through is what I do.

And usually, despite the hospital visits, I would have just kept on going. I would have carried on carrying on until I literally didn’t have a choice but to stop. Which really isn’t the cleverest thing to do as then I would have been down for a long time recovering, defeating the point somewhat. And I know this. I know all the things I should do, I tell my clients these things, yet I fail to apply them to myself. Is that because I’m arrogant? No. It’s because I’m scared that if I stop, that will be it, I won’t get started again. And it is because I have always had to be strong and man up and just survive the best I could.

But things have changed wihtout me noticing, my life is a bit different now. I have people who care enough about me that they see that I’m struggling and they encourage me to stop. There are people that I know, if I needed something, would help. And there are people who would kick my ass if they thought I wasn’t going to get started again. In essence, it’s not just me in this little world of mine anymore.

So, instead I took a week off, worked from home, looked after myself, slept more than I’ve ever slept, ate good food, cuddled the cat and remembered to take all my remedies and supplements. The result? I feel better than I have done in a long time and ready to face the next few weeks. And believe me, that is a massive relief.

Does that mean I’m going to stop pushing myself? Probably not in honesty, I’m an Aries after all! But if I balance that with knowing when to stop, when to retreat into my own space for awhile, and putting my body’s needs first rather than last, I’m hoping I won’t keep getting to the crash stage before I stop. Because it’s actually not a weakness to stop before that point. I don’t actually have anything to prove. Everybody needs down time some times, everybody needs to reassess and take care of themselves. It’s not a bad thing.

And the truth is, everything changes eventually, whether you want it to or not. It’s better to be in control of that change than have it thrust upon you.

Reality Bites

It’s been a while since I last wrote. In all honesty that’s because I have had such a busy couple of weeks that I haven’t had the energy for anything else. I also haven’t really known what to say. It’s been a strange limbo time for me, not in a bad way, in fact overall it has been a pretty good couple of weeks, but I feel like I’ve been edging my way into a new life, a new me, and I’m not sure I totally like it.

I started this week being told that I couldn’t have the operation I needed, not for another couple of months at least. After the inital ‘oh bugger’ wore off, it has actually been a bit of a relief. I’d been putting off planning anything because I wasn’t sure how I would be after the op (originally scheduled for tomorrow) and now it feels a bit like I have some breathing space and a bit more time to sort my life out. Which I’m trying to do.

I’ve been travelling quite a bit the last couple of weeks, and I’ve also been a lot more social. I’ve enjoyed it and been glad to be busy, but it has taken it’s toll, and reality has bitten me on the ass a bit the last few days. The exhaustion has been worse than I have ever had before, I crashed for 14hrs the other day (unheard of for me – 3hrs is normally a good sleep!) and still woke up as if I hadn’t slept at all. My heart is actually behaving itself for the most part, but my kidneys have born the brunt of all the excitement.

It was on Wednesday, driving home along the M4 and so exhausted I thought I would fall asleep, that the reality hit me that, no matter how much I don’t want to be, I am a sick person. Considering that fact, I still think I do a pretty good job of getting out there and doing things…but the more I try and pretend that I’m not sick, the sicker it is going to make me. I HAVE to start making allowances for the fact that I don’t have as much energy or resources as most people. Otherwise I will be floored for weeks. It all comes back to accepting that I am not, in fact, Superwoman.

There’s another part to this too: if I am not superwoman, then, dare I say it, I might actually need other people. And that is a little bit scary for me. In fact, it’s terrifying. I have more people in my life now than ever before, and I know that there are plenty of people who would help me if I asked. And who have helped me even when I haven’t asked. But I still have the abused child mentality of ‘I’m not good enough’ and it is still quite difficult to accept that anyone could care.

But this is where my life is also changing. I don’t hate myself anymore. I know that people care, even if I’m not always sure why. I’m letting people in to my world, in a way I never have before. I’m letting people know me. And it’s scary and it makes me feel far too vulnerable at times…but I don’t have the energy to pretend to be anyone else anymore. This is me, this is my life.

The pinnacle of this I guess was allowing myself to be filmed this week. I would never have done this before. But now a little bit of my story is out there for all to see on sensibleeating.net

I may not like the reality of my life. But it is all I have and so I have to accept it so that I can have a future.  So, how does a little bit more me, a little more rest and a little less fear sound for a start?

Whose heart is it anyway?

I’ve been thinking a lot about organ transplants the last few days. I’m not really sure why to be honest, as I don’t qualify for either the heart or kidney transplant lists.

