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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….

    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.

    Tangled

    So, since my last post I have had my first proper operation, a full foot reconstruction.  Oh you know I don’t do things by halves!

    I had the operation on 24 May and today is the first time I have felt like picking  up keyboard and writing about it. To say it has been hard would would be the understatement of the year. Partially because the operation itself was substantial (involving chopping and chipping and breaking and mending) but also because the medications I was prescribed for the pain relief had a bad interaction with my Parkinson’s drugs!

    Frustratingly, this is something that could’ve easily been stopped if somebody had actually Thought about the possibilities of one type of drugs not working too well with another set of drugs. I fail to see how that is not an obvious thing to check but anyway it seems that it had never been done before. So one of my actions when I get better is to make sure that I get Parkinsons UK on the case so that doesn’t happen some other poor soul.

    Anyway, the upshot of all of this fun and games has been 4 1/2 weeks (and counting) disability, pain, such amazing displays of love by my friends and family that I have been rendered speechless a few times and that is very unusual I can tell you, such tiredness I have never known in my life before, such space and time to think I have never known in my life before, and an intimacy with the interior workings of the NHS prescription process that I never want to know again.

    I am I hope over the worst now, but I still have a long way to go. But in the process I have begun to learn a few things:

    • I have to respect the limits of my body…in the past I have chosen to ru. Myself into the ground in my rush to ‘do’…I have not been able to do this
    • Patience is a necessity not a virtue. Without patience I will not get through this nor the future trials and tribulations I will face.
    • Uncomfortable feelings and emotions do not disappear if you distract yourself with action. By which I mean that if I feel sad, going off and starting a new art project will not dispell that sadness. It will displace it for a while but it will not erase it. That uncomfortable feeling will persist until I allow myself to ‘sit’ with it, and allow myself to feel it. I have in the past, I know now, done everything in my power to avoid discord, conflict, sadness, anger…all the ‘negative’ emotions. When, in reality, it’s ok to have a sad thought, it shows humanity. To feel is just human. This has been a massive realization for me. I feel shell shocked by it but strangely released. Life isn’t quite as ‘full on’ now as a result.

    Anyway, I also realized how much I missed this blog so here I am. Still holding on. Patiently now though, for now.

     

    Standard

    Do you know, I used to blog almost every day… My life was so different then. All life is change but I’m craving even-stephen normality.

    I have just finished April which is Parkinson’s awareness month and throughout that month I presented 30 poems for each of the 30 days of the month. Each poem discussed a specific aspect of Parkinson is. I’m about to prepare a small book in order to raise some more money -i’d like to sell some copies and that will raise some money for Parkinsonsresearch.

    Transitions

    The truth of often stranger than fiction…apparently. Following the last few months, dear reader, I have to agree. You wouldn’t believe where I am now compared to the last post. But here’s a poem that tries to explain.

    At first the relief buoys you up.

    You stay upright and straight

    And joy is the main emotion –

    Not hate.

    You breathe deep

    Sharp air of rebellion

    Your refusal is an entrance ticket

    Just say no

    And in you go.

    And plates are mismatched

    And meals eaten lazily

    With friends.

    Until

    One day you find

    it’s been days since you mined

    The thoughts of a bona fide

    adult.

    And bed is a haven

    To read in, and cry in.

    And think in.

    Thinking.

    Think in a haphazard way

    Of shards you would say

    And hopes blown away

    And walls rising up

    Not surrounding protecting

    But holding and festering

    Dark spaces hide faces

    And tears.

    And then, as the fairy lights flicker down

    And the recycling fills

    And another scandal spills

    A slick of slack talk

    You go under.

    The water is cold now

    The shore far away

    It’s digging in deep time

    You shudder each step

    And yet

    Your new compass

    Relentlessly aims you

    Beyond deep heavy waves

    Beyond all those who hurt you.

    Until you break

    Step out of the structures

    Undo that wrapped round you

    And stand up

    And study what is still intact

    And feel sun and soft breezes

    And suddenly realise

    The chrysalis split.

    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

    Report-age

    You probably know I am in the throes of a massive house and life move….surrounded by packing cases, bags for the charity and mounds of laundry, I am contemplating life choices. Walk with me a while…

    Apart from the obvious catalysts for these reflections, I came across my old school reports this week as I delved into hidden crevices and cupboards. Now some might cringe at those old, monochrome, unfocused snaps of our pre digital selves. No filters or finessing here. But me? I love them. I love trying to piece together the family history, match faces with legendary stories passed around at long ago family parties. And so, as I read the reports I noticed a strong pattern emerging. I was consistently praised for, encouraged to do and generally surpassed expectations in creative writing and art. And yet, I ended up studying maths, physics and chemistry ‘a’ levels along side art. And then I studied for a physics degree and THEN became a tax advisor.

    I never lost my thirst for creativity, I just rechanneled it from oils, charcoal and inks into legislation, management processes and quantum mechanics. Whenever there was a received wisdom, I challenged it, turning it in its head, picking apart. While this was definitely very interesting and engaging, it didn’t always pay off professionally when the majority of my colleagues couldn’t see the point (for which read fee earning potential) of my explorations. But then….sometimes it takes a while for new ideas to bed down. I had a cohort of fellow early adopters and many of them now, years later, are reaping the benefit of being a forefront of a new development or idea. Me? I made the fatal mistake of not sticking around….I went on to the next creative opportunity, and then the next and the next. A personal choice not to stay to ‘farm’ that which I had hunted down. No wonder I look one proudly when my cat plays happily for hours chasing moths and other winged creatures only to give up with noted disgust when they are finally caught and stilled.

    But back to that schoolgirl. Why did I go down the science route? Why did I not follow the creative? I remember trying to decide between physics and design. I Chose the challenge. I always have. And I am now going to be embarking on the biggest challenge of my life. A good choice but difficult. Perhaps i need to study my reports’ advice some more…

    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.

    Hand in….

    To an evening adventure….a poetry society workshop. We listened to poems about objects and then had a crack at making poems about some of the fascinating objects tha ad been brought along… I chose the glove stretchers…

    Madness, really

    The lengths we go

    Skin held tight tight

    So blood won’t flow

    And tools invented

    That actually prevented

    Movement.

    Fetching.

    Stretching

    Once on

    The kid would grip

    Dainty dancing tips

    Of fingers numb

    Their wearers dumb.

    As yet

    No etiquette

    For bare hands

    To run the gauntlet

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