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….

    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.

    If. Or, Pollie writes a poem

    A blank page is an opportunity.

    It beckons

    But I stall.

    I’m shy, uncertain,

    What if this is all?

    All I can produce.

    All I can get down.

    Small and stuttered,

    Slurred and slowed,

    I’m starting to slow down.

    What if I never find my voice

    What if it’s gone from me?

    Stealing into the shadows…

    It’s a possibility.

    We all have a blade,

    A certain end ahead,

    And Kipling got it right :

    I just can’t lose my head.

    I’ll keep on being stubborn

    I’ll keep on saying ‘no,

    it’s ok I’ll be fine’

    Because I will be 

    in my own time
    .

    I love my friends, my family

    I know they want to help

    But independence truly rocks

    So help me help myself.

    Fall

    image

    <edited to remove the rubbish that dictating results in…stoopid iPhone>

    It’s a funny thing, when you have an illness like Parkinson’s, you forget that other things can happen to you too. You think u r  armoured against other illnesses and injuries. Sadly, you are wrong.  The irony is, until a couple of days ago, I was actually getting to the point where I had forgotten, okay almost forgotten, but I actually had Parkinsons.

    This was a development. A good one.

    And  now? Well I feel like I’m back at the beginning of the board. I have slid down the snake. Why? Well I have an old injury to my neck and it has decided to kick in and make itself known. The result? I have been hobbling around the house for three days now  like a very bored and grumpy old lady. I am now getting to the feeling sorry for myself stage. I do not like this stage it is the worst one. I got some serious painkillers yesterday from the doctor and they work! Unfortunately, they also make you feel like a zombie.  Appropriate given the day I grant you but still not what I’m after.  The sun is shining outside and the leaves on the trees are the most beautiful colours.  I think I will leave this screen and go outside and make them rustle  with my feet.  Much more fun.

    I have never seen a zombie doing that !

    Parked

    I have an itch, I have a scratch
    I sometimes wonder if I can match
    My old ways, my triumphs,
    my career success.
    Will I ever, like I once did, get power dressed?

    My glories have gone now
    I’m off the fast track
    I’ve stepped down and slowed down
    I’ll never go back.

    But I am not slower
    Well, life hasn’t receded.
    I’m still in the game girls
    I’m still very much needed.

    I’m just not a desk bunny
    I have two small boys
    They scream and they scooter
    They make so much noise.

    But they need their mother
    They don’t need a shell
    I have to get past sad
    And keep myself well

    It’s boring and hard work
    I’m not good at sense
    I don’t go to bed right
    I drip self defence.

    I’ll get there I’ll make it
    I’ll nail it spot on
    I have to not
    Let’s face it
    If I don’t I’ll go wrong

    So have patience
    Bear with me
    Hang in there with me
    And one day
    You’ll see me
    And not think PD.

    Push:Pull

    image

    I’m in a funny place at the moment. Funny weird, not funny haha. Unfortunately. I’m finding that my status is changing. I’m becoming a ‘disabled’ person, guys. People wait for me. People hold the door for me. People are kind. I’m not always good with kind, even though it is well meant. It’s very hard. I’m so tired and hesitant. And I’m becoming aware of what lies ahead. Hopefully waaaaaaay ahead but there nevertheless. So I’m getting my life together and have mapped out a plan for this month …. 

    So, here’s my plan…30 days:6 goals:1 life

    I will fill in the details with you as we go thru June. I really want this to be a new start, an acceptance. I may be getting deeper into parkinsons but it’s still me in there. I’m still here. This plan is designed to make that be the case for a loooooong time.

    Senior

    I had a senior moment today. But I’m not senior. I don’t think I am anyway. I thought I if lost my handbag – forgot I’d locked it safely in the car completely. It slightly freaked me out. Is this a slippery slope? Oblivion or fatigue? I have a ‘thing’ about losing my marbles…that’s why I stared the blog originally, to be my record. Have I finally got something to record? Will my boys read this one day and see where I began my descent? Who knows. Who really ever would want to know?

    Walls

    How was your Bank Holiday? Mine was peaks and troughs but mainly peaks. After camping we came home, via the beach, and hugged bricks and mortar again. Not really of course although I suspect Other Half might have been tempted…then we were joined by a very good friend and her children for 24hrs of hilarity..but wow, I hit a wall of exhaustion at the end..

    I’m exploring complementary therapies at the moment so will post a proper description soon but despite the on the knees weeping wave of weariness that whacked me hard when I stopped last night, I’m beginning to feel little pockets of energy returning. Baby steps…

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    Bubble

    Image

    One of the most disconcerting and frustrating  aspects of Parkinson’s is how it hampers communication. My mind is going a mile a minute, thoughts and ideas are spilling out and yet I type at a snails pace. So by the time I get it on screen, I’m bored/tired/moved onto the next idea. I tried to write a list of UFO’s yesterday and gave up because of this. My posts have got shorter too, I notice. My bubble closes in a little more. So not like me but in the same breath, me through and through.

    I tell you this to partly explain why I haven’t eulogised quite as much recently, and partly to explain another happy facet of PD.

    I leave you with a sketch. if you know the song, sing along…