Rugby and other success stories

Today our All Blacks team won the rugby world cup.  I am a little surprised to note how proud I feel about that, but there we are.  Whilst I didn’t get up at 5am to watch the game, I was very happy to hear the result upon waking.  Lets face it, most days it’s a struggle to actually have a shower without several rests during the process, so a 5am wake up and enthusiastic waving of hands, jumping up and down and the stress my heart would have been under watching was never going to happen!  But proud to be a kiwi right now?….why yes, yes I am.

I’ve never really been a big fan of rugby, I know, terribly unpatriotic of me since it is our national game.  I can’t seem to get past the drinking culture than can go with it, and the way it seems acceptable for our men to be all huggy and affectionate with each other on the field, but heaven forbid if they were to be a little “softer” with each other in real life.  Gotta keep up that staunch kiwi male persona right? (Yes, I’m probably being very general here and possibly, (that’s POSSIBLY) a little unfair about kiwi males…but I’m pretty sure there is some truth in my thoughts too).

Actually, sports in general.  I’m really not good with the whole sport thing. Prior to getting sick, I was a bit active, and managed to keep reasonably fit.  I even trained and competed in a body shaping contest about 18 years ago (got third actually – probably the biggest sporting achievement I’ll ever do in my lifetime so I feel a little “blowing of my own trumpet” is ok).  But not so these days….the most difficult thing I do physically now is using my calf muscles to push the footrest of my recliner into place as I get out of it.  Sigh.

I miss not being active actually, and from my recliner I can look out the window onto the street and I see a number of slim women about my age, jogging past in their lycra with pony tails swinging.  (Can anyone detect a tinge of green in my voice?). When I was thirty, I thought I was going to be one of those middle aged fit, beautiful ladies.  I imagined myself riding my bike through the plantation with my kids, going for hikes while seeing the sites of our beautiful country as a family and camping trips in a tent during the summer holidays. I was going to age well, and be an active, stylish, successful and busy middle aged woman.

I’ve changed my focus now through necessity, and I’ve become a plump Mum, who, on good days bakes yummy cakes and fudge for my boys,  drives the country when I’m well enough to visit my two oldest  (and I really love these road trips), oh, and of course I run the household from a recliner in the corner of the lounge. (Not to mention a cat lady, who collects strays).  If my fingers are working I can crochet blankets for my family some days, and look….I’m also a blogist! And there’s more….it’s all a case of looking at the things I can do and not what I can’t, although to be honest, most days are a mix of both.

I love to see people around me being successful in the things they strive for though. In the past there used to be an element of competition about that.  I felt I needed to keep up and be able to achieve amazing things too, but I’ve long given up on that!

Now,I love to appreciate my lovely husband Max who is an awesomely talented pianist and continues to achieve great things with his music.  Each of my boys are doing really well in terms of using the gifts they have been blessed with to grow themselves and their lives.  I have two friends who are both using their creative talent to make and offer beautiful art to the world.  And now just look at our national rugby team….world champions. It truly does my soul good to celebrate the success of those around me.  And it helps me to remember that although my achievements seem small and insignificant in comparison these days, most mornings getting my shower done, my hair and face presentable and managing to get dressed, for me, is as good as getting out there and playing a full on game of rugby.  And if the  spoon theory is part of your life, I’m sure as another “spoonie” you will identify!


Dignity….whats that about anyway?

So last night I got to thinking about coping with unwanted changes in ones life…..well, ok, unwanted changes in MY life!  And I got to thinking about how “well” I think I’m coping with those changes.  Turns out I decided I was not coping in a “dignified” manner.

Have you ever been in a situation where something that is happening to you is really really affecting you, and you’re totally struggling with it.  But you know it would be undignified to talk out loud about that struggle, because you would appear weak, or seeking attention, or just making a fuss of something others may consider insignificant.  So you hold on to it…and keep on feeding your sad and negative thoughts back into yourself…and then some more…and a sneaky wee part of you that gleefully wants it all out keeps encouraging you to keep re feeding it back inside because secretly you really know what’s going to happen…until all of a sudden it explodes out into a huge mess….all a bit like that explosion scene involving Mr Creosote in “The meaning of life”.  (Don’t watch that clip if you are at all squeamish….it’s pretty gross in a satire-ish kind of way!)  And anyway, next thing….hello…..all manner of that dignity and strength you strove to emulate, well, that just went down the gurgler didn’t it?

