To my Dad

How very very strange, sad, but also sort of lovely. I just had a work email from a client who is very supportive and kind, generally. There was nothing of note in the email, but it (strangely) made me cry.

I think it’s because I miss my Daddy. That person who is always there for you. That person who would love you even if you robbed a bank or won the nastiest person of the year award. A person who just simply thinks you’re wonderful and sees fantastic stuff in everything you do, even if there really isn’t.

Here’s to my lovely Dad.

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It’s starting with a little ‘c’ today, but I’m going to try and make it so it starts with a capital ‘C’ and then one day it’ll become all capital letters.

I need to focus on courage, Courage, COURAGE.

I can do this.

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Protecting my honour

Where do I start? I feel really sad today, even though nothing has changed since yesterday or the day before. It’s not the melancholy I mention in a previous blog, but one that’s a bit raw and closer to tears.

The summer has been hellish. I should feel refreshed. I feel dog-tired.

MrP has been convinced, as I’ve mentioned before, that I’m having an affair. This conversation has been a rolling one, where it bites me on the ass every few hours. I’ve been in the dock – the judge, jury, policeman and not to mention a spy – pressing me for the truth.

The truth is that I’m not having an affair, but it would be easier for MrP’s poor brain to hear that I have been lying, so that he knows his brain and thinking process are fully intact.  I can’t imagine how awful this must feel.  Yet, I am not doing anything any differently than I would have 9 months ago – when he would have happily put his life in my hands – but now he can find dishonesty in any of my actions.

I understand – now – that distrust of a partner is a common trait of the drugs MrP is taking. It’s made me realise that if I had taken time to learn about the common side effects (beyond the gambling or sex addiction I had heard of, and which seem far worse) then I might have been better prepared for the onslaught that came this summer.

Even throughout our holiday – which I’d saved for – I was distrusted, called a liar and a cheat – not in those words, but they summarise them. It was a continual groundhog day.

One of my best friends – who MrP has chatted to about his situation* – asked me if I was being entirely honest. To this day, this question upsets me a tiny bit, that she doubts me. And if she, of all people, is wondering if I am being honest, what the hell must other people think that MrP might have downloaded to?

MrP is extremely convincing. When he’s with others and at work, he is fine. It is just with me that he has a problem.

Then, after weeks and weeks of feeling smaller and sadder and like chunks of my personal strength were being chewed off and spat out, MrP lets me know that his specialist has mentioned Parkinson’s Plus, which apparently, if he has it, means that the drugs won’t work so well and he could be wheelchair bound in 18-36 months.

Was I able to jump to MrP’s support? Was I hell.

At the time, it was another shock, another session, 36 or so hours after the last. Another thing to try and find more strength and bounce back from.

It was a shocking moment as a wife. I did not do my job well. Never again will MrP go to his doctor without me – my excuse was that he seemed just to be going for maintenance visits and I am running a business and extremely busy trying to protect us financially – but I’ve learned that lesson too. I was wrong. The news was too much for MrP to hear on his own and I should have been there so we could process it together.

Yet, I can’t tell you upset I have been about having my honour questioned and lambasted every few hours for the last few months. Parkinson’s Pinball cuts me to my core. I might be many rubbish things, but honesty and integrity are huge to me. And here I am being questioned by those closest to me. Four people have asked me if I am having an affair after talking to MrP. One person said to MrP that ‘maybe it’s payback time’ because of his past indiscretion. It is not payback time on a personal level, but I am trying to sensibly manage all the feelings it creates.

I wonder if my friends think maybe I’m being cruel at home. I am scared and tired and pressured, but cruel isn’t who I am. The truth is, it is incredibly hard to support MrP like he needs it when I’ve been under an emotional attack.

He’s been looking at all my emails, my documents, my blackberry, my Twitter messages, work phone bills, my train tickets. He finds ‘evidence’ that isn’t there. I don’t mind him reading my stuff – there is nothing to hide – but I don’t like being treated as guilty.

I cannot possibly prove that I am not having an affair.

I don’t know how I feel about him *downloading to my best friends. In many ways, I find this ok, but in others it upsets me in ways I’m not sure I can pin down. Partly, it’s because I feel it’s not a safe place if I’m going to get MrP’s views come back to me. I don’t mind hearing a different point of view, hell, I welcome it, but I already know MrP’s views, I don’t need to hear them from friends. I know they would always be loyal to me, my kids and MrP, but it just feels awkward to me. Like I say, I can’t pin it down.

I can understand people thinking that I might be having an affair because I need support and love in our strange situation, but I am not. I am not. I am not. I am not even going to someone else and downloading. There is no one else.

MrP and I, thank goodness, had a fantastic talk with his oldest friend – and godfather to all three of our children – the day we came back from holiday. It has helped MrP see that the drugs are working overtime. This is not him. This is not who my husband has ever been.  He is trying so hard to address it, and I honour him this. 

