Let's not do that again...

I go to bed with that familiar pain through the side of my head, feeling the connecting lurch of nausea with every movement. With a sinking feeling, I know I am heading down the black hole. There is no way of knowing when I will emerge.

Later, he joins me in bed. My stomach churns with every movement he makes and I protest. His reply is sharp and although I know he is always upset when I'm ill and he is feeling down anyway, I'm too far gone to care. I don't think I can answer anyway. I put on my eye mask and find my ear plugs and try to sleep. I must fall asleep because at 2am I wake. It is a hot night and the bed is suffocating. The pain in my head is dreadful and my stomach heaves. I rush into the bathroom to grab the plastic waste bin. Something tells me both ends are about to erupt. I sit on the toilet, cradling the bin on my lap and let Mother Nature take her course. Eventually, trembling, I clean myself and the bin, moving as slowly as I can because of the pain in my head. I get back into bed.

I know he's awake but I can't help that. We don't speak. I lie in the dark and throughout the rest of the night the pattern is repeated until all that's left to come up is a green bile. It hasn't been like this in a long time. Between bouts, I worry about what will happen when he can no longer do things for himself and I am felled by a migraine like this. If he needs me to adjust his position, help him to drink something, help him to pee? This does not do my head any good. I try not to think, push two fingers against the pressure point of pain, try to take deep breaths, but nothing helps. I know he will be exhausted tomorrow, although he is asleep now. His snoring is much worse tonight and my earplugs don't seem to be helping. Maybe I'm just feeling more sensitive.

It's a relief when I notice the darkness in the room is lessening. After one visit to the bathroom I take a motillium for the sickness but that comes up too. Now I wonder if it's worth taking another imigran (I took one before I came to bed but that's long gone). It's over four hours now. Feeling desperate - the pain has not lessened - I stagger to the wardrobe and grope for the medication. Half an hour later I find myself cradling the bin again. This time there's an improvement as there's no longer any need to leave the bed and I'm grateful for this. But it means I'm disturbing him again with spectacular sounds of retching and heaving. Eventually I doze, the pain is still there but my stomach appears to be settling. There's a movement, it must be morning. He's getting up.

"Are you cross with me?" He asks.
It must be because I haven't spoken to him all night. Now I feel mean. "I just can't talk right now, it makes me want to spew." I explain.
"I was hopeless last night," he says. "I couldn't help".
"Don't worry," I say from the depths of the pillow. "We'll talk later."

And we do, when it is evening, and I have slept for most of the day, and kept an imigran down successfully. I have emerged from the black hole once again, totally drained and wobbly on my feet. To be without that pain is like a wonderful gift. I am so grateful to be free of it. Tom has been in to ask me to test him for his RE exam tomorrow, and I have been able to do it! Thank God Maura was here. She has taken my place for the day, and made the evening meal, intervened in the family conflicts, been there for them all - and returned from her trip to Richmond with a gift for me. Has there ever been a better sister?

And so we talk, he and I. He feels bad because he couldn't help me last night. I feel bad because I kept him awake and I tell him how I worried about the future in the long watches of the night. He had the same thoughts. We agree that we will find a way, that we will cope. Now we know, we have to plan for these times. Things seem a bit better now.

He sits on the bed and holds my hand. "That was a dark night," I say.
"It was. Let's not do that again." I smile at that. It's such a Roch thing to say.

At the Hospice yesterday

Well, we did go to the Hospice yesterday. We were asked to be part of a planning meeting for the Hospice Families Open Day in July. The staff involved wanted the parents' input, ideas about what might work for their children, the kinds of activities to organise. It was my second visit and I don't find it easy. I'm hoping with each visit it will get easier.



I thought it was a useful meeting and I hope Kate and Tom do come to the Open Day. It won't be easy for them, no matter what kinds of activities are lined up, but I am hopeful, given some of the input from staff, that if they do come along, it will help to dispel some of the myths around the dreaded 'Hospice' word. They might come to see the staff there as a kind of 'bank' of people there to support them. I am getting there with that.




Two other sets of parents were there and I suppose for me, that was the most difficult part. Steve is 42. He has motor neurone disease and is at a more advanced stage of the illness than Roch. He and his wife, Tracey have three young children. I was surprised at how hard seeing Steve hit me. Bit of a reality check. I know Roch and Steve have been in contact through the PLM website since the meeting and I hope Steve will understand what I mean. I wanted to talk to him, and to Tracey but I didn't get the chance to talk to either of them. I felt shy, too. I wanted to ask him questions about how he was communicating - how did his 'communication device' work, exactly? I wondered at how calm and capable Tracey seemed. I ask myself, will I be able to be like that? Seemingly relaxed and accepting. I felt such admiration for her, for both of them.



Roch talked to Steve for a while and I know he found it helpful. The way the staff made sure Steve was placed beside him seemed a bit contrived to him, but I think if they did plan it that way, it seemed to work for Roch and I hope it worked for Steve. Steve has a blog too and we read some of his posts at home later on. Very interesting and helpful.



During the meeting, Tracey asked if grandparents and cousins could come along on the day, and the reply was that as they were part of their support network - yes ok. Later I felt a rising panic. I don't have a family support network here. It's basically just down to me. But then, a lot of family members cope on their own - I mean day to day, with carers. I guess I'll be one of them. It's pretty scary tho'.



I look forward to meeting Steve and Tracey again at the Open Day.

Families - real and imagined.

We had a good night, last night. Roch and I went to see a play called 'Little Gem' at the Bush Theatre. It's a play about Dubliners, a Dublin family in fact and the playwright really got it spot on. The accents, yes, but also all the 'Dublinese', all those witty and sometimes outrageous things that Dubliners say. Nowhere on earth can you find the same turn of phrase and the same level of constant cursing! Lots of 'spaz' and 'hungas' and 'Jaaysus..'

