A mountain range not easily surmountable

I’ve always stepped a careful pathway. I’ve always been someone who considers consequences.  Frankly, it drives me nuts.

I’d like to make a rash, damn-the-consequences choice, but I don’t.  It’s just not in me.  And true to form, over a period of a few days, a few different occurrences happened, leading me to make the most horrible ‘right’ decision I’d ever made.

I’d come to a point in the journey where the decision became essential.  It wasn’t about bravery or sadness or frustration or freedom.  It was about necessity.

It was about me supporting our children, getting me through a God-awful situation.  It became, nearly, about survival. I don’t quite feel comfortable with that last sentence, it’s too melodramatic, but it was certainly about survival of my sanity.  Survival of my ability to function, to look after our children, to work and create finances for our wellbeing.

I was asked by a friend, what I’d advise our daughter if she’d been on the same journey as me. It was simple.

In that terrible moment, I could see a dim light through the knotted and tangled trees. I needed to head towards it. I needed to protect myself to protect our children.  Too many times had I been confused by the anger and frustration of MrP. Too many times had the children seen me distraught.  Too many times had they comforted me.  Too many days had the insults shocked me, curling me into a ball of sadness. Too many days had I spent not being able to think straight, to take positive steps, to take action that would help us.  The situation wasn’t getting better and I needed to do that for us.

In fact, MrP came to the same conclusion at nearly the same time. He told his neuro psychiatrist that he didn’t think there was much left in our marriage.  At our counsellors visit the next morning, a conversation he taped without anyone’s knowledge, we agreed to separate.

Trying to change his views would be like trying to convince a far right wing preacher that God didn’t exist.

He’s a staunch believer in his own truths, he’s angrily shaken ‘evidence’ at me, he’s tried to convert other people to his religion, and sadly some now believe.  (I simply can’t understand why people who have known me for years would think I would have such a major personality change to do all the things MrP believes I do.  From one admitttedly dodgy, jokey Tweet and some normal work lunch meetings, I feel I am now evil personified.)

It was a terrible decision to separate. But really there was no choice at all.  I could not keep going down the other pathway.  Overall, I was grateful, if not a tiny bit infuriated, that MrP wants to separate from me too, when I’m doing no wrong.  But it makes the separation better for the children, for him, for me.  He can hold his head high, get on with what he needs to do.

Yet, conversely, if our marriage had been strong beforehand, I would have stayed, even through this.  Separating was not about Parkinson’s.  His anger and unkindness, after all the things he’s presented to our relationship, was just the end of the line.

All I truly wanted, in all our years, was a safe place to fall. I’ve not needed it a lot, but just to know someone was there, is a pretty big deal for me.  My marriage never provided me with a safety harness (I’m sure I didn’t provide all the things that MrP needed either).

The decision became about catching myself, creating my own safety harness.  Before the fall was from too high of a mountain.

I know that it would have taken something truly, truly dreadful for me to feel separating was the right decision.  Our marriage had gone through redundancies, financial problems, an emotional affair, friendship problems, the diagnosis of a chronic illness.  And after all that, I would have stayed, I still would have been there for him.

That is, after all, who I am, and one of the things I want to teach our kids.  But equally, I don’t want our wonderful children to learn that it’s ok to keep taking unkind, disrespectful knocks, even if they’re down and out.

Loyalty is a wonderful thing, but not if the receiver doesn’t appreciate it.

I write this in hindsight.  It was too awful to put onto a blog at the time. My thoughts were a whirl and sorting our family was the most important thing.

MrP is currently sleeping on a makeshift bed in the living room until he finds a flat.  Mostly, he is calmer. His anxiety levels have decreased hugely.  He seems happier which I am glad about (on many levels). It won’t be an easy pathway ahead, I worry about that.  After sadness, our children see the sense of this separation.  I thank my lucky stars.

There have been a handful of horrible moments, but they aren’t every other day like before.  On one particularly lovely Sunday morning, I was called a sociopath, in earshot of the kids.  I know he’d thought it through because I saw an Internet printout of its meaning in his ‘evidence’ folder while we were at the counsellors. I should have known that insult was coming).  I was also told that I’m part of a sex circle, involved in telephone sex, and it’s not clear, but it seems it could be with both males and females.  And you know what? I don’t mind if that’s what other people do. To each their own, and all that.  It just isn’t me.

I’m hoping, at the end of our anger and frustration, we can be friends. I would like to still be around for MrP, but he completely distrusts me, so we’ll have to see.

