Canvas

Back from 8 nights’ camping in North Devon with the children and Lovely Man and his son. Two tents, five pillows, three bodyboards, umpteen tent pegs. All crammed inside the car, speeding down the M5, eeking out Haribo. How to start a holiday…

Here’s my take on it….

Capacity

Your knee is in my back.

To move could you just Shift that rucksack

to your right

And then squash down that camping light

A little further…

There…spot on!

All impediments to my view have gone.

We have our bags,

We know the way

And

I think we could safely say

That every tiny space is filled

With bags or boys

and we are skilled

Enough in packing to achieve

Space for us all…

If we don’t breathe.

Gaga

so, I’m back. It’s been a while…I seem to say tha a lot don’t I? I have moved house now so I am slowly getting settled into the new place. Lots of painting and DIY opportunities. I will take you round the projects at some point soon. Honest. But today I wanted to share a radio show….not like me, you say. She’s never shown an  interest … however, I am on this show so I obviously am a little bit fascinated ;0

the background is that Ian, the interviewer, is a friend made via t’internet a while ago. I joined a Parkinsons UK self-management group and Ian was one of the members. We are are still in touch with each other and the other group members. Ian is a DJ at Radio Parkie. This is a digital channel dedicated to decent music and Parkinson’s. An unusual combo I grant you.

anyway, here’s me spilling about PD, Italy, music, work and the importance of sniffing bread. Enjoy.

Click for radio show

Knowledge 2

So it’s taken me a while (but what’s new) but here is my second instalment of my diagnosis story. First instalment can be found here.

So there I was, holding down a high powered job, crossing the globe advising multinationals at board level about their tax governance etc etc,  looking after two small boys, trying to  keep domestic arrangements (for which read tidiness, cleaning etc I wasn’t allowed access to household finances but thats another post at some point) on an even keel, be sociable with friends and family and have a decent  relationship with my husband. And deal with the head f~#k that is early onset parkinsons. And my father died.

Eventually I was given an appointment with a clinical psychologist as part of the ‘you have parkinsons’ package. She asked me what I did. As I listed all my activities she m said quietly, that’s a very full plate and you haven’t even said you are a mother.   And she was right. I was so bombed I hadn’t even considered it. Even tho my boys are my world. And then she said something that with hindsight was the beginning of the end of that life. She said, if somebody added a big pile of something new to your plate isn’t it logical that something else will have to move to accommodate it? Why do you think everything else is the same? Isn’t that the illogical part?

 

And I argued and railed against that simple question. I couldn’t see past my current persona. I could not see what had to change. Then I went and talked to OH and tentatively broached the subject of cutting my hours. At that point I was doing four days a week but four very long days, in a national role. And the fifth day I had my youngest to look after. So no rest. No down time.

 

And that that was the tipping point for me. OH works hard. Very hard. And can only do that because he got all childcare support from me. He is also a great provider. And couldn’t see past that role. I got left behind in the reflex reaction of worry and panic the suggestion of less salary induced. Looking back, we didn’t handle it well. I felt abandoned and misunderstood. This was about preserving life and quality of life, about living to the max with our boys, about loving each other and being with each the. I really did love him. But he couldn’t get past the fear of the illness, it’s label, it’s implications. He buried himself in work, took on more and more chores, resented it, stressed, got angry blah blah blah. And I felt alone, unloved, scared even. Money and stuff seemed to be more valued than experiences and emotions. We were poster children for how not to handle a serious diagnosis.

So there we were. Struggling with the diagnosis without ever saying so. It was a lesson in mis  communication.

That’s  it for this instalmet. I will do another one soon. But be warned, it’s a while before we get to a cheerful outcome.

Knowledge 1

Discovery is an interesting concept.

A tiny piece of knowledge, of information and your life can change beyond recognition.

I woke up this morning and I looked on YouTube and read a video blog of somebody’s diagnosis of Parkinsons.

Incredibly ,they got the diagnosis from standing start to full knowledge in less than 24 hours which is almost unheard-of in these NHS delay ridden times. And the thing that made me stop and think was not the diagnosis itself – it wasn’t even the speed – it was the fact that the guy telling the story was sitting next to his partner and that she had been there for him throughout the process. And five years later whatever she was still there, finishing his sentences for him! Obviously, this struck a chord with me in these straightened times. And it took me back to my diagnosis 10 years ago.

