Forgive me readers, it has been 3 months since my last post.

I have been sick you see (surprise, surprise, bet you didn’t see that coming).  But I shan’t tire you with the details about that, because I have made a recent discovery…..and here it is…..

To anyone other than me, its actually boring, B O R I N G.   The details about injections, drugs, latest conversations with the cardiologist and treatment plans, let alone how my body has been reacting to the latest immuno suppressant….BORE  RING.  I watch as their eyes glaze over and the frozen expression of interest is carefully arranged on their face in order to try and disguise the inner conversation they are probably having……. “right…here she goes, probably shouldn’t have asked how she is….hmmmm….should have at least 10 minutes to figure out tea tonight… maybe a lasagne…oh god no, too much cheese, got to stay away from fats…healthy eating, …shit, what did she say again….I’ll nod and look sympathetic”.

And honestly, despite how that last sentence sounded, I really don’t blame people in the least.  Goodness knows I’ve done that exact same kind of thinking myself…..I can’t deny that for a moment.     I actually think it’s fair enough that they find my descriptions about how I’m really doing with my disease boring….because why wouldn’t they?  It’s not happening to them, it’s not their body.  My disease is my journey, it’s isolated and lonely, because it can’t be otherwise. It’s my body. No one else travels around in it.  Just me.  And anyway, who in their right mind would want to have an intimate conversational connection with my small blood vessels or gastrointestinal tract?  That’s just kinda gross, and also a little bit weird.

People are now beginning to avoid the question….that was my first clue that I may need to modify my responses.  And also to stop phoning people or adding into the conversation information about my latest doctor’s visit or flare up experience ….too much information, not relevant or “connectable” to, and how honestly are they supposed to respond?.  I’m actually starting to feel sorry for people!  Anyway, I’ve managed to formulate some responses that are more appropriate and also SHORT.  Short is good.  I’m still perfecting these sentences as I don’t want to outright lie about things in order to respect myself and what my life is really like.  But I have managed to gather two or three replies now.  So far I’ve got the following…..

“couple of recent challenges but no, pretty average thanks” (then quickly move onto, hows things with you?)


“Yep, chugging along! Hows about you?” (again moving onwards quickly) .

However I’ve managed to stumble onto a real winner! And people LOVE it… goes like this “A few struggles” (and here’s the clincher) “but trying to stay focused on the positive”   It’s fabulous, that bit.  It’s kind of like offering them one of those floating orange and white rings they throw to people who have accidently found themselves in deep water and struggling to get back out.  A life line….that’s it.  Throwing them a life line to help them get out of the quagmire they damn well didn’t mean to get themselves into, but managed to when they said “so..ahhhh…how are you?”.  And honestly, it’s just lovely to see the look of relief flash across their face, as they frantically snatch at that life saver with desperate clawed hands.  “Oh god yes…..oh well done….yes yes yes, its the way to go….you MUST stay positive, that’s what gets you though you know….”  Their relief is audible! And positive thinking is so trendy right now… “in”.

However, there is one exception to my new regime. Prednisone.   Sorry about the long description, just skip to the adverse reactions, in particular, weight gain.  The thing is, I’m forced to take rather a lot of prednisone.  In fact, I’d probably be bed ridden without it as I recently discovered when I tried to cut out a mere 2.5mg of the stuff and couldn’t use my hands or walk at all well the next morning.  However, there is a hidden silver lining.  If they do decide to make a movie of Enid Blyton’s “Faraway Tree” I’m pretty sure I could totally blitz getting the part of Moon Face just on appearance alone.  FYI here are a couple of pictures from the original book to illustrate my point…


This is one of a couple of characters from the Faraway Tree…..can you spot Moonface?

And here’s one that I feel reflects my personality a little more….although the first one could be quite accurate if it were to be symbolic of a photo of myself hanging out with a couple of my close friends….you know who you are….especially Saucepan man.

In any case, I simply can’t hide it.  Especially if I bump into people I haven’t seen for a year or two…often they actually don’t recognize me.  So in those instances, I feel compelled to try to explain my vast, and I DO mean V A S T change in appearance….