I hear that the UK medical system doesn’t recognise The Othello Syndrome, or ‘suspicions of partner infidelity’ found on a Parkinson’s forum.  This angers and saddens me.  I know, through this blog and reaching out to people, that it, without doubt, exists.

I worry that people in our community think I’m awful for separating from MrP.  How could I do such a thing to him?  But they don’t know our past, what’s happening behind closed doors.  They see MrP number one, and a glimpse of MrP two.  Just a few people I trust know the situation more fully.  I have to let the others go – no mean feat for someone like me, who has always buoyed herself up on people’s good thoughts.

I would like to scream out in frustration at times, I would dearly love to be angry with MrP, even now when things are calm.  But I can’t.  After the sadness and shock dies down from one of our sessions, I am left with the fact that MrP is not himself when he chucks a grenade.

Our counsellor thinks separation was the natural course – with or without this situation.  The problems and our different values before Parkinson’s were a mountain range not easily surmountable. In fact it galls me that if I had left MrP beforehand, people would have got it, they’d have understood. It galls me that throughout his obsession with our neighbour, that I was discreet.  Once again, I spoke to only certain people.  Now, after trying so hard and for such a long time, I’m seen as the crap one, when I’m not doing anything, yet MrP isn’t discreet.  This annoys me intensely, yet going against that would also go against my values. Would I be proud of myself, of my handling of this, if I went out bleating about it all, making MrP feel small?

Our separation isn’t about the shiny bright lights of freedom.  It’s about two people who grew apart, who found that life together just wasn’t right.  This decision came, when there really wasn’t any other decision at all.  At the end of it, I wish us both well. I actually think we are better off apart.  I think – and I don’t know this for sure – that MrP is happier for it.  In his words, ‘it is what it is’.  Now it’s time to move forward.

Pebbles amongst mighty stones

Horrible insults have come in the last few weeks. There will be more, I know, I’ve already been told I’m a habitual liar and mean, that I’m very ‘clever’ (meaning devious), and a few days ago, that I’m not very bright (because I apparently haven’t covered my tracks well). Annoying and upsetting; insults that continue to pull you down if you hear them incessantly. But these are superficial these days. Pebbles chucked alongside mighty stones.

The final insults – the ones that unwittingly at the time, lead me to make what I call the worst ‘right’ decision I’ve ever made – had me crying for a couple of days fairly well non-stop, even after the decision was made. If I got a grip, the tears would come back at the drop of the hat; I stayed in my bedroom on a long Saturday morning, crying, feeling God-awful sad, lost; hiding, like there were no safe places for me. And that was hand-delivered by MrP.

MrP is convinced I’m having affairs (for those who haven’t read any previous blogs). Actually, that’s changed, he now says they are liaisons. He has told a friend of mine he has proof at every level (he can’t, because I’m not doing anything). He has expanded the most innocent actions into his belief of my badness. He has seen me do things I have not done. Most of these I cannot prove, they were just he and I together somewhere. His word against mine.  Helpfully and sadly, one of the things I’ve apparently done was to a neighbour, and the neighbour knows it didn’t happen.  I repeatedly say these things are not true, but the answers or explanations aren’t enough for MrP.

MrP, in his conviction of my awfulness, has told people around our home community. For weeks, I haven’t known who knows what, who believes him, who doesn’t, who cares, who doesn’t. It hurts so much, I can’t explain it. To walk into a room and to know that I once felt a trusted person, yet now am probably no longer, is awful to me. It’s a direct hit on values of mine that I hold very dear.

I can’t go around telling everyone that MrP is wrong, that it’s the medication and the Parkinson’s; that his experiences are getting muddled up in his head. Because that will make people doubt him, and possibly pull away from him, and that smacks of being so mean and unkind when he very much needs support and kindness. I have to rise above it, although I would dearly love to wear my honour on my sleeve. I’ve had to learn to not listen to my ego. Some people, the doubters, will have to stay as that. I’ve talked to people I’ve trusted, for sanity, so that some understand the situation; understand that as much as I’m hurting, MrP still needs support.

But this still isn’t the final insult.

If I was hearing MrPs story, it would be hard not to feel for him, to sympathise with him – when you hear that his wife could be doing these terrible things when he’s in his hour of need. He needs love, and she’s buggered off mentally, having fun ‘because this is payback time’.

