In New York

In New York

Friday, 29 October 2010

It's all go here...

We are slap bang in the middle of the Works to the house and it's bad timing but that couldn't be helped. This past week has seen the noisiest, messiest, dustiest part and here I am stuck at home recuperating after my surgery last Friday. However, I don't mean to complain because there's a lot to be thankful for. I've had Maura here all week and she has looked after us all and helped to clear and pack stuff away and been available to assist with decision making about tiles/colours etc. Whilst I've been laid up she's been the contact point between the guys on the job and me, when Roch's been unavailable. To do this she's been up early every day so I can rest up and she can be on hand when they arrive for work in the morning. A Pearl beyond price.

And then there's Tony. He is running the Job. I think I mentioned him before - Roch's cousin. We have absolute confidence in him and it is such a relief to leave this business in his very capable hands. He could not do more for us. I do not exaggerate. He anticipates almost every need and is usually on hand with a solution. He is trying to make sure this whole process is as stress free as possible, given the unavoidable levels of disruption entailed in having your kitchen ripped out and replaced with a shower room, a wall built to make a separate area for a bedroom downstairs, a completely new kitchen and boiler fitted...and that's just what they've doing so far. There are other jobs to follow, including making both front and back entrances wheelchair accessible and adjusting the floor levels - hallway through to wet room. I could go on.
But Tony's not just a decent person who totally knows his job. He's also very good company and it's a pleasure to spend time with him. So like I say, a lot to be thankful for.

I'm surprised and a bit disappointed that I am still feeling crap myself. Tired and weak and really not up to things. You know that feeling where you stand up and immediately feel you want to sit down again? Well, that's it. I'm told the procedure went very well, no complications - so that's a relief. Bit of a scary moment when they were explaining the possible risks beforehand. A pleasant female surgeon from Colombia reeled them off in an attractive, musical accent, ending each sentence with a question in her voice - "So - we could puncture your bladder? Maybe your bowel? Cause a haemorrhage?" She almost made it sound like she was offering a choice of medical errors. Of course I knew the risk was minimal but for a tiny instant fear had me picturing myself running barefoot across the car park, hospital gown flapping open behind me, making my escape...

All the surgical and nursing staff were very good to me and nothing got punctured, except possibly my pride (very difficult to maintain one's dignity in a hospital gown, I find) as James, an extremely cheery and obliging health professional, did up the ties at the back for me after the surgery and assisted me as I made my wobbly way to the toilet. Thank you James.

Through it all I am acutely aware of Roch, struggling up the stairs more, slowing down a lot I think but soldiering on as usual. He's pleased with the way The Works are going - more than pleased -delighted - but it's hard for him when I'm out of action. It's hard for me too. Of course I'm kind of used to feeling a bit weak and having to recover strength after migraines, but Roch has never had that. He's always been the strong one, physically. It's new for him to have to rest after finding that he's done too much. It's like giving in for him. Although he did remark yesterday that one of the good things about MND is that lovely moment when he's b*****ed, when he finally gets to lie down in bed. I was glad to hear this positive thought but may have spoilt the moment somewhat, as my honest response was 'Roch, there's nothing good about MND'. He kindly conceded that as an MND spouse, I was entitled to this view.

Thursday, 7 October 2010

So, where are we now?

So, where are we now? Well, Kate is off at Exeter University and Bless her, she has fallen victim to 'Fresher's 'flu' but has settled in nicely and we are so proud of her! It's a wonderful opportunity, but it will be hard for her, and not just for the usual reasons. She knows she must expect to see changes in her Dad - there will be developments between visits and the decline will continue.
As for us, after various delays beyond our control (and some, I admit, within our control - really, none of us wants the building work to happen) we are All Systems Go for Stage 1 - the new kitchen. I find I can't get very excited about it, (for shame Deirdre, who doesn't want a brand new kitchen?) Thanks to Maura for working so hard to clear space in the shed for storage. She made herself ill (!) and of course, thanks to Chris. Well, frankly without Chris's plans we would never have got this far. Enter Tony, Roch's cousin, who is going to carry out the works. The kitchen is chosen (what a palaver) and to be delivered in the next two weeks. Stage 2 is the Wet Room and you're right, Steve, the Clos-o-mat is sooo expensive.

We have been to the quarterly meeting of the local MNDA group, a gathering which I find more helpful now than before, although it's never easy. They had a guest speaker there, a speech therapist with special experience in MND. She talked to us about communication aids and also explained how speech/swallowing is affected. I think I've mentioned that Roch feels there may be a slight deterioration - his voice may be getting softer and he is conscious of a droop at the sides of his mouth. I did ask her about this, and she says that's how it starts, as the muscles weaken. However, this is not obvious to others (Tom will tell you that Dad can still raise his voice when necessary!). Also, at the dentist the other day Roch found it difficult to breathe during the examination. He had to take breaks. Lung capacity seems less. So he'll have to have this tested and we'll see how it's changed. The walking is slow but the wheelchair has not been used since Somerset. Thank God he still drives. Only one fall - and that happened playing football in the hall of our house with Tom! Don't even get me started...he didn't hurt himself, but it was a bit of a struggle to get him to his feet again.

We went to Ikea last night and as we left, clutching our plans and quotation etc., the guy closing up stared at Roch, open-mouthed. We figured it was because Roch was using his rollator. The man's curiosity was so obvious it was comical. It could have been upsetting but we ended up having a good laugh. "He didn't say it out loud, but his eyes said, 'what the f*** is wrong with that guy?" said Roch. This would be the first question - we do know there is a second question, mercifully seldom asked but we guess in the minds of many, and recently posed by an acquaintance, so - "You should have said, "I've got bloody MND awright mate? - and yeah, we do still have sex!!" was my suggested rejoinder to the question in his eyes... So now you all know and you can stop wondering. (I realise this may be 'too much information' for some of you, just forget I ever mentioned it).

As for me - well, isn't the menopause a great thing? I don't know how much of the fatigue, headaches, low moods and cotton wool head is false menopause, real menopause or just mnd wife symptoms! Does it matter? Just two weeks and the fibroid comes out. Hopefully recovery will be swift and I will start to feel much better, as the effects of the hormone injections wear off. Then we'll find out if it's the real menopause...

Last but not least I record here the very sad death of my dear Auntie Maura. Roch and Tom managed beautifully in my absence as I raced home to Ireland for the funeral in Kilkenny. It was good to spend time with family and to have a chance to be part of a very lovely farewell to a remarkable and much loved lady. R.I.P.