Shoe

When I was diagnosed with Parkinson’s back in 2007, I did what everybody does. I bought the Micheal J Fox autobiography. The thing I have always carried with me since then is the story he tells of his wife reminding him that there was no point in being cautious in his career choices because there was no ‘shoe to drop’. Basically, bad things happen and they happen to you sometimes, not just other people. So get on with LIFE.


Scroll forward to today and the global wake up call that is Covid19. What does it mean for humanity? Will we realise it is a chance to redirect ourselves? It’s very very hard to change your life priorities and focus. It’s very hard to start to distinguish between received habits and what we really need and want to be doing. I have seen so many declarations about getting back to core values. They are straws in the wind. Light and disposable. They do however, show us trends.

So I am thinking at the moment. Just thinking really. Trying not to scoot into a complicated action plan that involves a complete home organisation regime, shiny sinks and homemade dishcloths. Plenty of time for dishcloths later. Now is the time to really contemplate the enormity of the current position and the advent of the New Normal.

And counterintuitively, this is a time where I find myself grateful for the Parkinson’s diagnosis all those years ago. I have had my ‘shoe drop’ epiphany already. I have changed my life as a result. It’s all here in the blog. But it is no time for an update. Normal 2.0…. a

Joy?

How are you doing? This world is a little strange these days and I am still trying to work out which way is up. But then i guess there’s plenty of time to work it out. The basic rule is to watch the bubbles. They always rise to the surface. So that’s my plan such as it is. Take stock, find what gives me joy, focus on that, repeat for my loved ones. Easy….right????

So, i wrote that paragraph yesterday morning. So far so peachy. But life isn’t like instagram folks. Sorry. I have fissures of failure and crevices of crises running through me. Yesterday some of them opened a little more. Like cracks on my hands from all that washing. And,sigh, washing up.

I was going to go on and be perky by suggesting i start a joy list but today i will not be so presumptuous. Today i will lie here in bed as my fingers react to the Parkinson’s drugs and slowly come to life, allowing me to type this post. I will listen to the boys being instructed in how to make me toast and jam for my Mother’s Day breakfast. And i will be happy for that. And that’s it. No grandiose perfect lifestyle statements today. No too high standards. Just small steps for today. And that’s the hardest thing for me. Reality hasn’t always served me well. Sitting with it a while is today’s challenge.

Little house in the big woods

Make no mistake, we are in the woods. This time it is real and we need to wake up and work out what our new normal will be like. Do we try to hold it all together and maintain the status quo as best we can? Or do we step back, apply first principles and re8magi e whatnot,al could look like.

Dear reader, if you have read any of the past posts on his blog you will know which one I’m plumping for….hello opportunity!

So I am reactivating this blog. It has been my companion and my confessor over the years of change since my Parkinsons diagnosis. Recently it has been quiet…I will fill you in in due course but suffice to say life has not been equally placid!

I hope we can navigate this new landscape together. I stand by my strapline….not perfect,but good. Isn’t that all that we need? Welcome back everyone.

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.

Steps

So, I am now seven weeks post op and the cast is finally off…it came off just over a week ago and it has been a mixed blessing really. It is way more comfortable to sleep at night now…I just lose my eyes and off I drift. This is luxury in the extreme and I hope I never forget that. But in the day it is still very painful. I have done some snooping and it’s quite normal for swelling etc to be there for up to 6m after the op so I am settling in for a marathon rather than a sprint.

What am I focussing On? Well, this experience has taught me a lot of lessons…and I can summarize them as follows. I will actively appreciate and care for:

  • My friends and family
  • The level of support I have had has been stunning. My loved ones have scooped me up and carried me, sometimes literally, over the last few weeks. I am taking some of them out this evening to try to say thankyou but it will never be commensurate with what I have received from them. Friends are your chosen family, and mine have gone beyond even that in some cases. I am so so lucky.
  • My health
  • Unexpected? Well, my health is what I would politely term as ‘buggered’ what with this foot, the Parkinsons and other lovelies I have yet to discuss with y’all. Don’t worry, I will, but not now. What I mean is I will not ever ever ever take any movement, strength or ability I currently have for granted again. I completely shut down a number of times over the past weeks and it was SCARY. The gratefulness when I felt the energy surging through my body when the painkillers worked or the Parkinsons meds kicked in is almost overwhelming. I pledged to maintain and then improve my health levels. I intend to keep that promise to myself and my loved ones.
  • My independence

  • Well, I had a glimpse of the future, depending on others and the NHS. I didn’t like it. One bit. I will fight and fight hard for independence as long as I can. I am feeling militant.
  • My mental strength
  • I have always known I am stubborn. I have always known that I have been blessed with intelligence too. I had to draw upon these resources big time. When your body is shutting down and you don’t know why it is very easy to panic, I know I did a number of times, but it is also possible to grit your mental teeth and ride the storm. It takes practice, which unfortunately, I had plenty of opportunities for, but it is doable. I meditated myself silly but hey, it worked. I logically reasoned out my predicaments to myself (very frustrating to those who have different problem so,ca g approaches I admit) so that I could face them with reduced fear. I learnt how ideal With bad news, how I react In a crisis, what it is like to draw on others’ strength and trust them.

    And so I sit here and think about the future. I have to plan to achieve and maintain these priorities. And I have to understand myself so as to succeed. Next time we will go into that particular briar patch….

    Flip

    So massive changes continue chez stitch.  I won’t  go into detail for the sake of other people and also because I am quite frankly so bore, battered and bruised by it all its unreal. But, this process is making me re-evaluate and question so many of my long held practices and behaviours, it must be a good thing.

    One thing I have been thinking about is how people represent themselves and how one person can see one thing while  another sees  something different.

    I wonder whether that presentation is because of manipulation or whether it is just due to the hopes, background and yes, prejudices, of the people doing the viewing.  So for example, if I see somebody I want to be loving and kind, I will see that person as loving and kind despite any behaviour pointing in an opposite direction. I want them to be that kind of person and so I make them that person in my eyes.  In the short term, I’m happy, but in the long term? Well, in the long term disappointment is the only answer. In fact disappointment is the least of the problems isn’t it?  If I think somebody is kind and good and then they turn out not to be… What do I do? Do I question my own character analysis skills or lack off, do I move on, do I try and fix things?

    The answer? All of the above and more. I am nearing the end of the tunnel… Not out of it yet but I can definitely see a little bit of daylight. See you on the other side…

    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!?

    Revamp

    It's October, the air is crispier and so is my life. Stitch Towers is under new management (mine) and life is both challenging and stimulating. I am middle aged, I admit it, but I have never had to fend for myself until now. It's not a barrel of laughs but I'm not drowning quite yet. I am unhealthily interested in household organisation tho. I admit.

    This whole experience is making me realise that despite the plethora of domestic bliss/homemaking blogs, books and advice, what goes on behind closed doors will remain a mystery until we choose to disclose. And most of us don't choose. So, the stories I have been hearing recently from friends who have trusted me will in the main remind hidden. And that means that the perpetrators of domestic unhappiness will continue unhindered and will never truly understand the impact of their behaviour. I come from a quite well healed area where middle-class guardian readers like to drink their Pinot Grigio wine sitting in their beautiful gardens. But that image is just that, an image. Such unhappiness and frustration can lie underneath it all.

    I am choosing to walk away from unhappiness. I hope this blog will become happier and more frequent as a result. I have missed you guys.

    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.