Hands Across The Water.

OK, so I used that caption on my Face Book page as well, but I really can't think of a more appropriate title. We have had the pleasure of the company of international guests for a very hectic 24 hours.

Not just any international guests, mind you. We had Cory & her husband Rob with us. Cory is the niece of my dear Texan friend Kathy, with whom I have corresponded in one form or another for the last 45 odd years. Cory & Rob are lovely people. Right from the first hug across the barrier at the airport, I knew we were going to get along fine. I think the only time the 3 of us stopped talking was when we finally collapsed exhausted into bed last night. We had a blast. I took them for a drive up the Kauarenga Valley & stopped for a swim at what is, in my estimation, one of the most beautiful fresh water swimming holes in New Zealand, complete with a cliff to jump off at different heights. Rob, to his credit, did launch himself from the mid range ledge. Cory & I discovered pressing engagements at the other end of the pool.

The nicest thing about it , I think, is that for just a little while, I could relax, & do something normal in good company. Sadly, Hoffman's Pool is out of the question for Jude now as it is a fairly rough track to get there. Lying back in the water brought back some lovely memories of times past when we used to go there to relax. Sadly, our time together had to end all too soon as they had reservations to fly to Queenstown to do some tramping, but they will be back for a few days at the end of their trip, so hopefully we will be able to spend some time on the water & include Jude this time, so , for now, its Haere Ra, Haere Ra & Haere Mai Haere mai.

I'm getting concerned for myself. I'm starting to find simple pleasures in life out of such mundane things as hanging out the washing & doing the odd spot of gardening. I've thought about this a fair bit & I think that the main factor is time. When you work, things like gardening & washing are chores that you rush through so that you can get on with the main business of relaxing in your leisure hours. I don't have that problem now. Our back yard is a quiet & gentle place where mostly all you hear is bird song. While I'm there, the little dog is generally busy snuffling round, either very carefully picking flowers or rosehips & eating them, hunting for God knows what in the garden, or lying down crunching a bone. Either way, its relaxing. If I'm weeding, which to tell the truth I really don't enjoy, she is right there with me investigating every clump of grass that comes out. I enjoy pruning the roses now as well. It gave me great satisfaction tonight to bring in a modest bunch of red & white roses to put in a vase for her to enjoy. I know she loves them so.

Healthwise, she has stabilised somewhat; I think the cooler weather is helping a bit. She even managed the trip to the airport & back without too many visible signs of distress, although I must admit that I did enjoy my afternoon snooze as well. She has an appointment with the neurologist tomorrow afternoon, the first in a while. I think that traumatic as it has been, she has stabilised at the next level of her illness & I guess we will both just have to get used to it. It's not easy though.....

The Nutty Gritty of it all

Its absolutely dreadful what has happened in Christchurch. It's very hard to get your head around the mortality of it all & just how ephemeral human life is. My heart does really go out to the folk in Christchurch. I will admit that I have got to the point where I prefer not to watch the news any more. It all has a depressing sameness about it all.

Anyway, with all due respects, I feel at the moment that I have enough problems on my own plate at the moment. Things are starting to get a bit scary for both of us. Jude is starting to have serious problems with her breathing & is also getting very frail. I'm having problems dealing with it. Watching the one you love most in the world fighting for breath with a look of genuine panic in her eyes because she can't express herself has to be the absolute pits when it comes to experiences. Closely followed of course by the feeling of powerlessness when you can't do anything to help her.

At the beginning of all this, I blithely assured myself that I would find the strength to cope with everything as it came to pass. but I'm finding it more & more difficult to get by each day. One of the hardest things I think is that at a time that is proving to be difficult, a dear friend & confidante has left the country. I can still talk to her on line, but it isn't the same as a sit down over a cup of coffee. On the bright side, we are anticipating the arrival of some new Friends from the states on Saturday. Also today, I made a good contact to get me out doing a few music gigs again. I have the room in the garage now to set up my gear, so all I have to do now is get motivated enough to not only do it, but also get my head in the right space to sit & practice for half an hour a day. Watch this space.