He is helping himself address it which is fantastic. We have set up tactics. I won’t use my blackberry as an alarm to wake me up (as that makes him think I’ve got it close by to use it in strange hours – I absolutely admit that I love my blackberry – but it’s because I enjoy work and getting occasional texts from friends.  It’s a ‘normal’ world in there.  Either way, I will try not to have ‘crackberry’ addictions.) I will ask him if he’s worried about things, calmly, so he can ask me daft questions and I will try not to get upset and feel the need to justify innocent actions. I need to take my emotional responses away.

We are going to try and find a counsellor so that we can talk this through and find positive actions we can take, and prepare for the next stage in our Parkinson’s journey.

I’m hoping this part of the journey is done, but I just don’t know what is coming next – emotional or physical. Googling anything is a nightmare – you can’t possibly tell what might be our Parkinson’s or someone else’s Parkinson’s.  As far as I can gather there is no typical course ahead. We just need to step forward as bravely as possible.

Love, MrsP.

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Pinball Parkinsons, cruise liners and metaphors

Forgive me, my writing skills (eh? writing skills?) are rubbish today.

I feel like my Groundhog Day emotions are akin to the little ball in an arcade pinball machine. I’m waiting. I will be sprung into the game quite suddenly, by a spring and a flipper shooting me up a blind alley and into a glass case where I will bounce and bob around, hitting one thing and rebounding into a different direction, before eventually, after a seemingly long emotional time, but probably just a few minutes, I settle, trying to make sense of the situation, waiting, to be flipped up again, maybe tomorrow, maybe the next day, maybe not at all. 

Afterwards, I gather my focus and strength and get on with my day, making sure the kids are good, business is going well, people around me cared for — just like most other people on the planet do; we all have things that are going on in our lives. Work, kids, stuff… these are my normal, safe things, thank goodness, and I don’t take them for granted. 

Through the pinball machine’s glass topped case, ie, from an external perspective, it probably looks like we’re having fun.  It looks brave and jolly, and fast, and bright and shiney. It looks like ‘Keep Calm and Carry On’.

Pinball is not the game MrP is trying to make me play. He does not want me to feel confused and chaotic at these moments. It is part of our circumstances, our past, our current, our future. He is trying extremely hard to get to grips with some of his new emotions, but in trying so hard, the flipper sometimes gets hit with more velocity and the glass case seems to press down.  It must be incredibly, horribly difficult for him, not knowing whether where a happy medium of trying might be. I am grateful for him realising, and trying, but am not asking that he pushes himself so hard. The extremes are fairly mighty.

I am sure, he, more than I, feels he is in his own pinball machine, controlled not by me and a flipper, but by drugs, circumstances and an illness he does not want.

What I’d prefer to be likened to, bizarrely, but aptly right now, is a ship, perhaps a tanker, or sleek, sophisticated cruise liner, either way, one that is smooth and steady and carrying precious cargo.

From one extreme of feeling disregarded by MrP to now being vitally, scarily important to his everything, our marital ship needs self-respect, strength, love and warmth to navigate steadily ahead, protecting those in our care.  We need to move in a direction we are both comfortable with; dealing with intermittent icebergs, dodging them skilfully and adeptly.

I cannot be a speedboat, not after our history. Trying to turn me into that will not make me change my emotions any more quickly.

He’ll be glad to know that I can see a good destination. A sunshine on the horizon.

If only we can get past these bloody icebergs.

Love, MrsP

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Parkinson’s Groundhog Day, the 5.59 am nightmare

I hardly know where to begin. Parkinson’s has bitten us on the bum in a weird way. I’ve written 2 blogs in the last week or so, both angry and sad and frustrated and confused. It didn’t seem right to post them; they didn’t answer my questions either, something my ramblings previously did.

MrP has entered a new place. It might be sleep related – or lack of sleep related, it might be the drugs, it might be because he needs a holiday, it might be because he is slowly slipping down the slope we fear. The one place he finds solace is while working.  He is more himself there.  

MrP is convinced I’m having an affair. I am not. I never have had one and don’t plan on it now. I find it, from a selfish perspective, strangely insulting. How can he know so little about me?

I keep reiterating that I think for 5 of us. He thinks for one of him.  Having an affair, as bad as our problems have been, does not support my values and massive need to do the right thing by my family; my children. If nothing else, what sort of lesson would that teach them?

We are aware that it’s the drugs and the lack of sleep that is making his head spin. His insecurities have been hidden for years, not on show to anyone, although I knew what they were. And now they are coming out full-force. One moment he’s MrP, then later, he is worried and concerned and horribly sad; ego and confidence gone. His brain has been working overtime on ‘clues’ that he thinks prove I’m having an affair, when those details wouldn’t have made a diddly-jot of difference a few weeks ago.

I know it’s partly because he is thinking that I’d act in the same way he would, if the situation was reversed.

He’s also full of remorse. He understands, now, after so many wee-hours to think about such things, how hurt I was during the years he was having an emotional affair. He now gets, I think, how that seeped into our home; how damaging it was to our relationship and my sanity. I still don’t think he gets how hurtful it was that some friends and family thought I was a nutter during that time; he is persuasive and calm and many thought nothing was amiss, beyond a jealous wife. But the trouble is, I’m not jealous by nature.

Bizarrely, looking back, I could almost condone the bloody affair; what I cannot get over easily, is being treated like an idiot and horror by the man I thought I could trust, a man I thought was on my side. A fortress was built, and now he desperately wants it to come down.