Conducting oneself in a dignified manner.  It’s something that is seen as a positive attribute, and is rewarded with respect from others.  How often do you hear about people who have been really sick, sometimes dying, and people say “you know, she never complains at all, through all those treatments….she just puts up with so much and is so strong”.  I hear that quite a bit.  Do you?  There seems to be a special honour that goes with those comments, a reverence of that person, perhaps even an implication that we should all be like this, a state to strive for.  Well, that’s what I  hear anyway.  “Such a STRONG woman, so STRONG ” – the emphasis goes on that word, STRONG.  It’s the way to be….people like that, they’re comfortable with it.

So I notice I try to emulate this since being strong and dignified in the face of adversity is clearly the way to be.  But you know….I just end up cocking it up.  Because I value being genuine and not a false person…in fact being genuine and real are qualities that I hold very close to my heart. And being real “out loud” about grieving for a life that isn’t actually going to be what you worked hard towards and expected doesn’t feel very dignified.  Now, don’t get me wrong, I’m not looking for sympathy….”oh you poor thing, that must be awful”.  I think that’s where I lose my dignity actually.  I’m not looking for the “block out” technique…”Don’t be silly”.  That’s the one people say when they feel powerless to help and just want your grief to go away, thus negating it all together, leading to a further loss of dignity.  Actually, what I think is useful for retaining dignity is facing the grief head on and being able to express it without feeling like it must be stifled or packaged into an acceptable presentation.  It’s my issue, I would like to feel more comfortable about doing this, and perhaps that’s the secret to being dignified about it all?

I notice that when people ask about scleroderma I often be sure to add that they treat it with a type of chemotherapy.  That word….chemo….I notice how I like to throw that word into the conversation we are having about scleroderma to make an impact, because everyone knows CHEMO treatment is SERIOUS.  It’s quite a sly and sneaky thing to do, not at all genuine and upfront really.  I think what I’m really trying to say is “I’m sick.  take it seriously, it’s serious, it’s changed my life! Scleroderma is real and hard to live with every day”.  It’s a fish hook designed to get people to have a reaction I’m looking for, so I get to have my say about how scleroderma has affected my life, whilst remaining dignified and strong, someone to be admired for calmly mentioning it during conversation.

It’s time to find a new approach.

I think I’d like to find a balance between staying real and genuine, and retaining a sense of dignity whilst not pulling any punches about how much I struggle.  I don’t want to suffer in silence thus becoming an island and ending up in a dark lonely place, and getting into a cycle of feeding myself the grief until it explodes out.

I’m sure there is a balance.

No more Mr Creosote… more.  I’m sick of mopping up the mess afterwards!

Post number ONE! A blog is born….

Hello….and welcome to my blog page.

This is my very first post, so it makes sense to introduce myself and sort of “set the scene” for what will hopefully be a useful, helpful and interesting page for those who read it…..and for me too.

My intention for this blog was two fold, firstly to give information to anyone interested about Systemic Scleroderma, a reasonably rare autoimmune disease, one I’ve been diagnosed with for 2 years now.  Raising awareness about scleroderma will hopefully lead to increased funding so more research can go ahead hopefully leading to a cure one day.  To those reading this who have scleroderma, I’m hoping to share my experience of the disease from the framework of my life here in New Zealand, as a Mum, wife, and (now retired) counsellor/therapist.  I know I like to read how others around the world experience scleroderma, and so I’m hoping to add my small input as well.  Secondly, I have found my life has changed dramatically since diagnosis, and to be honest, have been struggling to cope at times.  You see, I’ve always been a bit of a “shaker and mover”, working hard to achieve goals I set myself, starting new projects and learning new skills, from my professional life as a therapist, to exercising and keeping well, being a full on Mum to three boys right down to managing my housework and running my home.  Since becoming sick I’ve lost a great deal physically, mentally and emotionally,  with fatigue and pain slowing me right down, so that these days I conduct my life from a recliner chair in the corner of our lounge.  The idea of writing a blog seemed appealing and helpful in terms of being able to contribute at least something, and so here we are… from my recliner!

My plan is to write as I can, about anything that happens to be happening, hopefully providing some entertainment, information, a few “deep musings” about the meaning of life, and with any luck, a few laughs!  So watch this space, and I hope I can offer something to someone through my posts.

Oh yeah…for those interested here’s a link to some info about Scleroderma: