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!)

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About Mrs Parkinsons

Views of family life and Parkinson's Disease, from a should-be-less-selfish wife. This might not be pretty. Find me on Twitter @MrsParkinsons
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9 Responses to The Sponge

  1. Julia Mould says:

    I can totally relate to everything in your MrP nos 1, 2 & 3. I’m finding no. 3 particularly draining of late, and no, you are not wrong in saying it’s emotionally debilitating to the person who soaks the rest up as, if that’s the case, then I’m a rubbish wife too!! (and I’m not. I like you am juggling many balls and sometimes we get lost in the greater picture because of this).

    Fantastic you have seen a counsellor. I wish my dearest would agree to seeing someone. He wants us to manage everything on our own, but I think it would help him enormously (and me too) if he would just open up to someone else.

    Sending you love and hugs MrsP

    xx

    • Julia. You love. Honestly, you deal with so much and I utterly admire you. No 3 is my tough, tough tension spot too, the place that turns me to tears, but I’m so hopeful that with guidance (after all, we are mere mortals who aren’t really equipped with the best tools to deal with all of this yet) that we can create a better, happier, warmer place. I so wish your MrP would consider getting outside help. I thank my own lucky stars that my MrP will do this for us. Thank you for your support. I appreciate it immensely. You have mine too. x

  2. Again, my heart hurts with this…
    I am all of these…

    Becky.1 really only comes out when I’ve got the energy to fake it or for some reason feel well enough to seem like the ‘old Becky’… the one everyone is so quick to say that they miss when they catch glimpses of her… I would love to stay there, if for no other reason than everyone quits treating me like I’m sick when Becky.1 is around…. That look of pity goes away as do all those god-forsaken questions about how I’m holding up that I am sure I should be grateful for I suppose but more times than not just remind me that nothing will be ‘normal’ again… ever…

    Becky.2 is really the typical me… I’m more tired than I should be… I’m more stiff than I should be… I hurt more than I should… I’m sick and I’m always going to be sick and that just takes the wind right out of me… Becky.2 isn’t always angry but is always on the verge of anger… Here, I feel my disease and I wear it and people see it and I’m reminded that this is my new ‘normal’ and that my ‘new normal’ sucks beyond measure…

    Becky.3 is when I’m too tired or too shaky or too stiff or just too blasted sick of being sick to not be angry or to not be selfish or to not care about acting like an ass… Where I should be thankful that people love me enough to want to help, all Becky.3 can see is that I can’t do it myself… Where I should be thankful that people love me enough to want to know how I’m doing, all Becky.3 can hear is one more question about my illness, not about me… Becky.3 is tired.

    All of that said, Becky.3 needs someone who loves me enough to call me on it… Someone who will say, “I love you. I’m sorry you’re sick. That said, grow up and realize that whether you want the help or not, you need it and you’ve got it and not everyone is so lucky!” No one around me deserves to be less than 100% just because I’m sick… Nothing in what you’ve written makes you selfish or a rubbish wife, it makes you human… I think the first thing we all have to remember is that that’s all we are, human… no more, no less… and we all need an extra measure of grace… whether we’re physically sick because of Parkinson’s or heart sick because we’re watching someone with Parkinsons…

    Love…
    Becky

    • BeckBeStill. Please, don’t apologise for responding with so many words and feelings. (I saw your tweet, but couldn’t respond at the time). I love that you feel able to explain things to me. You help me understand what MrP feels like, and as much as I wish you and he (and countless others) weren’t going through this, take comfort that you’re helping me along the way. I just hope I can be dignified and graceful in the whole process. Wish me luck. I’m glad you’ve got people around you who love you so much. Sorry it’s taken a few days to respond, I saw your message but have been out of my office for a few days so couldn’t respond as quickly as I would have liked. Love MrsP.

  3. Parkywife says:

    Like most things in life, this disease affects the bearer and the bearer’s companions so differently. I wish my spouse would “anger up” a bit. He accepts the position with equanimity, and calmness. The downside of that is that he appears to have lost a “joie de vivre”. Indeed only today I asked him when was the last time he actually laughed. He couldn’t remember. He is controlling his sadness but with that too comes a price- a control on his happiness. So whilst it is ghastly we have to accept that we all have to find a way through. And partners do not need to be forgotten – we too have to find a way through. It is our future too.

    • Hey Parkywife, lovely to hear from you again. Isn’t it funny (sad funny, not ha-ha funny) how everyone has a different take on it. I think that’s one of the hard things. Someone asked me the other day, what MrP’s prognosis was, and of course, there are no definites. MrP has an attitude of ‘it is what it is’ so there’s been no feeling sorry for himself, which I admire and appreciate, but he definitely finds it harder to laugh these days. Hearing him roar with laughter is a joy, when it happens. And yes, it’s our future too. I try to hang on to that! I have hope that we will find a way through, I’d just rather do it with some joy along the way too. Love MrsP.

  4. Helen Scarr says:

    It’s not my partner but my father who has PD and I’ve been living with him temporarily for the past 5 months now. The thing that I find hardest about the PD is I never know whether his behaviour is a ‘symptom’ of the PD or meds, or is this just what he has always been like. My parents split when I was about 9 so I’ve never really lived with my Dad until now (I’m 25). I have spoken to my mum at length about his lack of energy and general laziness (I pretty much do all housework and cooking since I moved in) – she said he’s always been like that! He seems to go from one obsession to another at the moment, first it was playing his new guitar, now it’s a music composition programme which he spends at least 2 hours a day on (he is a musician by trade to be fair). Again I worry that his meds are causing the obsessive behaviour but my mum says that sounds just like him…. Maybe the PD makes him want to spend all his time doing the things he wants to rather than things that need doing, or maybe I just never knew my Dad very well before now 😦
    I wish all of you luck and love for the future, whatever it may bring. It’s only 3.5 years since my Dad’s diagnosis so I know the worse is definitely yet to come.
    H x

    • Helen, Goodness, I always learn from you. Thank you. I think you are amazingly brave. I hope your Dad appreciates you. MrP has always had an obsessive nature, but we also think Parkinson’s has been around for a long time, so it could be that the two things combine, I’m not sure either. MrP’s chosen obsession now, is the Mac, where he sits for hours sorting his music playlists. We’re both comfy with this obsession though – it’s the least of many evils. I don’t like your last line, but I absolutely agree, although the emotional place we’ve been in, hasn’t been fun either! I’m sure there are some bright spots somewhere, and you, definitely you, deserve lots of them. Love, MrsP

  5. Pingback: A mountain range not easily surmountable | mrsparkinsons

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