But I’ve found myself really wanting to encourage people to discuss the issue with their families, because even though you might not want to think about it, should the worst happen, it’s a bloody hard decision for your family to make on your behalf. And the sad truth is, many people refuse to agree to their loved ones being used for organ donation, because at the time that they are asked, they are in a place of grief and shock where they just want to keep their loved one how they know them.

Not making it clear what your wishes are means that instead of potentially saving someone’s life, your healthy organs will go to waste. And that makes me a little bit sad to be honest.

Personally I find the concept of a heart transplant quite strange. More so than a liver or a kidney. Even though the logical part of me knows that, at the end of the day it is really just a physical organ like any other, the illogical part considers it to be, well…the heart of me.

Think about it, how many sayings revolve around the heart? ‘She has a good heart’, ‘Listen to your heart’, ‘The heart wants what the heart wants’…What if that heart isn’t really yours? Would it change some fundamental part of you?

I know that even when I had frequent blood transfusions, I could feel my body reacting to this new blood as if it was a stranger that shouldn’t be there. I could feel it in my veins, and interestingly with the testing machine I use, I have shown up issues that I know are not mine if I test myself after a transfusion – is this the energy of the bloods previous owner?

The most dangerous thing about any organ transplant, but especially the heart, is the risk of rejection. Your body KNOWS this thing doesn’t really belong to it and acts like it is an alien, desperately trying to remove it and make you you again. So even though it’s there to save you, quite often the new organ is actually what kills you.

So I have been wondering lately whether a new heart would change who I am. Would I suddenly start liking Marmite and Celine Dion? (god forbid not!) There are so many tales of things like this happening, or even of people falling in love with the donors previous partner, that try as I might I can’t think of the heart as a purely physical object. It is made up of cells which hold the very essence of you.

Would I have a heart transplant if I could though? Probably, if I had exhausted all other possibilities. I think it would take a long time for that heart to feel like mine though…if it ever did.  Would I be less me? I hope not. But in a strange way I’m quite curious to find out…

So, what do you think? Is the heart just a physical organ, or would having someone else’s make you different to who you were before?

Fear and Loathing in North Somerset

I had a really good week last week, I went away for a few days and got to catch up with lots of people and even had an excellent evening at Laughterhouse in Basingstoke. It was great to be out and about and socialising and doing lots of things again.

But then comes the payback. Now, I don’t think I could ever be accused of having a ‘Pollyanna’ attitude, but I do try my best to keep a smile on my face and to be as quietly optimistic as possible. That’s been really hard the last couple of days though, so I apologise if this post is a little more depressing than I would like.

Since I came back home on Friday two things have happened:

First, the fear set in. My heart would not behave itself at all and I admit I started to get quite scared. Now, this isn’t really like me, but I think this new found fear stems from being on my own again. It’s the knowing that if I dropped dead tomorrow, I probably wouldn’t be found until my cat had already used me as dinner.

Not the most pleasant of thoughts I know, but I did say I was going to be honest! Anyway, I took some herbs for my heart and some flower essences for my mind, and both settled down somewhat. But then came problem number two…

I hate being a sick person. I’m 26 years old and I don’t want to have to weigh up everything I do and the toll it will have on me. I want to be able to go out dancing and enjoy myself without knowing it is going to cost me dearly. I want to be able to have a life, without that life nearly killing me.

I resent the fact that having a good few days has left me feeling awful and today I hate this body and this illness and all the things it restricts me from doing. And that’s dangerous because it can mean that I don’t pay attention anymore and push myself too hard because I don’t want to be that sick person who can’t do things.

I remember being 16, with a supposedly terminal illness, and just packing my bags and getting on a plane to Australia. Everyone thought I was mad. Was I scared? Probably a bit. But mostly I just wanted to enjoy the time I had left. And I did. I traveled and partied and had an amazing time. And I didn’t die. In fact I came back healthier than ever.

So, what’s changed in those 10 years? Well, a lot of water has gone under the bridge for a start. But more importantly, my illness has changed too. I can cope with tiredness, I can cope with pain, but when your heart is playing silly buggers and you can’t breathe it’s a very hard thing to ignore.

For what seems like the first time in my life, I am finding myself restricted by this body of mine. And I don’t like it very much. But I have faith that it won’t always be this way and that is what keeps me going. However, I also have to learn to accept my limitations, even if I don’t like them very much.

Fear and loathing have definitely been the order of the weekend, but hope and cheeriness shall be restored by Monday morning…