Au Revoir

February 12, 2013 § 10 Comments

Sus - Before I was Ill

I havent written anything in this blog for ages. It hasn’t been because I haven’t thought about writing posts, I have. It just seems to evade me to actually write them down.

I was wondering about this and asking myself, why haven’t I been able to tell you about some of my latest health issues. Like the fact that I had some bloods done lately that found an auto antibody called PMscl which basically means  I now seem to have an overlap disease, schelraderma. And this (and I need to confirm this once I have my next consultancy appointment) means I have a rare form of dermatomyositis called schleradermatomyositis (say that while eating an apple!). It’s so rare there isn’t even an article about it in Wikipedia.

So why haven’t I written more blog posts of late?

I think it is because I am starting to feel better (with, or without, the schleraderma).

I am back at work full time (although often that really takes it out of me and I get exhausted).

I feel a lot stronger in myself.

I am managing to do  4 minutes on the cross trainer, twice, most days.

I can walk much further.

I am even going to my first business meeting next week: It’s been at least 10 months since I was able to, not only travel to a meeting, but actually have the strength and stamina to sit though one. It’s in london at Imperial College and its also signficant as it’s the end of a 2 year project I’ve been involved in that I’ve somehow managed, through the illness, to stay afloat with.

Myself and Suz started this blog to help us cope with a shocking and difficult reality, of being very sick. This blog and the people who read it and had conversations with me about the trials and tribulations I wrote about, has helped me to get through what has been, probably, the most difficult year of my life, both emotionally and physically.

I know I’m not completely better and it’s an incurable disease anyway, so will rear its very ugly head from time to time, but for now, I am moving forward. Dermatomyostis may be clinging onto my shirt tails and causing some drag, but I’ll wear some skates and pull it along with me, I will no longer let it control me, I want to live.

So my blogosphere friends, I say, for now, au revoir and thank you for being there with me: I wish you all, health, love, happiness and peace.

Sus xxx


New Beginnings

February 12, 2013 § 2 Comments

549495_10151013240261024_1824506590_n2013 is the year for new beginnings.  It is the year for fresh challenges, new energies and a future that is about looking forward to better things.  Notwithstanding how tough 2012 was, I guess I feel like I have learnt a lot – about myself as much as anything else.  And in that respect I feel grateful and indeed proud to know that even as I get older there is more to learn.  After all, life is a journey and it would be terribly boring if the landscape was dull and the road predictable. When things are  easy the temptation is always to be  complacent and expectant – that things will just be OK.  And in the end OK is enough –  by default it is the standard.    In my view OK is simply not good enough  – and for that I am grateful that my life has been nothing short of extraordinary – tough lots of times but worth it all the same.

So in  writing this note I want to reflect on what I have learnt in what is easily the toughest year of my life.

The trials and tribulations of 2012 have taught me:

  • Never doubt your own strength. You will be as strong as you need to be  – strength draws its reserves from unknown places.
  • We will get through even the darkest moments and at some time, when we are ready, we are amazed and proud of our resilience.
  • Resilience is what we admire in other people even though we take it for granted in ourself.  It is by far one of the most under-rated capabilities we have. We need to recognise it as a gift and draw on it when nothing else is left.
  • Family and friends are forever. They are everything.
  • People who are false, eventually just disappear out of your life – they can’t match your honestly.
  • Our mind is a  wonderful and powerful thing.  I choose to see the glass half full. I choose to be well and positive. I choose to make my own future.  I choose my destiny and am not defined by my failures.
  • I can let go –  lose nothing and gain strength.
  • Some people will always be victims and I am not one of them.
  • When your hair falls out so does some of your confidence.  When it grows back, it takes much longer for the confidence to reemerge.
  • Some doctors you trust with your life  – others you leave for others to trust.
  • The world goes on even when I don’t work at a million miles and hour.
  • Everything I experience is in the perspective of my life’s journey.  It is a mosaic of my complexities, of light and shade, of colors and riches, of cracks and chips – but it is what it is and it is worth the effort of holding it together.

There you have somethings that I got out of last year.  On the practical side – nausea passes, hair grows back, your appetite returns, your mouth eventually stops hurting,the flavour of food returns, life goes on – and on.

So now the final update

  • Katherine got through year 12 with an excellent score and is off to Sydney University in a couple of weeks to study Diagnostic Radiography. I will be on my own at home and that is a challenge I am surprisingly happy to face at the moment.
  • My cancer has gone into remission  – for how long is any one’s guess but the hope is it is for a few years – maybe forever, but Im not really thinking about that
  • I am working again.  I have set up another business but am also contemplating full time employment – maybe even a sea change.  I am open to all possibilities this year
  • I have written down a secret list of what I want to get out of this year – I would share it with you all but then it wouldn’t be a secret and I have learned that sometimes you just have to wait and see.

So life is busy and full again – but not too full for me to reflect on how important it is to make time for yourself and to never take things for granted.

Writing this blog with Sus has been a lifeline – it was just the writing that mattered. Not that anyone was listening.  It is amazing just how therapeutic it is just to hear yourself articulate your thoughts – in words and in print.  never under estimate the power of conversation.  And that is where it all started – the desire to start a conversation.  And for now there is not much else to say  – except thank you, from the bottom of my heart, to everyone that joined in.

All my love and I wish you all a happy and fulfilling life.  I know that mine is.

Suz xxxxxxxx

Where Am I?

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