But as luck would have it, MrP saw sense just before the Parkinson’s diagnosis. I understand that as part of my commitment to not cut and run, we need to find a way to make our marriage stronger and closer.

Not easy with the history we have and the future we share.

But committed I am, and beleaguered with a new anger for the last few mornings when we seem to have started our own strange Groundhog Day. I can tell he’s been mulling things over since waking in the early hours, dawning on another ‘clue’ to show I really am having an affair. The conversation starts again, as maddening as Sonny and Cher’s ‘I’ve got you Babe’ at 5.59 am. (If you haven’t seen the movie, it’s fantastic and one of our favourites – I’d just rather not be living it).

MrP told me a few days ago, that I am 95% of what makes him happy. I nearly fell over with shock, again. It’s a hell of a corner to be put into, not least when I was told, wisely, several years ago, you are responsible for your own happiness. Other people can’t create it for you.   The pressure is horrible.

So, here is the man who fled our house every day because 95% of what made seemingly him happy a few years ago was his friendship group and his ‘mistress’. And now it’s come about face. And it’s an about face that I have trouble with, frankly. I just want a balance between all the wonderful things we have. MrP and I, kids, friends, work, home, etc… He also wants us to be more connected and together, things I’d like too, but he ideally wants them NOW, because he’s insecure, when neither he nor I can control the emotions flying around.

But what MrP isn’t getting is that one of our joint needs, BP (before Parkinsons) was for space.  Not a lot, just a bit.

Independent to a fault, neither of us like being pushed into a corner; we are far more generous when given an option to do something and we choose it. Now, I am well and truly in a corner, physically and emotionally — by the one person who I thought would understand that – and gobsmackingly, the person I gave ridiculously large amounts of space to make the right decision and come figuratively ‘home’ when he was emotionally gone.

And it all scares the bejeesus out of me. 

If anyone has any wise words or ‘been there, seen it, done it’ thoughts, I would so love to hear from you.

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Doris Day fans?

When I was just a little girl, I asked my mother, what will I be?
Will I be pretty?
Will I be rich?

Here’s what she said to me….

Que se-ra, se-ra
Whatever will be, will be
the future’s not ours to see

Que se-ra se-ra.

I used to sing this song to my children at bedtime. (Lord knows how it helped them actually sleep!)

That is all.

Love, MrsP

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Melancholy is lazy, pressure an excuse

I read 3 little inspired words in a book just a few days ago and they’ve stuck with me. Melancholy is lazy. I’d like to credit the writer for the inspiration, if only I could remember where I read them.

Melancholy IS lazy. It’s a fence-sitting spot where minimal action is needed. It’s a mood-hoover, sucking energy out of life; a negative emotion that isn’t quite making the leap to happy. Nor can it get up the vavoom to be angry. Frankly, melancholy is rubbish.

This morning, these words, combined with some off-chance thoughts from my lovely daughter, inspired some action. Thoughts are nothing without positive steps forward.

So by way of a ramble, my natural disposition is happy. This is great, I love it and embrace it. There is a downside to this, of course, which creates a pressure in my own head to be happy at all times, even if I feel pissed off. If I see someone in the street or see someone at work, my happy face comes out, masking inner feelings. If I’m angry, I don’t know how to vent that effectively.

But, being around others is a sure fire way to fuel my happy – I love being around other’s smiles, energy, laughter. Putting on a happy face, even if I don’t necessarily feel it, serves to make me feel not just better, but brilliant.

So, I like happy. I don’t mind that it seems to annoy the hell out of our grumpier brethren.

Apparently it is also a trait my daughter is now recognised for. She let me know this morning that people generally say they never see her not happy. It was music to my ears, knowing that my daughter is sunny and is at peace in her school life. This in the middle of secondary school. Now if that isn’t a social pressure, I don’t know what is. Of course, I know she has moods, and she and I talk a lot about what is going on in her world (long may that continue).

But melancholy has slipped into my head a lot of late. It’s pressure, I know, for my thoughts of MrP and I’s future, our current workload – I feel more workhorse, than mum, and that is not a good balance for me. I also need some balance for MrP and I so am more of a human – and a nice one at that.

But a hell of a lot of people are pressured, and for far more important reasons than me.

Pressure is an excuse.

So. What am I going to do about it?

–Well, for one, for the next 7 days I am not going to grumble about workload. Work is good, I would hate not working (I actually love my job) and not enough work would be a far worse pressure. So I need to shut up with the mental moaning.

–I am going to work on removing the frown that is increasingly on my forehead. Who needs more wrinkles at my age?

–I am going to physically smile more – and find more reasons to smile. Hell, I don’t need to count my blessings. I know they are all around me, all the time. I am going to focus on the great and the good in my life.

–I’ve been wanting to do something for me, so I am going to count smiling and focusing on happy as that ‘thing’. This I can take the time for, because it’s not a project that needs a lot of focus or time, it’s probably the littlest thing I can do for myself that’ll have the biggest impact.

I, the undersigned, banish melancholy.

Anyone got any good jokes?

Love MrsP.

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