But it simply isn’t true. What I do is look after family, I work, I have time with friends every once in awhile. I like all of those things, I’m lucky. More recently, I’ve done family, I’ve worked, I’ve gone to friends in distress. I’ve functioned, not always very well.

I’ve always been fairly strong as a person, but strength has wained in this time, sadness is everywhere, it is very, very, very dark.

Yet, even with a husband who distrusts me deeply and is making supporting him nearly impossible, intense sadness, the worry of the affect on our kids, and a community who doubt me, I still hadn’t reached the final insult.

The stones, amongst the pebbles, the final I-can’t-do-this-any-longer insults, came when I knew that MrP was out to convince all of ‘my’ people too. My only family, best friends, old boyfriend (we’ve remained friends). The people who I would go to feel safe and trusted.

These people have been targeted too, so even they had a niggling doubt before I talked to them and explained. He is, I hear, very convincing.

But the point is, MrP fully believes and cannot be talked out of his beliefs. I am horrible in his eyes. He feels I have let him down, very badly.

And how must that feel to him?

I imagine he can’t help it, but I think he has convinced medical support that he’s fine. The medication stays. And I understand that to a certain extent: the drugs, although are having a terrible affect on me, do make it possible for him to work and carry on with his life in positive ways. And he’d be lost without that.  The medical people are supporting him, not me, and that is their job.

I think, even before the diagnosis, he thought our marriage wasn’t good. If he felt it was worth saving, why on earth spend so many years emotionally gone, with our neighbour?

He seems hellbent on destroying my reputation, but it’s not that. I must try and remember. He’s hellbent, really, on convincing people he’s fine, that he’s all good. But the trouble is, it’s at my expense. And I can’t tell you how much it hurts.

But on re-reading that paragraph, I’ve come to recognise that my reputation is not me. I know who I am. True friends know who I am. And I have always known who they are and this, thank God, hasn’t changed our relationships (maybe, it’s made them even stronger). I mustn’t let this situation – or MrP’s negative thoughts – change me.

A wounded Parkinson’s soldier

I don’t quite know where to start. I always want to be respectful to MrP. He’s a good man. He’s a human being and I like human beings, generally. I think most are pretty damned fine people.  MrP is doing brilliantly at work. Most people see him handling this Parkinson’s thing brilliantly. Hats off to him, big respect.

There is just one fly in the ointment. He is very angry. With me.  Few people see this. His paranoia has come back in droves. He suspects I am having an affair, if not several of them. My emails and phone texts are all found to have meanings in them. He looks at them alot. He thinks I lie to him. My work twitter is apparently in code. (I have stopped tweeting. I love talking to people in my work community, they are great fun and just like a good natter, but it distresses him too much. MrP’s closest friend suggests I carry on, but I don’t like the arguments it can cause.)  He has seen me do things twice, that I know of, that I have not done.

He is angry that I am not a doting, loving wife. Yet how can I be either of those things when I have no idea when he’s going to start the next argument or disagreement – about what I’m doing wrong? I’m wary, all the time. I’m in tears several times each week; I have no idea what I can do to stop him being frustrated with me, when I’m not doing anything differently (except getting defensive and cautious). When we can’t even talk properly at the moment, in case we trip on a danger word. When he can see bad in anything I say or do.  When, if he reads this, he’ll see more lies.

He, the man who would have happily moved on with life if I’d left him a few years ago, must surely be a scared boy inside. But he’s making being here so painful. It’s hard to function properly when your husband – and father to your children – thinks you’re a liar and a cheat. It’s hugely hurtful, distressing and depressing. Because I’m not either of those, and frankly, they just go against the grain of my values. And worse than all this? It’s distressing the kids. And that just hurts so much.

But his anger to me is always nearly there or right in front of me. And so the cycle starts. How can I be loving and doting to a man who has just accused me of being a liar and disrespectful to my family – when they are everything to me? My behaviour before all this was never questioned. He knew I was trustworthy and kind. Now? I’m apparently neither.

We have conversations – or horrible arguments – and he puts 2 and 2 together and quotes me back the terrible things I apparently said.  We have rows, where we both say things we shouldn’t – we are completely new to this situation – but mine are used as evidence later.  I now feel he’s telling people that I am mean.  He says I bully him.  I know he’s told several that he suspects I’m having ‘liaisons’.  The grapevine is in action; others have heard. Even I am starting to get paranoid – who is he telling about my ‘lies’ or the ‘horrible’ things he thinks that I say and do?

