The Good, The Bad, The Decisions….

Today was an important day for me, getting test results back from the hospital to see what’s actually going on. The doctors fear: kidney cancer. My fear: my heart.

So, what was the verdict:

The Good
Well, I don’t have kidney cancer. And my leukemia isn’t back either. I was 90% sure this was the case anyway, but it’s good to have confirmation. My kidney (only one of them actually really works at all!) is managing to hold its own and is staying steady on the border of Stage 4 & Stage 5 (end stage) renal failure.

The Bad
The heart failure is a lot worse. Dangerously so apparently. And my blood count isn’t good either, which complicates matters a bit.  To be honest, I could have predicted this – I was hoping the heart wasn’t as bad as it felt, but hey, you can’t win them all.

The Decisions
The herbs are doing their job and I can stay off dialysis for a bit longer, so that part of the challenge is going well. Great! But I still need to improve the kidney function more, because that will help my heart and keep me off dialysis in the long term.

As for my heart? Well, they want to give me an ICD. It’s basically like a pacemaker, a battery that sits inside my chest with wires going into my heart to make sure it beats properly. The difference with an ordinary pacemaker is that an ICD also gives an electric shock if the heartbeat becomes dangerous. It will be my own internal defibrillator to stop me suddenly dying.

When they first told me this, I wasn’t quite sure what to think. At the end of the day, part of me is still rebelling against the idea. Why? Because it will make me an official sick person. You can’t pretend you’re not ill when you have to have something keeping your heart going. But if being an official sick person means that I am not as sick anymore, then that has to be a good thing right?

I said from the start that I wasn’t doing this to prove that natural medicine was better than conventional medicine. I believe both have their place and can work together. The herbs are helping my kidneys and keeping me off dialysis, which is great because dialysis would have a massive impact on my quality of life.

But the herbs for my heart are just keeping things at bay. I take them as needed – a herb when I need it to slow down, a herb when I need it to speed up, a herb when I’m on the verge of a heart attack. But what happens when I don’t have those herbs with me? Then you end up with situations last week, where I pass out in the supermarket. Not the end of the world, but a little embarrassing.

I’m very proud of the fact that I have not needed any medication for the last few years, and I don’t see that changing any time soon whilst there are herbs and homeopathic remedies that will do the same thing for me, without the side effects.  But this is different, having something internal to keep my heart beating for me is surely a good thing?  And once it’s in there, I don’t really need to worry about it.

It is a big decision though, and I still need to sit with it a little while. But now that the initial shock has worn off, I am feeling strangely positive about it all.

 

The Power of Connections

There have been two incidents in close succession this week that have made me think about the power of feeling connected to people.

One was after publishing my last blog post on Sunday, when (hope you don’t mind me mentioning this!) Tamsen Garrie called me. We didn’t actually get to speak, but it really meant a lot to me that she had made the effort, especially as I was feeling quite vulnerable about the blog at the time.

The other incident was on Monday. I’d had to go to the hospital for tests, and I’d forgotten how tiring and disheartening that can be. So, driving home, I was feeling distinctly worse for wear and just wanted to curl up and cry. And I would have done if it hadn’t been for a tweet from someone along the lines of ‘thinking of you, call me if you want to chat’. Nothing ground breaking there I bet you’re thinking, but to me it kind of was. Now, I’m not someone who can actually call someone when I’m feeling low, but just knowing that someone cared enough to offer made all the difference.

That one little DM (thank you Maz) meant that instead of curling up and crying, I logged onto Tweetdeck and jumped into the great pool of distraction and connection that is Twitter. I actually ended up having quite an interesting business conversation with @EtcEtcOnline, @TheRealSabian, @LisaBlackler and @SamSwinstead. It turned my day around.

And I realised something. Even though I have just moved to a new area where I don’t really know anyone, I feel more connected to people than I ever have. Why?  Twitter and 4Networking.

Both of these things have connected me to people that I would never normally have known, and to a support network that I have never had before. And, cheesy as it may sound, I wanted to acknowledge that and say thank you.

So, to those 4Ners, both in Surrey, Somerset and anywhere in between, that I have shared heckles and good times with over breakfast (and hopefully you all know who you are!), thank you. It’s always a pleasure (well, almost always!)

Since I’ve moved to the West Country, there are two 4Networkers who deserve special thanks for their support in helping me settle:
Mr Kim Hambley (@mrkimhambley) who always makes me laugh and keeps me in a ready supply of #kimbohugs.
And Liz Sparkes (@liz_sparkes) who helps me keep my head on straight and kicks my ass when I need it.

