In New York

In New York

Monday, 30 April 2012

Not feeling too chipper

Pauline, many thanks for your comment - you're so right, MND is bad enough without having to make decisions about things like the PEG. Thanks to you and Steve for your advice to Roch - greatly appreciated let me tell you.

Two of Roch's brothers visited this week - Mairt and Eoin. Both commented to me separately about how Roch was in such good form, and indeed it was true. Of course he was in good form, with two of his brothers spending all day and all evening with him. We all enjoyed their visit. The house had a lively, chatty, up-beat feel. It's not always like that. Since their departure, and Kate's departure back to Exeter, it's quiet. Roch woke up on Friday morning feeling weak and shakier than usual. His intention was to go to work, with the electric wheelchair, in the taxi - and arrangements had been made for a friend to accompany him. We got as far as getting showered, dressed and then he realised that he just couldn't do it. It didn't help that the rain was sheeting down, but I think he just felt he could not manage it anyway. Yesterday when he woke, his right leg refused to move. He rested for half an hour and then it randomly decided to cooperate again. We didn't do much yesterday. It rained hard and we stayed indoors, watching DVDs and munching on chocolate and pringles! Very enjoyable. But today there is a sadness in the air. We slept late and I have found it hard to motivate myself. We talked about the changes there have been recently and the changes to come. Neither of us is feeling positive. Roch says he doesn't feel very courageous today. You don't have to feel courageous, I told him. You are so brave all the time. It's okay to be scared. I'm scared too and I'm not facing what you are facing.

I could list all the positives, and there are some, I know that - but sometimes it just feels like a wasted exercise, because the scales are balanced so heavily against the positives. The big fat fact of MND tips the scales over every time and the more time that passes, the heavier the MND side gets. Let's try to list some positives:

1. He's not dead yet.
2. He's not in pain.
3. He can still swallow

Okay, okay so now you're saying these are not true positives, and a bit depressing in themselves. I take your point - so let's start again:

1. We have met so many wonderful people - people living with MND, their Carers, so many   wonderful health professionals.
2. We have learned so much more about each other
3  We have learned to value each other so much more
4. We have learned to live more in the moment and appreciate the beauty around us
5. We have had some terrific holiday experiences which we wouldn't have had
6. We have come to value our wonderful family, neighbours and friends so much more
7. We have discovered the hidden strengths in ourselves and in each other.
ER -
8. We have a brand new kitchen

Okay I'm running out now, because the ever-looming fact of big Fat MND crowds in on me. People you meet will tell you stories of other tragedies, sudden deaths and young mothers who die of cancer, and I'm sorry for all of them, and I know we don't have a monopoly on tragedy, but you know what? I think it's okay to rage at Fate, to feel angry and resentful, to feel scared and alone sometimes. It's a crap deal.

By the way - those other tragedies? Hearing about them doesn't help. Like I say, I'm sorry for all of those people, and their families and I'm grateful that I haven't got cancer (touch wood) and that Roch doesn't have cancer (touch wood again) but it doesn'/t make me feel any better to know other people do.

1 comment:

  1. Hi Deirdre
    When I first read your blogs I thought that you whinged a lot (sorry). However, I now realise that all us MNDers can whinge to each other about what a B***h it all is but who can you speak to? A counsellor, perhaps, but that's it. Reading your blogs lately, I get it. You speak for Roch.. and you, a carer. Being a carer must be awful; you are helpless to do anything to make it go away and can only watch from the sidelines,trying to make your spouse as comfortable as possible while their body deteriorates. People telling you, "I know, it's awful, isn't it, I have arthritis in my thumb"? just makes you mad. Why can't they just show a bit of empathy, say, "I'm so sorry, it must be grim", or, even, "I don't know what to say". As for that old adage, "There's always someone worse off than you"! I want to scream when I hear it. Of course there effing well is, but how in the name of 'him upstairs' can that help? I don't care about those worse off than me, I'm afraid, I'm too busy trying to deal with my own devastating illness.
    At least you are voicing your opinions; never be sorry for that. I wish my husband would tell me how he feels about it. He is very reticent.
    Keep up the blog. Strangely, I enjoy reading such honesty. Take care. I hope we will meet at Wisley in June.x