In New York

In New York

Friday, 12 May 2017

A Post for Mental Health Awareness Week

It's Time to Talk

Well, hello there. It’s been a long time, hasn’t it? Sorry we lost touch but I haven’t felt much like sharing. I’d like to be honest with you. Over the past few months it’s felt like a slog. If you’d like to hear about it, take a seat and share a cuppa with me. It’s Mental Health Awareness week and we’re all being encouraged to talk about how we’re feeling. Are you in the mood to listen? Or are you going to judge me, pity me or offer me platitudes? Because if so, maybe we shouldn’t do this.

I’ll give you time to decide and if you stick around, I’ll go on.

So - La la la la - here’s a picture of a pug in a swing. It’s pretty cute and maybe you’ll feel your visit has been worthwhile. Enjoy.


 Have a good look and I won’t judge you for moving on now if you choose not to stick around to listen. No hard feelings. Thanks, just close the door gently behind you?

Ok, so, where was I? Ah yes, my feelings. Have I mentioned the Black Blog? It’s this little black book I keep by my bed and when I feel really bad I write in there. Some of the stuff in there is black. But hey, they say it’s good to get it down. Someday maybe I’ll show it to you, but not today. 

My problem with sharing my darker thoughts and feelings with you here, as a Carer - and as a Carer whose husband has his own paid carers/Personal Assistants for some of the time - is that I want you to think I am amazing. In fact, some of you have told me you think I’m amazing and I really don’t want to disappoint you. 
Some of you have told me you view me and Roch as this amazing love story of suffering and self sacrifice. I guess, in a way that’s true. We are both suffering but my self sacrifice is becoming more and more grudging and resentful. Wow! A Truth. Deep breath. 
Are you still with me? What are you thinking now?

Is it because it’s been almost eight years? I feel so tired literally all the time, despite the truly amazing efforts of Roch’s Personal Assistants. I feel worn down. There are days when it is difficult to get out of bed, when I stumble through the day and any extra task seems like too much. I frequently wonder if I am depressed. Sometimes I think I am, but then somehow I pull it out of the  bag, manage my work days and find myself at home again. I find sunglasses very useful. It's easy to pretend that you're fine and that everything's ok when people can't see your eyes. Easier to hide the anxiety. 

That’s the problem with this bloody disease. I was genuinely the devoted, caring and grief stricken wife for a long time. But nobody told me it was going to be like this. That I would feel exhausted and cheated and resentful and that there are days when I feel quite distant from him. It’s not his fault, it’s not my fault. He’s got his own coping strategies but they are not mine. 
Sorry, is this too much? Would you like me to stop now? Just a bit more, then, and I’ll let you go.

There are many positives in my life and I don’t need you to remind me about them, so please don’t. I’m aware of them but they’re not making a difference to me today. If someone asks me to make a ‘gratitude’ list I won’t answer for the consequences.

So back to coping strategies…he has his, I have to rediscover mine. 
How many times have I said I must go back to my writing? Why is this so difficult for me? When I say ‘go back’ I mean drag myself through the mire of my thoughts, disentangle, go deep and face the feelings. Produce something on that most terrifying of surfaces, the blank page. See, that does sound scary. I can’t just sit and write about what doesn’t matter. The words are lifeless on the page. Crippling boredom sets in.

“Write long and hard about what hurts.” Hemingway
Perhaps I should drink while writing.

And Joyce Carol Oates:
“I have forced myself to begin writing when I’ve been utterly exhausted, when I’ve felt my soul as thin as a playing card, when nothing has seemed worth enduring for another five minutes…and somehow the activity of writing changes everything.”
Ah how I can relate to this. Write, write, write. Well, I’m writing now, so that’s a start. 

Our lives have been hijacked. My life has been hijacked, but it doesn’t do to complain. People get nervous - I can see you look shocked and disappointed, shifting edgily in your seat, looking at your watch. Are you hoping I’ll stop and tell you a funny story? Sorry, I don’t have one for you today.

You may feel you have suggestions to make. If so, please don’t, not today.  I’ve asked you to listen, and you have. So thank you. That’s all I need from you at this time.
Remember, it’s Mental Health Awareness Week. Hey, you’ve done your bit.


  1. I can't read and run, so just to say 'I get it' xx

  2. StillSteve (from PLM)20 November 2017 at 20:20

    Not the first time I've read this. Harrowing and heartbreaking. (I wonder about my wife's most private thoughts.) If I believed for a moment platitudes might help, I would pour them out like a river.