Parkinson’s UK and similar organisations are always saying that sharing the story of your diagnosis is helpful to others, so here’s mine. I think it’s pretty typical but nevertheless it’s interesting to me! There’s quite a lot so I’m splitting it over a few posts…save your tired eyes!

So, I was a healthy 35-year-old trying for a baby and full of career ambition and angst just like most people. Until I noticed one day that I was brushing my teeth with my left hand not my right and I thought “that’s weird” but didn’t do anything about i. Then I noticed that I couldn’t eat using my chopsticks as well as I had been able to. Now anything that gets between me and Chinese food is something serious – needs to be dealt with immediately. So I made an appointment at the doctor feeling very proud of myself, thinking things would be dealt with quickly. I went to go see him And he did all the normal tests and checked my capabilities on both hands and said “I’m not sure what it is, come back in six months if it’s still the same”.

Anyway within those six months I got pregnant and was understandably distracted, so never went back to the doctor and my hands got a little bit worse, but to be honest, the fun and games of pregnancy at the age of 36 by now were more engaging and so I didn’t do anything about it. My eldest son was born in March 2006 and I noticed that my hands were beginning to really hurt. I went to the doctor and I was diagnosed with de quervane’s syndrome and possible carpal tunnel. They did all the tests for carpel tunnel and couldn’t rule it out but couldn’t specifically diagnose it either. So they decided to do the operation on my right hand because it seemed a sensible thing to do. This was after having lots of incredibly painful steroid injections into my wrists and I said “well it’s going to be very inconvenient not be able to drive two weeks, before I have this operation is there anybody else i could see just to make sure that we’re happy that’s what it is “.

And that’s how I got to a senior respected neurologist who took one look at me and said “well I need to do the testing to discount any others conditions but I think you’ve got Parkinsons”.

I was by myself. I had had no warning. No inclination at all. Completely out of the blue. I don’t remember leaving the hospital but I remember walking home from the hospital in a daze. I phoned my husband on the way – I don’t remember what I said – I think I just decided to ignore it and get on with life as best I could. I mean I had a little boy, a tough job and hopes and dreams – it just seemed unbelievable. Therefore it wouldn’t have a place in my life.

And I carried on. I stayed in my job, travelling nationally and oversees, I had another son (and a miscarriage), I taught myself to write using my left hand, I learnt how to rest when no one could see so I appeared ok. I hid PD from everyone really even though I told people. I didn’t hide the words but I fought against their meaning and implications. I think many people do if they are honest. And it worked. For a few years. And then suddenly, it didn’t….

I will post the next instalment soon. What did you do when you were dx?

Together

It is fair to say that a binary style is a more Familia system to me. I have not lived alone in years… I mean decades. And the biggest challenge I find is coordination. Not only my physical actions (let’s face it, with Parkinson that was always going to be an issue!). No, I mean coordination of practical and creative aspects of my life. I find I have to coordinate not only internally but also obviously, with my family, my workmates and my friends. When I say workmates I really should say friends too as I have been lucky enough to meet and create with some wonderful people recently. You guys know I set up the studio space here in Gloucestershire last year… It carries on and is doing well and I have been so lucky with the people I have met through it. So what is the point of this post? Why am I rambling on? Well, I recently had an operation on my hand and whilst I’m sitting here waiting for it to stitch together I have been thinking about what other things need to come together to make my life happy, easier to manage and more aligned with everybody else in my life. And here’s what I’ve come up with:

Write it down – I have so many ideas going through my head right now I finally accept that the only way I’m going to remember or recall any of it at a later date is to write it down. Obviously, writing can be troublesome at times to me so when I say write it down I mean dictate it down really. And to that end my second point is

Siri is your friend – I have hated using Siri because I felt such a twit saying hey Siri but, I have to admit, especially in these times of not having a working right hand the electronic personal assistant is my friend that does help me do all sorts of things easily including this post. Sorry Siri.