The play is very funny but also very moving. In fact, we found it a bit close to the bone towards the end. If you ever see it, you'll know why, but I won't spoil it for you. Private tears were shed and hands were clasped in the darkness of the theatre. So it's sad, too, but it's not dreary.


We met the cast afterwards and two of them are from Dublin. Anita Reeves is from Terenure, in fact (my neck of the woods). We really enjoyed the night, so thank you Dympna, for arranging the tickets. I must share one line in the play with you. It really tickled me. One of the characters, after an 'episode' in work, is sent by her employers to see a counsellor - or what she calls 'a head doctor'. The counsellor suggests that she does one nice thing for herself in the coming week. She manages to attempt one thing and at her next appointment, her counsellor rewards her by telling her to do two nice things for herself the following week.


"F*** her! Now I've somethin' else to worry abou'!" Love it.

Donna was here today. Hospice Nurse. We're getting to know her, and she's getting to know us - and if I haven't said it before, she's been really helpful. Roch gets on well with her and he trusts her I think. That's important. Tomorrow we go to the Hospice to attend a meeting for parents. They are having an Open Day in July and you never know, the children might come. I think Roch would like them to come along. But if they don't want to - well, you can't force these things. I'm not sure if they're ready. The idea is that they don't just associate the Hospice with death. It's also a peaceful place and a place of respite, where there is support for families as well as help for patients - all along the way. Anyway, the meeting is for parents in advance of the Open Day, as I say. Let's see how it goes. I'll let you know.

Roch and the rollator

Roch and the Rollator

Thanks for the picture, Mairt. If you look very closely, you'll see we kept a trophy of your visit (Lorcan's shrunken head on the gate post...?)

In other news (so to speak)...I am aware now that a worry for Roch is my keeping fit and well. After all, I am his carer - and as time goes on, he will rely on me more and more. Throughout our relationship, he's the one who has looked after me, me and my migraines. It worries me, too. What if something happens to me? What if I succumb to a terminal illness? It' a nightmare scenario for Roch. It must be a worry for every carer and those they care for. So I have good news for Roch. I have a really good doctor, who sent me for blood tests recently, and the results came back last week. All clear! Well, my cholesterol is a tad high, but not enough to worry about and she's going to keep an eye on it. Everything is under control. (Shurely shome mishtake?)

A National Strategy for MND

We went to the MND Association local branch meeting this afternoon. This is the second meeting I've attended. The first was the Christmas meeting and it really didn't work for me, Father Christmas and mulled wine notwithstanding. It so didn't work for me that I just couldn't bring myself to go to the last meeting. However I thought I'd give it another go and today was better, perhaps it was because there was a focus. Someone was there from National Office to talk to us about the Campaign for a National Strategy for MND, and the new Regional Care Development Officer was there to introduce herself to the branch members present. There was a discussion afterwards and I surprised myself by getting involved. I was feeling quite bolshie and I think that might have come across a bit...but hey, make your mark, Deirdre!

Hearing more about the National Strategy Campaign was interesting, especially for Roch and me. In February, Roch was invited by the MND association to give evidence before an All Party Committee of the House of Commons, whose brief was to prepare a Report on a National Strategy and later, in March, we were invited to the publication of their Report. At the moment, there is a huge discrepancy across the country in the quality of care and services for people with MND. It really does depend on where you live and that is just wrong. If anyone reading this wants to read more about it or sign the petition, you can go to

http://www.mnd2010.org/petition

and do just that!

Somewhere over the rainbow

I'm thinking of investing in a pair of boxing gloves. Yes, really. I think it would really help to be able to punch something. Of course, I'd have to actually buy the punchbag too (in case anyone was worried about what I'd be punching). I'm finding it difficult to 'access my anger'. Oh, it's there all right...as Paul Brady would say, 'Don't come too close..'

I talked to my counsellor about crying the other day. I don't seem to be doing it enough. I feel sad all the time, I mean, it's always there - the default setting, if you like. I wondered if I should make an effort, you know, sit down and feel it, try to let it out? But we agreed that that would be false. I have to let it happen naturally. I think she was encouraged when I told her that I had cried on Saturday, watching TV. I don't know if you watch 'Over the Rainbow', the search for a West End 'Dorothy'? Now admittedly there's a lot there to cry over - Graham Norton's wardrobe, Andrew Lloyd Webber's facial expressions...however these left me unmoved. But as I watched young Jenny ascend to the heavens on her sickle moon, singing her heart out - 'Somewhere Over the Rainbow' - her West End dream shattered, well, I cried. I mean, those lyrics - 'Birds fly over the rainbow, why then oh why can't I?'

I think we all know I wasn't crying for Jenny.

Anyway, it's a good thing to cry, and I shouldn't stop myself. I admit that on that occasion, I did stop myself. I mean, how embarrassing was that? But next time, I will sob unashamedly.

I will diminish and go into the West

Today Roch told me about the person he misses the most. Himself. He misses the Roch who was strong, who could 'do' things, who could walk fast, the Roch who could run. The Roch with strength in his hands.

He quoted a line from 'The Lord of the Rings',
"I will diminish, and go into the West..."
Galadriel says this after she resists the ring of power.

Your strength is diminishing, yes, I said, but remember the rest of that line.

"I will diminish, and go into the West...and remain Galadriel."

Roch will remain Roch, the essence of Roch will remain unchanged. He will be the same person and yes, he will diminish, his physical powers will leave him but nothing can ever diminish the essence of Roch.