And as for Twitter? Twitter is my lifeline at present. I can’t really thank all those people I talk to, there are so many now! But there are some who have really stood out for me lately, and who do deserve special mention. But to anyone who connects with me, it is always appreciated, even those of you who only want me for my kitkats!

A big shout out has to go to Antonio (@tcib) my co-conspirator in some pretty weird conversations, but also one of my biggest supporters, and someone who has always been there for me, despite the fact we’ve never actually met.

And then there’s Maz (@lightndayphoto) and Belinda (@BR_McCarthy) – kindred spirits who always make me smile and help me keep @tcib in check – not an easy task!

Also Vic (@StarPs) who again I’ve not yet met but who I’ve had many an entertaining late night conversation with, usually revolving around men 😉

Jan (@PerfectVerse4U) …you can’t help but love her or fail to laugh at her tweets. Always guaranteed to bring a smile to my face, no matter how bad my day.

And others who I chat too often, and always look forward to the chance of doing so: @LisaBlackler, @SamSwinstead, @Dititoria, @BusinessGP, @CarpetCareSteve, @EtcEtcOnline, @KBBookeeping @Dingdongevents and @HelenDDavies.

It turns out connecting with someone, even if it’s just over breakfast or in 140 characters or less, can mean more than I ever realised. So, next time you tweet someone, remember, you might be making all the difference to their day.

Attached to life?

I’ve been having a bit of a bad few days, which is totally my own fault as I wrote in my last post about needing to pace myself, but obviously failed to listen. So, I’ve been feeling quite ill and tired, which starts off the ‘you should be better than this’ demons.

But yesterday I read a really interesting article by Tamsen Garrie about the difference between wanting something and being attached to it. It’s well worth a read so check it out here: Letting Go Of the Outcome

It obviously resonated with me, because I was thinking about it all night, although not perhaps in quite the way Tamsen had intended.

Let me see if I can explain briefly:

Tamsen describes the two different ways of wanting quite succinctly:

1.Our mind is focused on the thing we want.  We become aware of what it looks like when we have it.  We feel excited and motivated

2.Our mind is focused on the thing we want.  We become aware of our current lack of it. We feel miserable and anxious

I think a lot of the time, when people develop a serious illness, they move into that second kind of wanting. The focus becomes the LACK of health, and that actually makes it harder to heal (which I’ll go into more another time).  This is the place I fall into on my bad days. I am fairly good at picking myself up from it, but sometimes I do need a helping hand – or, knowing my stubbornness, more of a kick.

On the good days, the focus is the journey, on getting what I want done and on creating something I can be proud of. The desire to live is still there, but it creates motivation, not fear. And this really does make all the difference.

The problem though, is that I am perhaps too focused on the journey to actually have a specific destination in mind (other than ‘stay alive’! ) I have developed a pathological inability to actually plan my future. Which is why my path has been a somewhat windy one that doesn’t make sense to most people. On the one hand, this has led to me doing some amazing things and packing a lot more experiences into my 26years than most do in a lifetime. But on the other hand, it makes it hard to settle or to create anything permanent. If you don’t know what you want, how can you stand a chance of getting it?

It’s not even that I actually believe I’m going to die soon. I’ve got a good few years left in me at least I reckon.  But there is something about being told ‘you have six months to live’ that almost brings a shutter down in your mind and stops you wanting anything long term. I even get scared to let people get close to me, because I don’t want to be a burden or hurt them by dying, even though the logical part of me knows that that isn’t the case.

It is hardest in business I’m finding. I believe I’m good at what I do. Being ill makes me excellent at understanding other people’s health problems, and gives me more insight into what helps.  I also even have quite a good business brain – but evidently only for other peoples businesses! I do have aims and goals, but as someone pointed out to me, they are all very short term. There are projects I would like to do and there is most definitely one thing I would dearly love to achieve before I actually do die. But planning how to get there? Actually putting it down on paper and thinking more than a month ahead? It seems to be a little bit beyond me when the focus is purely on myself.

So, I need to spend a little time focusing both on the little goals along the journey and the final destination…because if I don’t at least have a vague idea of where I want to be, there is no chance of me ending up there at all.

Any suggestions of how to do this are more than welcome…!

What’s it all about?

I’ve received great feedback and support since I first posted about The Challenge. But there’s been quite a few questions too, the most common being ‘what exactly does heart/kidney failure mean?’ and ‘what are you going to do about it?’. So, I’ll try and answer those questions here.