Hot nights feeling shitty

It's still far too hot. At least at night there is a vestige of cooler weather, with the faintest hint of a breeze when I walk the dog late at night. Even Fattums has condescended to come on the odd occasion, much to the little Whippy Dog's concern. Last night was dreadful. For one, the dog got it into her head that she had to sleep between my pillows. Yes she does sleep on the bed. No I'm neither apologising for it or making excuses. The worst thing about hot nights is that it makes it even harder for Jude than usual. As it is she is quite noisy at night, but I have mostly gotten used to it, but the heat makes it a lot harder than usual for her. She is finding it really difficult even though she doesnt say anything. I can tell that it's doing her hard, because she has noticeably less energy during the day. The BIPAP during the day is working well. We went to see the Respiratory Specialist on Thursday. Struck a different guy than we have had in the past with a new take on stuff. He has prescribed an asthma inhaler for her. Not because of any help with her lungs, but because it helps dry her mouth out. The irony is that she is now on 3 different drugs, all prescribed because of their side effects.

I'm living in a state of excitement & expectation at the moment. I have a dear friend in Texas who, though we have written to each other since our early teens, have never met. her niece & her husband though, are coming to New Zealand next Saturday & are coming to stay with us for a few days. Can hardly wait.

I guess I will have to clean up a bit though. I have left sweeping the courtyard as the Magnolia tree that causes 90% of the mess was supposed to be coming down last week. Not before time either. Although they are very beautiful, the only place they should be grown is out in the middle of a paddock. Not where their branches overhang the roofs & yards of 2 houses. I won't be sorry to see it go. My vege garden is amazing me. The tomatoes have now grown higher than the stakes, with some beautiful trusses of fruit forming. I have pruned all the lower foliage right back in an effort to get as much sunshine onto the fruit as I can. I'm hopeful that I will get at least some fruit off them before winter sets in. Everything else, including the weeds is growing as well. I do pick away at it it most days, so it doesn't look too bad. That is if you squint & look over your left shoulder....

Summer Nights

Can somebody please turn the thermostat down ? It's way too hot & sticky for both of us. Jude especially is having a lot of difficulty with it, needing both the fan & the evaporative cooler going all day to cope. Even with them, she is still getting a lot of phlegm on her lungs. We have tried Robitussin Chesty, but that doesn't seem to help. On another MN sufferers blog, we have found out that he uses his BIPAP for a couple of hours before bed, which helps break down the stringy bits in his chest & makes it easier for him to get rid of it, so we have tried that & yes, it works. The other thing that is helping is a nightly Amitryptelene tablet. It seems to help break down the phlegm & the soporific effect also helps her get a good nights sleep. Just remember, that if you are putting it through a PEG tube, that it needs a good half hour or more to dissolve in water. What I do is put the tablet into the syringe, half fill it with water & sit it upside down in a glass so it doesn't run out.

The garden is thriving. So are the weeds. I'm hopeful that with light showers forecast for today that it will get cool enough for me to be able to get out & start emptying out some of the pots around that only have weeds in them. My ultimate aim is to get round the shade house tidied sufficiently so that Jude can get out there in her wheelchair & potter round a bit if she wants to. There must be something wrong with me. I'm actually starting to enjoy doing a bit of gardening...

RIP, Gary Moore

Another one for the great Blues Band in the sky. We gonna miss you mate...

How does your garden grow ?

If it's anything like mine at the moment, like a damn rocket. Those of you that are actually paying attention will remember when I planted everything in my vege garden. My tomato plants are nearly a metre high already & have got fruit formed. Sage & parsley are useable & I'm having trouble keeping up with my Kos lettuces. Mind you , there is a down side to this. The weeds are growing at the same rate. A friend has given me a surefire natural spray for Oxalis, (2 tablespoons of bicarb of soda per litre of water) & it works, so I have been hanging off hoeing until the wind died enough to try it. I think the fact that the air feels like the inside of a green house at the moment probably has something to do with this.

A dear friend sent us this link Written by a gentleman who also has MND, though from the tone of his writing, he is more advanced than Jude in some respects. We have gotten some really good hints & advice from it, So its definitely worth a look. Other than that, Jude is holding her own (just) although we are both praying for a drop in temperature & humidity. Winning llotto would be nice as well.