In New York

In New York

Monday, 27 April 2015

Is Everybody Happy? Then let Everybody Sing.

So a couple of people have told me that they worry when there are no updates on the blog. I’m sorry if you have been feeling worried by my silence. You know what it’s like when you’re feeling low or sad – it’s hard to motivate yourself to do anything. Sometimes all you can manage are the essentials and believe me, there are plenty of essentials to manage. If anything major was happening, please be assured that I would let you know – even a short post to update you all.

So, yes, I have been feeling low and sad lately and I haven’t felt like coming to these pages because I haven’t wanted to share those feelings and not to mention it would have felt dishonest. But I’ve decided now to tell you that I’m feeling sadder these days, but that’s okay. I don’t expect any of you to do anything about it – there isn’t anything you can do, after all. It’s enough for me to tell you, and get it out. All I want you to do is read this. Really.

Six years in June. It feels like a long time and lately I’ve been feeling tired. Maybe it’s taking its toll now and yet I can’t afford to be tired at this point, there’s a way to go yet. I’ve been feeling anxious. Every day I wake up and ask myself the question “Will I be able to manage today?” All I can do is get up and try. There hasn’t been a day yet when I haven’t managed but there have been plenty of days when I’ve felt exceptionally sad.  I know there are those of you out there who are living through a lot worse and I know there is worse to come for us. But sometimes I can’t help thinking that it’s pretty bad, after all.  It helps to acknowledge that. Sometimes positivity eludes me.

Don’t get me wrong, I have a lot to be thankful for and good things have happened lately – I’ll get to those in a minute – but first let’s just talk about what’s not so good. I want to be honest. Well, it’s just relentless, as every Carer of a person living with MND knows. It’s definitely more tiring now and physically demanding. The trusty hoist is in constant use. It’s a great piece of kit and yet I deplore the necessity for it. Up and down and swing about…

We said goodbye to ‘Old Rollie’ last week. I well remember recording the arrival of the dreaded rollator, years back. (See blog post 26 March 2010). Tom’s look of horror when he clapped eyes on it, Roch moving painfully along the street, stopping to rest every now and then. It became his most trusted companion and gave him some limited independence in the house for a long time – but the time of the rollator is over, the time of the wheelchair has come. No more walking now, or even standing, without the hoist.
Roch and Rollie in better days
The hands are becoming a problem. For the first time ever, the right thumb refuses to budge. No movement at all. The little finger on that hand has also given up and the fingers on both hands are slow, clumsy, the hands claw-like.  It’s difficult now for him to text or type.

His breathing seems improved since March, however. Perhaps he had some kind of undetected virus then, as he doesn’t seem to be struggling as much. We haven’t been in to the Royal Brompton – all projected dates for the sleep study have been cancelled, as no high dependency beds have been available. Today we proactively cancelled as his tummy hasn’t been well. But we’re not desperate to get in, especially since his breathing seems improved since March. Listen, a funny thing happened when I called the hospital this morning. I explained that he wasn’t feeling too good and might have a ‘bug’. They agreed that it would be inadvisable for him to go in. “I know what it’s like,” the lady said, “When you’re feeling ill the last place you want to be is in hospital.” We had a laugh over that one. To be fair to the woman, I know exactly what she means.

I've been feeling under the weather lately, too – lots of headaches and aches and pains. I guess much of it is stress related and I haven’t had the motivation to do much about it. It all wears you down and I guess it’s not much fun for Roch when his main Carer is doleful and unwell. It sometimes feels like a heavy responsibility, constant cheerfulness. As my mother used to say to us children before my father got home from work: “Is everybody happy? Then let everybody sing!”  This was the signal for us to stop complaining and give the man the illusion that all was well with his family, at least until after he had his dinner. Then we could line up with our little problems and troubles. He could take it better on a full stomach.

Some days are better than others and I had a great day last Friday. I will say, I love my job and I love the people I work with (you know who you are). Sometimes I go in there and I do wonder, “Will I be up to it today?” You know what? I always am. Last Friday I had my annual appraisal and I was overwhelmed by all the positive feedback.  I mention it because it reminded me of how lucky I am to be doing a job I love, a job I know I do well. I get tremendous support there, from colleagues and from management. Missing People, I salute you.

I was also thrilled to find out on Friday that the Chawton House anthology of short stories will be published in August and I will be attending the launch in September! The book will be called ‘Beguiling Miss Bennett’ and my story ‘Gorgeous George’ will be in there.  Yay!  I recently received a draft agreement from the publishers and I suspect that I will be signing my life away but hey who cares! Proper published at last. Autographs later folks…

A piece on ‘Wheelchair Candy’ found its way into the Spring edition of ‘Thumbprint’ (The magazine of the Motor Neurone Disease Association).

Fame at last!

Those of you on facebook will have seen my post. I feel very privileged to be in the same edition as the wonderful Maria Moo Watton, who sadly passed away recently. Her beautiful smile and tireless optimism will not soon be forgotten. The pages are packed with  MND champions, like Sarah Ezekiel, Liam Dwyer, Greg Broadhurst, Tony Bray, Sarah Lannie, Sandra Smith and so I am in very good company…HRH The Princess Royal also gets a mention in there somewhere…


This is what will save me. My job and my writing.

It’s not all miserable. We can still have a laugh. We have lovely evenings here, with Kate and with our Tom when he’s home. I have great friends and neighbours, a lovely sister and supportive brother, an excellent Counsellor and support from our local branch of the MND Association. Roch’s family are all there for me, I know it. I don’t forget these things, it’s just sometimes hard to beat down the sadness/anger/fear and remember the good things. See how I feel the need to reassure you? It’s because all I want you to do is read this. Really, that’s all I need from you right now. Thanks.