There’s no point me spouting clinical definitions and diagnoses that mean nothing to no one. And being a homeopath I prefer to look at the whole picture anyway, so I’ll explain a little about how I experience things instead.

Firstly, the most important thing I have had to learn (am still learning in fact) is that I am not, in fact, Superwoman. And not only because I look awful in lycra and tend to wear my pants on the inside.

I have a habit of pushing myself too hard, which can quickly turn a good day into a bad week. I think anyone with a chronic illness will be able to understand that. We try to make the most of the good days, when really pacing yourself is the key. I have to admit to two things here though:
1. having previously survived a terminal diagnosis I’m a little blaise about my health now
2. I have a little bit of a fear that if I stop, I won’t be able to start again

The two biggest day to day issues are the tiredness and the pain. On a good day I’m tired, on a bad day it takes all my energy just to move at all. It’s hard to describe that kind of tiredness to someone who hasn’t experienced it. In some ways I’m fortunate though, my previous medical history means I’m well used to fatigue and am perhaps better at fighting through it than most.  But sometimes it is all a bit too much.

I also can’t breathe. It never feels like there is enough air. And on a bad day it is all I can do just to try and force my lungs to take in any oxygen at all. This can be a bit scary I admit. And it makes sleeping interesting, because if I lie down my heart pounds and I feel like I am suffocating. I didn’t realise until I recently moved how challenging stairs had become either.

As for the pain…well, it’s not something people expect. But think about it for a minute. My heart doesn’t work properly, so my muscles don’t get enough oxygen, which makes them hurt. Think of the aftereffects of running a marathon times ten! And then there’s the rats gnawing at my bones….

My circulation is awful, with my legs a rather fetching shade of purple and my feet either ice cold or scalding. Kind of makes mini skirts and high heels a thing of the past. My heart ‘vibrates’ if I do anything too quickly, such as stand up, and I spend most of the time feeling like I’m going to pass out. I worry sometimes that people think I am permanently drunk, as I do have balance issues and a tendency to shake a little.

And then there’s the thirst…you wouldn’t think that would be a problem. But being chronically thirsty is like a weird kind of torture. It doesn’t matter how much you drink it doesn’t go away, and the worst thing is, the more you drink the worse you feel, because your kidneys cant deal with the fluid…

I could go on, but that probably gives you enough of a picture. It’s not really as bad as it sounds. I still work, I still see clients, I still get out and do things and I like to think I keep a smile on my face most of the time. But I do need to pace myself and remember I’m not Superwoman…because gradually it is all getting worse and will continue to do so unless I have strong words with myself.

I also take herbs, homeopathics, flower essences and supplements to help keep me going…and that’s what I’ll talk about next time.

Staying alive is a challenge sometimes I admit. But luckily I’m good with challenges.

The Challenge…

Many of you who already know me, know that I have had a number of health challenges over the last few years. Over this lifetime in fact. If it wasn’t for discovering homeopathy at the age of 16, I would not still be alive.

But, here I am 10 years later, with two supposedly ‘terminal’ diagnoses behind me. The challenges don’t stop there however. Whilst I recovered from the other diseases, I am left with chronic heart and kidney failure. And here lies the new challenge…

In the last year I have been to hospital just twice. Not bad for a girl who is supposed to be dying right? I have both treated myself and been treated by my business partner and friend, Eleana Needham. All with only natural medicines – homeopathy, herbs, flower essences and nutrition.

I am still here, I still lead a full life, most people would never know there is anything wrong. But I am getting tired now, and have recently, due to stress, had a bit of a downturn in my health. Recent tests suggest that I am now at the stage where I need dialysis to survive.

Whilst I am not anti ‘normal’ medicine and believe that it has its place, I do not want to go down the dialysis route if I can avoid it. 3 days a week in hospital would make it impossible for me to earn a living, or have a life…

So, I am giving myself 2 months to do everything I can using nutrition, herbs and natural remedies to prevent me needing to go down that route.  It may seem foolish, but I do believe in the power of natural medicine to heal, so, I am putting my life where my mouth is and practicing what I preach.

That doesn’t mean I won’t go to the hospital if I need, I don’t have a death wish. I may need transfusions, I may need other help while I work on getting better.  There is a perception of medicine being wholly natural or all western, but my belief is that the two CAN sit side by side, and this is how I am doing it.

The point in publicising this? Well, maybe it will help someone else. Maybe it will show what natural remedies can do. And maybe I will need to have my ass kicked at times.  So, the challenge starts now. Follow my journey and see how it goes….