I have never felt so lost. My daughter, my lovely daughter, when we were hugging because she saw I was upset said, “no one has a road map for this one, Mum”. She’s right. I have no idea what to do, how to proceed. I feel terrible that my children are comforting me, when I should be a rock for them.

We’re on about every other day at the moment, where he’ll be pleasant during the day and then chuck a little grenade or a big bombshell in the evening.  I go into defensive mode.  I really don’t like dissing MrP. He’s a human being and one of the things I do understand right now is that we just aren’t helping each other. Toxic is the word that springs to mind. He is poorly, and bottom line is that the drugs or the illness are making him into someone that sees me differently.

It’s not his fault. He didn’t ask for this. It’s very sad.

He wants me to be caring and loving. I want him to be caring and loving. What I always come back to – much to his dismay – is that his actions showed he didn’t give two hoots (that’s the polite version) about me before Parkinson’s and now he wants an instant return from a loving wife.

But from my perspective, it’s like putting no money into a savings account, and expecting it to come up with retirement funds.

I think the scariest part for me right now is that he is utterly convinced he is right. And I am unable to convince him otherwise.

Especially, when he finds far more comfort – and I can’t imagine how hard this must be – in thinking his brain is working well and mine isn’t. Let’s face it, it’d be far easier for him, if I said, ‘yes, you’re absolutely right’. That would be a strange comfort for him. I can see him jumping with joy at the thought of it.

Yes, I have struggled to get my head around Parkinsons and our new situation. Yes, I am struggling to be devoted right now.  I am far from perfect, I know I have not done this thing like Mother Teresa. But I’m trying to make good and right decisions all the time. I haven’t run and we did have spells where everything seemed like it was heading in a good direction. But MrP is throwing grenades at me – not at Parkinson’s or work or anything or anyone else – he’s throwing them at me. Far too frequently.

How is a wounded medic supposed to look after a wounded soldier who threw the bomb?

I am just asking for some time to figure things out without pressure, but that’s like a maelstrom going off in MrP’s head. I understand he is not well and the pressure must be truly, truly awful.

I know he’s poorly. I can look at this from an outsider’s perspective and see it’s terrible for him. He’s not well, I should take the high ground and be a better person.

The trouble is,

I can’t begin to get to the high ground when I keep getting shot down.

Postscript.

I have thought long and hard about posting this blog.  I do not want to disrespect MrP – or anyone else with Parkinson’s.  Indeed, I had posted it, took it down again. And here it comes up again.

Part of me thinks its wrong to put it online, but on the other hand, I need to write about my MrsParkinson’s journey.  I have more to say, more developments to write about, and the writing helps me heal.

Yet, more than that, when I had an email conversation recently with a gentleman who took DA’s for years, it felt like a light had been switched on in my dark room.  It seems better to post it so that anyone else can tell me they understand or don’t understand, they are angry with me for writing such things, or even better, find comfort because they feel they’ve been in the same dark room, and now with our joint light switched on, they can see others in here too.

Two lovely friends sent me links below that are extremely useful to understanding this problem better.  It appears to be far too common with certain Parkinson’s medication.  I reiterate. MrP is brilliant to everyone else around him.  He is a good man.  He has never been like this before, this isn’t the real him.  But it’s not a massive consolation, when our little world has turned upside down.

http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=dopamine-agonists-and-catastrophic-obsessivecompu

http://www.mind.org.uk/help/diagnoses_and_conditions/paranoia

The Great WWW – Western World Worries

I’m very aware I’m not myself. Usually I’m a cup-half-full sort of gal and I’ve definitely been feeling my emotional cup has got a sneaky leak in the bottom.

Don’t get me wrong, I am blessed with the most wonderful children in the world (I know, yours are wonderful too, but mine are just frickin’ fantastic for me and I am a lucky, lucky soul to have them). I am lucky to be able to (hopefully) teach them things that will last them a lifetime. Love, kindness, loyalty, respect, dignity (for themselves and others), enjoying the little things. I am lucky to see them grow and turn in to bigger wonderful people, learning great things from others. They are doing well in school, they are happy and well-adjusted, they have lovely friends.

Beyond MrP’s Parkinsons, we’re in relatively good nick.

I have a great little business which gives me possibilities and I work with some fantastic people.

I have large future financial worries, but we’re not destitute now, thank goodness, and we can afford a weekly shop. I don’t like our heating bill, but I don’t currently worry about how we’ll pay it. We’re warm and have a nice home.

