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.






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.