Being organised is not a bad thing – now this one sounds counterintuitive – – – I mean I’m always saying I want to get organised. what I hate doing is being told what to do and what I realise now is, in order to be organised I have to have a place for everything and everything In its place and that means telling myself where to put things consistently every day. And I have to live with that and I have to accept it and if I do my life is so much easier. I rest my case. In its place.

Take small bites – by which I mean do not try and eat the whole thing as you will be sick. I will try to blitz a room in one go – empty and tidy and clean it and redecorate and rearrange, whatever. This is a recipe for disaster. It would be for most people to me even more so because I run out of energy then I get really upset. I have to stop doing this it’s crazy. So slow and steady unfortunately.

Accept help : I struggle with this one. I hate asking for help because I think it makes me look week. And in particular having Parkinson’s puts me at a disadvantage immediately – I am weak! The answer? When help is genuinely and generously offered I need to acknowledge and take it when required. My friends have been awesome and in fact they have been for years. I need to appreciate it – I’m a very lucky girl.

Don’t sweat the small stuff – you have heard this one so many times I’m sure… Prioritise prioritise prioritise.

look after myself : easily said hard to do. I find it incredibly difficult to do this without feeling guilty but I have learnt the hard way but if I do not look after myself I will crash and burn again on that damages my family. So it’s a no-brainer really.

I’m sure there’s loads more just can’t think of any more the moment. I’m also conscious that I have to get up and try and have my first bath or shower since the operation. I have my Ziploc bag ready to take to make myself an impromptu water mitt!?

Now

I have a confession to make, I have another love in my life. I have been working on another venture and this weekend it took flight. I am now the founder of an arts space here in Stitchopolis. Can you believe it??  Check it out here

Hope you like!

Folding

Today I folded paper and

My son dictated the design. 

He chose my folds, the way I turned

The paper, here then there. 

I find the folding soothes the soul

I love to concentrate

To focus is to forget – i find

It helps me lose the thread. 

I like to let my mind unwind

And fold until it’s done. 

Yet, if I hadn’t joined this club

I wouldn’t even know. 

Just think, without this illness

I would not have had time to fold

I wouldn’t take my Boys to school

I’d be late home 

An absent mum

And so to conclude I say

My brain while raddled understands

That illness brings both good and bad

And we can choose to some extent

The kind of life we had. 
 

Supernova

The timeline is complicated

But unforgivingly straight 

Before the night We shine

We burn

I’m bright, I know

I have letters to prove

To me, at least.

But Perhaps this fire this inner flash

This drive these files this splash

Are my last gasp

My battle cry

Before I start to fade.

I’ll rage against the downwards force

Oppose it with my will

I’ll go down fighting

But I know

I’m going downwards still.

I see it clearly now and then 

I catch a glimpse of truth

And I ignore it

And push on

There’s f2%k all else to do.

Rocking

I crashed and burned today, 

my body just refusing 

To move the way I wished it to,

I stopped and pain ripped through.

My friend appeared and so I asked

For help.

She did, of course.

And so I glided home

A passenger

 all tucked in tight

But weary to the bone.

My partner saved me at the gate

And placed me on a throne

Of rocking chair and threadbare stool

And gave me water cool.

I cried, I have to admit now.

I cried, the tears were hot.

Because I have so much to do 

But I had quite forgot,

That moderation is the key,

I have to pace myself.

Because a swoop begats a dive

And I can’t face myself.

And yet I’m here at almost 12.

I’m sitting up alone.

Because despite my limits clear

I still must make you hear…

Make you understand – 

 this Disease does not define me

Confine, oh yes, it does that well

But best me? 

Not a hope in hell.

Silver spoon

I look for a silver spoon

To help the medicine go down 

The bitter taste sticks around

And reminds me that 

Life is not all sugar

It’s not so sweet at times.

But then, sugar isn’t really sweet

A history stained with tyranny and tears. 

Shielded by marketing and greed

But it fixes the rancid flavor of illness

Of incapacity

Of sloth.

The rotting smell of disappointment

Exhaustion 

And fear.

The spoon ladles out the syrup

Sticky, strong and thick. 

And drops it, streaming over the cracks 

Covering them fro a moment 

But not for ever.