This blog has created endless relief. New friends, who are happy to support and show care, are popping up and I appreciate them hugely. People I would never have known without this pathway.

Long may all of these continue, although I know life can change on a dime.

We don’t live a world where rape and beatings and murder are common. I worry for my children, but it’s not about day to day survival, where water or shelter is scarce. I don’t hear them cry because their tummies ache for food.

I wonder how I came to be this woman with lucky Western world worries, middle class worries if you like, who feels so annoyingly sorry for herself.

I am always aware that I am blessed, but my glut of sadness has taken over of late. I have concerns for my own personal future, based on too many sad years. That alone is what makes me feel incredibly low. I wonder what advice my Mum would give me right now. What would I tell my own daughter, if I’m lucky enough get to a ripe old age of seeing her through far, far more of her life?

When do I stop feeling sorry for myself? Is that under my control? Just to say enough is enough, or do I need help? How do I go about getting a kick back in my step?

I miss the cheery me, the person who celebrates that little joys are always the best ones. I miss putting the best foot forward when sometimes it’s been hard to put either foot forward.

I miss, now I come to think of it, having hope for my future.

Perhaps that’s what all of this is about. Me, missing my perceived tomorrow’s. Any looks to the future now are accompanied with frownlines. My hopes for my personal future are leaking out of that cup. I know, I know, there will still be little joys and I will find my way. But a future without hope is a grey one.

How do I stop thinking less and acting with more positive intent? Should I just bear with it for the moment, ride it through, or do I need to kick myself up the arse? I should re-engage with volunteer work. That’d be a great start.

Any other ideas, completely appreciated.  Yesterdays and Tomorrows are holding me back from happy todays and that is simply not what I want to teach my kids.  I need to get that kicked.

Love, Mrs P

On consideration

So going through this little journey, painful and slow at times, I came to some conclusions.  I feel a little frustrated that it’s taken a long time; I wished I’d thought it through earlier, but I guess we need the journey sometimes.  

I mentioned to MrP about the three moods, he took it on the chin, and agreed (he was MrP Number One at the time ;)).

I told him I needed to get stronger and instead of reacting (badly) to the terrorist moments, I needed to let him know, calmly, that we could talk later after he’d moved through the moment.

He was entirely in agreement.  We need to talk but just at better times.

We also made another rule. Not an antagonistic word can be spoken after a sip of wine or beer has been taken.  Not even a whisper of one.  It’s then, of course, that it’s easier to talk, but it’s also when our saddest, most painful conversations have taken place.

Simple rules, but hopefully something we can use to move forward with more grace.

So with these thoughts in mind, we’ve had a calmer week.  MrP gallantly has held off on more terrorist moments, which I appreciate immeasurably.

Just a short blog today. 

Love

MrsP

The Sponge

I don’t know if this is the same for everyone else who has a partner with PD, but I’m going to try to explain what it’s like living as the other half, at least in our house, at the moment. I’d love to hear your views, your disagreements, your thoughts.

It may be different in other stages of the illness, or it may be different depending on the symptoms or the people involved. This is my own personal view of PD….

I feel like a sponge, soaking up all the things around MrP and Parkinson’s. His worries are massive; mine are too. They are the same but different.

I think there are three MrP’s.

And from one minute to the next, one hour to the next, I have no idea which MrP I will get.

And it’s only me who gets all three.

It’s like I hit my own personal 3 for 2 sale, where everyone else missed the offer and just gets one or two of him.

We all have moods, don’t get me wrong, and MrPs are swinging like a God-awful pendulum because of his own worries and fears.

So,

MrP Number 1 – the one you all would see – socially or at work – is the lively, gregarious, hard-working, confident and inspiring MrP.  The one with a terrible illness who is coping so bloody well.  MrP Number 1 is, by far, the easiest to love.  He laughs loudly, it sounds wonderful.  Don’t get me wrong, we all have our ‘front’ face for the world at large, but the gap between the front face and the ‘at home’ face has a bigger gap, I reckon, when Parkinson’s – or other health issues, I’m guessing – play their unfair hand.

The second MrP is ill, tired, exhausted, worried, rigid, sad, vulnerable. His head feels like it’s going to implode. All of these come with the territory, I understand, but I can’t know exactly how he feels. He rests, sleeps, paces, spends time on the Mac, head immersed in music. He is calm, but uneasy, unwell. I understand and love him for trying so hard and understand he needs to rest and catch his breath.

