Living in a box

This is not a winge. Honest. More an observation.

The wedding was lovely. My Boys were fab. My feet are wrecked (new shoes). The cushion did it’s job!

And yet.

I found it so much harder to connect. To talk to family and friends. Why? Is it the PD or am I just knackered? I’m starting to wake up early and not get back to sleep – this morning especially. I have no idea but it’s a pain in the posterior. I used to be sparky, lively, laughing, optimistic. That’s me really. But dark thoughts come out, my voice loses its expression, I know I’m boring. I HATE boring. It’s my personal Room 101, this box. I’m looking for the key but it’s blardy elusive.

At least the cushion worked.

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12 thoughts on “Living in a box

  1. I recognise that. I’ve been feeling more distant, too, over the last year or two (since I was diagnosed with Parkinson’s). I probably never was a sparkly sort, but I’m much less engaged than I remember being. It might be PD – it might be tiredness (and PD can take at least part of the flack for that, but having young children doesn’t help, either!).

    And yet it doesn’t seem to be permanent. I think knowing what it is helps – and trying to get enough sleep – and maybe the meds (although I’m not taking much at present). I also feel better if I’ve managed to get some proper exercise, like what I’m told I ought to do (but which I am naturally disinclined to do, particularly over the summer holidays when I have to be there for the kids). I also feel better after a good long walk. Which isn’t the “proper exercise” my physio wants me to do (it’s not aerobic/cariovascular enough), but I reckon slogging up the steepest hill I can find is close…

      1. Yup. Doing exercise is boring. Especially doing exercise for the sake of doing exercise. I miss my cycle commute (nixed when I had children – and then nixed even more when we moved to a village with long, scary roads to the towns, where I didn’t have a job anyhow). This is why I like walking in the hills, because I do it for the scenery as much as anything (including scouting for painting locations!).

  2. I’m glad the wedding went well and the boys were good. We went to a wedding recently, too – my mum’s! – and my four-year-old daughter was a “flower girl”. She was brilliant, as was my seven-year-old son, who wore a proper tie – at his own request.

  3. I’ve had PD for 10 years and just found you -I resonate to everything you say. And yes – the worst thing about this thing is the way it robs you of yourself. I used to be lively, enthusiastic, sociable but now I am SO boring. I hardly recognise myself as the person I was ten years ago.. I can just about manage to ‘switch it on’ for half an hour max, then I’m completely played out and can’t cope with being sociable and just want to go home to bed and the radio. I’d love to have a partner, companion to share day to day stuff with and not to feel so alone but children are grown and gone and scumbag husband said PD had changed me and bogged off with healthier model (And yes I’m afraid I do beg the universe to sock him with Pd too). Am trying with a friend to start some sort of support for young onset PD – but without PD being the main issue – if that makes sense?

    1. Count me in – it makes perfect sense. I am not defined by PD and I will fight my hardest not to be but at the same time I think having some friends who understand the challenges of PD would be brilliant. Let me know what you come up with!

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