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?)

and

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

However I’ve managed to stumble onto a real winner! And people LOVE it…..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…..so “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…..it’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

Celebrating my caregivers, the fabulous four men in my life.

I’m just recovering in my recliner.

This is the price I must pay for the weekend I have just had, and in fact, the price my lovely husband also has to pay. It is he who has just given up his Sunday mowed the lawns, weeded the gardens, vacuumed the whole house, cooked dinner and cleared away the dishes.  In a minute, he is going to bring me his home made rice pudding with ice cream.

I didn’t do anything to help.

I couldn’t.

My joints are throbbing, and I feel extremely fatigued.  My fingers are struggling to type this, so thank goodness for auto correct!  I’m recovering from the road trip down to Dunedin to bring our middle son home from University for the Summer.  And also from delivering our eldest son back to the airport to fly back to Wellington after he made a fleeting visit to Christchurch for a mates 21st this weekend.

My youngest came with me to Dunedin for the trip.  We stayed the night  before returning with the middle one the following day.  The little one carried my bag for me in and out of the hotel, and made me cups of tea while we were there.  He’s only 12.  My middle one insisted I stay in the car while he and the smallest made their way up and down three flights of stairs at the halls of residence carrying down bags and boxes.  My oldest cooked me dinner when we finally got home, and cleaned my kitchen.  During this time my husband, Max, was out playing gigs to earn extra money because  I can’t work any more because of stupid scleroderma.

So lets hear it for the boys, without them, I’d be really struggling, and that’s probably an understatement.

I’m loving the blessings the weekend brought though.

The drive down was awesome, golden yellow fields of canola, rolling green pastures, little brooks with funny names (dog kennel stream) and the quaint little shops lining the little townships of central Otago as we got closer and closer to Dunedin.  I really loved watching the smallest one take in the hotel (“wow Mum, we’re on the 7th floor”) and his wide eyes as room service delivered our evening meal (“so posh….our own personal waiter”).

Once home, It was awesome to be able to sit with all three of my sons in the same room for the first time since Christmas last year.  My eldest had arrived from Wellington, and as they were discussing life’s challenges together I sat back and admired the young men they have become (the two oldest) and are becoming (the small one).  I know they all benefit from the awesome example they have have in Max.

So yes, pain, fatigue and a fair bit of difficulty fighting feelings of inadequacy and the shame.  The typical feelings associated with being chronically ill and not being able to contribute towards the never ending domestic work needed to keep the household running.  But I won’t let it overrun me.  I have so very much to be thankful for, so many good things happened this weekend.  And I am so blessed to have these four beautiful males in my life….my smallest, middle and eldest, and my beautiful Max.

Awkward…..so awkward.

I’ve been awake with pain since 4am this morning.  It’s not a rare occurrence, but lying in the bed with throbbing joints just keeps Max awake and also starts my mind going off down really bizarre bunny trails …. as per Leunig (cartoon above….thanks Leunig, sums it up nicely) although this time, I didn’t lapse back into unconsciousness unfortunately.  So at about 4.30am I slowly made my way to the trusty recliner and waited for the codeine to kick in.

Once I’ve taken Jack to school shortly (it’s now 7.30am) no doubt I’ll go back to bed for quite a lot of the day.  Tuesday is post methotrexate (the chemo drugs) day, so it’s usually a quiet one anyway….most of my friends know I’m usually a zombie on Tuesday’s….it’s the day I feel the most isolated, but I like it that way. Especially since I tend to wear my sunflower leggings and  tie dyed t shirt that doesn’t cover my “tail end”….please see this video before you read on….you’re welcome 🙂

I also love leggings, mostly for the comfort but there’s also that fantastic feeling of being able to don something you know isn’t quite socially acceptable…..well my sunflower ones aren’t anyway… (I may post a photo at some stage – be prepared). I love to wear them….it’s the rebel in me coming out.  However….in the end, that rebel part of me always comes back to bite me in the bum.  Always.  You see, sometimes, just sometimes I have been known to wear my sunflower leggings down to the supermarket.  You know those times when you run out of something and think, bugger it, I’m just going to race in and out.  Unfortunately usually  I don’t race in and out.  No….I think…”oooo, I’ll just get one of those, and some of that, and oh…we also need that”.     And it’s always the time you run into THAT friend isn’t it?  You know the one….with the flawless makeup, perfect couture hung on the perfect body and the two angelic children, also dressed impeccably and behaving the same way.  She’s  clicking along there in her fashionable three inch heels (how do women wear those things anyway….especially mothers with children). Generally she’ll round the corner just as I’m very subtly trying to adjust my ridden up knickers back into place (come on ladies….we’ve all experienced that)  whilst browsing the hemorrhoids herbal ointment section of the medicines aisle. Those women love to accost me from behind with a cherry “hellloooooo Kim…..haven’t seen you for age-jusssssss”.  They usually give me a hug and nine times out of ten I’ll have consumed a bag of onion chips just prior to having left the house.  So not only am I conscious not to speak for fear of breathing onion fumes in her face as she hugs me,  but somewhere in the back of my mind I’m wondering if she detects I haven’t had a shower that morning because I was way too exhausted.  It always ends badly….I’m trying to answer with one word replies because I’m afraid of asphyxiating her with the rancid stench of onions, whilst backing away with my trolley as quickly as possible, generally bumping into someone.  And she’s usually standing there with her head cocked on one side looking a bit puzzled going “ok, byeeee then kimmy, we’ll have to do coffee sooooon” (probably thinking WTF?)  Then, just as I think I’ve escaped….every single aisle after that I have to walk past her, smiling awkwardly and trying not to make eye contact, hurriedly making my way along the said aisle with my sunflower leggings swishing away as my jumbo thighs rub together. Damn!  Should have at least worn that long shirt after all….while my “rebel” side is shrinking into obscurity really fast……awkward…so awkward.

I know I’ll probably always be awkward, there have been so many examples over the years….the time I accidently dropped a dog biscuit from my pocket on the floor of the very posh dermatologist’s office when leaving, or the time I found my knickers from the prior day making their way down my trouser leg and out onto the driveway of someone’s house just as I’m about to knock on their door.  (Turns out I’d not untangled them from my pants the night before and they had got stuck in there, surprising me with their appearance as explained….I must have been exhausted that night, as well as the next morning when I got dressed).  But that’s me….I’m never going to be one of the “Mrs Perfect’s” of this world.

So now I’m heading back off to bed again ….I’ll be sure to get my sunflower leggings ready to slip into once I’m done with my sleeping.  And luckily for the general public, I did my shopping yesterday.  So here’s hoping for a relatively isolated and embarrassment free day today.

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…..no 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…..direct 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:

http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Scleroderma