The third MrP is a hijacker. A mood terrorist. I don’t know when the next bomb will be let off. The bombs seem to be urgent, something needs to happen quickly – a question answered, a problem solved. This is by far the hardest for me, the Sponge.

The hijackings seem to make MrP feel better – he’s let out his feelings, his worries, tries to get a question answered. But the trouble is, they make me feel far, far worse, and my equilibrium is shot until I pick myself up again. It is a time to dust myself down, and generally just cope.

Parkinson’s has put me in a place where I float at 40%. And I really want to rebel against that. I don’t want to be a 40 percenter now or ever. Yet 40% is pretty good for me these last few weeks. I go higher when I’m in the ‘normal’ world – when I am with the kids, do good stuff at work, or enjoy people’s company.

Without a doubt, Parkinson’s is debilitating and can be emotionally painful for the person with it.

But, am I wrong in saying it’s emotionally debilitating to the person who soaks the rest up?

Maybe I’m wrong, maybe I’m really, really selfish, maybe I’m a rubbish wife. I worry about so many things, that 40% is good. I celebrate this calm place where I am not mopping up my own fears and sadness.

Love, MrsP

(Blog update:   I had written this blog over the weekend.  After realising something in my 3rd blog in this little series, which I’ll post this week, plus we saw a great counsellor for the first time today, my percentage points have increased already. Hoorah!)

Mood hijacking

It’s almost like having a normal mood isn’t ok anymore. I know, that after 2 glasses of wine, that’s an exaggeration, and unfair. But it’s kind of how I feel sometimes, wine or not.
Take Friday 8 am ish.

Me ….(bearing in mind MrP has been up for awhile, walked the dog, just back. We haven’t been in near each other for an hour or so)…

Morning voice: “You ok?”

“Yeah, fine.” (‘Fine’ is a danger word in our house, admittedly so, from both of us.)

“So, you’re not ok?”

“Physically, I’m fine.”

“So, emotionally you’re not?”

A glance around from MrP, taking in that our youngest boy is nearby.

The look says, it’s not a discussion for now. He leaves for the gym.

I think he’s thinking about the previous morning’s discussion in front of the kids. We’d had a ‘conversation’ that ended with me in tears and our 14 year old daughter leaving for school without saying goodbye, which increased my tension, sadness and frustration by several very long miles.

Twenty-four hours later and this new, brief conversation, to me, sounds ominous. Gloom was there, and I’d be feeling it shortly too. Whatever conversation we are about to have, has me feeling like I’m approaching the cliff edge.

An hour and a half later, MrP comes back from the gym.

I’m braced and wary. I’d thought of other things, but it was hard to get my mind off of what was about to come.

He’s normal, calm. I ask him about our earlier conversation about his emotions. Do we need to talk something through?

‘Nooo…. that wasn’t emotional about us, it was emotional about work.’

Silly me! So, why the look around at our son, why the look that we couldn’t talk about this in front of the kids, why didn’t you say you were worried about work?

Frankly, I was cross with myself.

I felt enormously frustrated and sad that I’d let my morning get taken over with fear of troubles and sadness and arguments and groundhog days – over nothing. I need to get this new situation and my reaction under control.

But that’s the (dull) knife edge we live on at the moment. You just never know when a hijack will happen. And ridiculously, they always take me by surprise.  It’s not a bomb going off, it’s a slow gas that starts poisoning the air.

It’s almost like if we could politely dodge it… just move away from the moment, slip away from a question MrP wants to ask or a mood that takes over for a minute; then the mood-hijack doesn’t need to happen.  It’s my responsibility to pull us both to safety.

But I’m weak and worn down. I tend to jump each and every time it starts. We are dangerous to each other right now. I should be stronger and know not to rise to it. I need to get on top of that.

So Saturday night … MrP had some great stuff happen at work last week and we decided to push the boat out and have a meal out (a once regular occurrence that we can no longer afford, nor do we know how to deal with, conversationally). The evening was good, really good. Not one hairy word, just husband and wife nattering over a dinner table. It’s been months since we achieved this. No hidden meanings in conversations, no starting of a topic that would end up in an awkward place. Just nattering. We were calm.

Nice.

Until we got a few step from our front door at the end of the evening. The hijack happened.

A question, innocent at first, but which we both know would turn to something not so innocent, and full of things we just can’t answer yet. Things we both feel pressured and saddened by.

MrP has now gone to bed. I am writing this blog. We are both frustrated and sad. Again.

Love MrsP

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.

courage

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.

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.