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

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… 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.