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.

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….

    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.

    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…

    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!?

    Certainty

    There is a very well-known saying that there Are only 2 certain things in life: death and taxes. Well, I have been exploring a related third certainty: the need to work in order to provide sustenance. There is a lot of philosophising around the ‘post work’ model of social structuring. Basically, as machines become more intelligent and capable our requirements for human workhorses will reduce to such a level as to render the concept of work redundant in itself. We will not have to work any more. Discuss.

    You probably know I am doing an MA in visual communications and my project this season will be all around this idea of the post-work social landscape and how you can think about it visually. I’m thinking about the possibility of a new kind of landscape painting/drawings/whatever… Instead of a geographical or physical Landscape what about the social world? I was in the library all day today looking at this and it really is quite interesting in a geeky kind of way… Looking forward to sending some more stuff in your direction so you can have a think. It’s really interesting when you get into it… And hopefully the artwork that comes out of this will be a bit different. Well, let’s face it, it wouldn’t be me if it wasn’t slightly off the wall would it?!