Unfortunately I haven’t got it down pat yet. And so I tend to go into a babbled over complicated explanation about scleroderma, tests, antibody type….it’s like a runaway train….I get faster and faster and increasingly more complicated until I’m fare screaming down that railway track with more and more gruesome information  about the disease.  It can range from getting my esophagus stretched to complicated explanations about microvascular angina….until before I know it I’m talking really loud and really fast and seem to have found myself explaining my latest bout of hemorrhoids due to lower gastroenterological  motility issues.  All in order to justify why I’ve become what feels like a walking beach ball with a big fat round moon face for a head.  Or, to be a lot kinder to myself…..all in order to justify why I’ve gained so much weight and don’t look like I thought I would at almost 50.

I guess I’ll have to work on that one…..and I’m thinking the place to begin might be to learn to accept my appearance doesn’t actually mean everyone will judge it as harshly as I do.

Not “positive thinking”…..just GOOD thoughts.  There is a big difference.

I might just stick this to my bathroom mirror…..





Starting the jigsaw again

A while ago my cat Otis lept up onto the coffee table….the one I had my almost half completed complicated jigsaw puzzle on.  I had spent a long time working on it to get it to that level, all on my own, and I was pretty proud of my progress.  Anyway, in the matter of about five seconds, the whole thing was scattered on my floor.  It was like everything went in slow motion in that 5 seconds.  Otis takes the leap, lands on the puzzle, puzzle skids and slides cleanly off the table and into fragmented pieces all over the carpet.  Oh yes….and then our small dog gleefully gobbles up two pieces in his mouth and scuttles off down the hall to savour his tasty treat.

And that was it.  OK, I still had the pieces (minus two which I did in fact manage to salvage at a later time, soggy but still recognisable).  Did I have the energy to start it all again…..not that day.  It just seemed too overwhelming.

Now let me run a parallel story.  Very different in circumstances, not at all dissimilar in theme.

Last weekend we travelled to Wellington to see Elton John perform live….he was absolutely fabulous and well worth travelling for.  We got a rental car so I didn’t have to walk.  Except in Wellington even the disabled parks are generally still a fair way away from cafes, bars and shops.  To make a long story short….I ended up with seriously graunching painful knees, and couldn’t walk at all. The pain caused simply by walking for 5 minutes to get dinner.  (Scleroderma can cause a build up of scar tissue on the  tendons creating tendon friction rubs – ouch) .  So the next day, in order that we could all try to enjoy our day I ended up having to use a mobility scooter, for the first time ever.

There were some very interesting things that I experienced whilst riding the scooter, such as the different attitudes of the other footpath users ranging from “Oh my goodness, I’ll certainly move out of your way to let you through” to “how dare you bring that thing on MY footpath, go around me, freak”. Also, I almost managed to score myself some ladies handbag when I lurched off from being stationary for a moment and didn’t realise it had looped itself over the prong on the back.

But I have to say, something happened to me in those seconds that I had to sit on that scooter for the first time and then steel myself to actually start it.  Strangers were looking, my family cautiously watching. In those seconds I felt something break inside me.   Time seemed to slow right down and I felt like I was watching myself in slow motion, clambering clumsily on and turning the key with ever so slightly shaking hands.  And then with a full on turmoil of emotions including shame, embarrassment, anger and the relief of not feeling the shattering pain I got a a clear view of the person I used to be disintegrating into pieces.  Or at least, that’s how it felt for me.  Probably didn’t look that way to others as I joked with the owner about whether I could possibly also rent a small dog for the front basket.

