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…..

 

 

 

Advertisements

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.

 

 

 

 

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.