Chronic stuff - a few ramblings

"You must be in a lot of pain....?"

Each person asking me this question usually includes the 'head-tilt of compassion' - you know what I mean.  
Head just slightly tilted to one side, look of concern on their face.

To be honest, I just want to help them get their head straight again, as it doesn't look comfortable, and I'm concerned they will get neck ache if they keep the pose for too long...

"Must I...?" I usually reply.

(That confuses most people!)


Cerebral Palsy pain

*Analogy alert*

Think of an orchestra.  

Only the double bases, the trombones, and the bassoons can be heard.  They are playing the lowest chord their pitch will allow.  

And someone's not quite in tune.

That's how my muscles and joints feel most of the time.  

It's low level. It's background.  It's slightly annoying. 

The volume can be turned down a little with painkillers, sometimes.  

Arthritis pain

Same orchestra.  

This time, 2 oboe players have fallen out with each other, and the whole orchestra.  

Every now and again they suddenly, and without warning, play a single clashing note, very loudly.  

It cuts through everything else like a knife.

That's my left hip.  And it laughs in the face of painkillers.

It only happens sometimes...


So, yes.  I guess I am.

I'm back!!!!

Forgive me - it has been 15 months since my last confession...

Such a lot has happened in that time, and even in 2017 itself.  

Let me take you on a journey to fill you in on events since we last met, and pick up a few key words along the way:

Turmoil...

Mr Tup had both of his kidneys removed in January 2017 - genetic polycystic kidneys, which were doomed anyway, became infected... They went at the end of January - and along came dialysis.  3 times each week, for 4 hours each session.  Work life went from full time to part time, clothes now hung off him (he'd lost the equivalent of 2 bowling balls when the kidneys came out), and a restricted diet made eating out too big a challenge.  But, he was alive.  

Grace...

On 5th December 2017 we got 'The Phonecall' - a kidney had become available, and Mr Tup was the best match for it.  They met at the hospital - both had travelled well.  The kidney is still going strong, 15 months later - and is a living reminder of Grace.  Somewhere, a family stood by a bedside in a hospital, took a deep breath, and said 'Yes'.  

Wrestling...

No, not the WWF kind.

A deep dissatisfaction with Vicar-ing, and the direction it was going in... Throughout the first 9 months of 2018, I wrestled with my conflicting priorities - one which brought me joy, and one which didn't:

Vicar of 2 parishes.  

Doing more and more talks on disability, access and inclusion (and turning down a few along the way)

And of course, the one which brought me joy didn't bring me a salary!  And I couldn't see how there would ever exist the role which would bring me joy and pay me...

So, stay where I was in what I was doing and at least be stable (house and income)?

Or, stop.  

Trust...

I stopped.  I resigned. Letter sent 7th October 2018.  And went public 14th October 2018.  3 months notice, and at the end of it there would be no house to live in and no income from me.  It was a relief!  Mr T and I had a tangible sense of God being in this, and God knowing what would happen next even though we had no idea.

Surprise!

5 days after going public with my resignation, and 5 days of saying to people, "honestly, I don't have another job to go to, I really am just stopping", an advert appeared in the Church Press....

And that's a whole other story, in a whole new blog post!!