Perhaps it’s all part of the grieving process that someone with a chronic disease and resulting illness has to go through. The realisation that the able bodied healthy person they were is really and truly gone.  Sometimes a specific experience or event might trigger that….like it did for me in Wellington.  Maybe I was hanging onto an illusion that I really was still the same person, and if I pushed myself hard enough then I’d be able to do it….all be it slowly.  But my body made it clear that I’m different now. And in the few seconds I made myself get on the scooter and drive it away it felt like a repeat of the way I felt when Otis broke the puzzle.  All the pieces of who I used to be, everything about what I could physically do, and all the hard work I’ve put into working hard at achieving myself as a Mother, Wife and successful Therapist seemed to disconnect and scatter.  And I actually felt like I was driving away from me. Distressingly, when I returned the scooter later that day the old me wasn’t there waiting.  Still haven’t found her….think she actually took off some time ago but I was pretending she was still there.  Damn…hate it when that happens.  Realising your own self delusion is a shrinking experience.

It’s been a week since we got back.  All isn’t lost, I’ve realised the pieces are still there….but they just aren’t fitting together any more.  I’m unclear about who I am now.  Do I have the energy to start the puzzle again?  Not today…’s all a bit overwhelming.





Allocating the spoons.

I did it!  I finally managed to get myself down to the local aquatic centre and into the hydrotherapy pool to do some long overdue aqua-jogging.  I’m feeling so proud of myself!

It used to be (about 6 months ago) that I was managing to get down there THREE times every week.  Sometimes I could only manage 15 – 20 minutes in the pool, but at least it was something.  That, unfortunately, lasted about four weeks before my body goes “ahhhhh no, I don’t think so Kim”.  Basically I had become so fatigued I was struggling to get out of bed, and my rheumatologist said I had to stop and rest and only start again when I felt able to.  I was also under strict instructions to restrict myself to 1 – 2 visits each week for no longer than 30 minutes.

Today was my first day back to the pool.  I woke up this morning after a rough couple of days, felt ok, and decided to bite the bullet and get down there.

It got me thinking though, about how many spoons chronically ill people get allocated, as opposed to those who are well who have unlimited spoons.  (If you’re a little lost here please read “spoon theory“).

While I was in the pool, I couldn’t help but notice a mother, with several of her relatives and a baby in one of those floaty things, basically taking up the middle of the hydrotherapy pool.  Now, please don’t think I’m a bitter and twisted mean person.  I do love babies, and this one was really cute….and babies and mums are allowed in the pool…..however…..not smack bang in the middle where aqua joggers have to go around them (it’s a little inconsiderate).  It got me thinking as I flailed my way around her every time I did a length, about how many extra spoons I was using to do that.  As a result I had to stop early because I felt a lot more tired.  It’s not something fit and well people understand…1.  That they have unlimited spoons and 2. Others do not.

When I got home and had to have my shower, I almost dropped my socks. I managed to catch them though, and as I did so I automatically found myself thinking…”phew, thank goodness I got those, it would have taken so much more energy to have to pick them up off the floor” and “thank goodness I brushed and flossed before going to the pool, I wont have to do that as well as have a shower and get dressed”.  And as for removing wet and clinging togs….that will be three spoons thank you very much.  Once showered and dressed and out to the lounge, my thought was “how much energy will it take to make a juice?”.  In the end I made a cup of tea, but in truth I really wanted a juice, however simply didn’t have the spoons to peel the fruit and blend them up. Cup of tea = 1 spoon, juice = 3.

It’s occuring to me today how often I am measuring my spoons daily…asking myself whether I have enough to do something, or will it have to either wait until later or another day, or do I just just flag it all together. Those thoughts are quickly followed by “OK, so if I do this, then will I need to nap before doing it? Or after?

Additionally I’m finding that I’m choosing not to do many things despite desperately wanting to.  There was a pottery exhibition on at the museum last week, but alas, I just didn’t have the energy to go.  And I’d love to get along to more of Max’s gigs, obviously I love to see and hear him play.  However my spoons allocation will rarely let me.

I feel sad when I think about how spoon allocation has become so automatic for me now….I’m constantly calculating my every move, and all decisions I make that don’t involve the recliner.  It used to be that my mind was taken up with creative, deep and meaningful thoughts.  These days I have to treasure the times I can indulge in my old ways of thinking, it generally happens on the recliner….for about 5 minutes before I fall asleep!  Still….at least my math skills are improving, 5 spoons minus 3 equals……..zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

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: