Hey!

It is wet and cold here today. More often than not lately I've been more "down" than "up" not sure why, there hasn't been any change for the worse in my condition. Maybe I've got too much time on my hands to think about things or maybe its just "the weather" I don't know???
The kids are coming and going (as they do), Erin is off to work every day, gets home asks me how my day went and I say, "OK" (as I do). She tells me I couldn't lie to save myself......actually she's always told me that. I'm just not sure how to describe how I feel......not sick, not in pain, just feeling bluhhhhhh......you know what I mean.....how do you describe bluhhhhhhh?????
I am looking forward to the weekend tho, gonna go watch our 3 oldest boys playing rugby and spend the day down at the club, maybe thats whats wrong with me haven't been able to get out to watch them for the past couple of weeks because of the weather and they've been playing out of town. I don't like going too far from home really because I'm a bit wary about access to toilets and things like that at other clubs. At our club there is easy access for me to the toilet and plenty of mates to help if I need them to.

Erin had an uneventful journey up to Auckland on Tuesday to pick her mum up off the plane. She took Patrick and Gary with her for a ride, left Pakura with me and our baby who wanted to go to her holiday programme. Anyway, she leaves some money with me to send Pakura for fish and chips for our dinner (mums plane gets to Auckland at 3.15pm), she gets home around 6.30pmish, house is in a mess, I'm cooking some dinner for me and my baby......to her credit she asks Pakura very nicely, why didn't you go and pick some fish n chips up for tea? He DUMBLY replies, coz I want to go to the movies with my mates and I can't find my cashflow card......so I was gonna use this money.......because I didn't know if you'd be back before I go to the pictures OH BOY, WRONG PAKURA REALLY WRONG.....

One look at his mothers face put an end to any ideas he had about going to the movies, he even had the grace to look guilty, then I unceremoniously get kicked out of the kitchen Pakura gets shoved out the door to "pick up some fish n chips" and while he's gone the house gets a quick vacuum, dishes done, clothes folded 1/2 hour later we're sittin down with our fish n chips......
Bloody kid wouldn't listen to me, his mother didn't even talk to him and he knew what he had to do. Hate it when that happens.....lol.
Actually I've been laughing while I've been telling that story, I feel better already.
Thanks for listening.
Bill

Feeling Better!

Hi all,


I am feeling a lot better than I was for my last post. Although I am still not where I was before I caught that cold. Again, the freezing cold is a huge issue for me. I guess because of my inactivity I can't keep warm, at the moment I spend my days rapped in a blanket sitting on my chair with the sky remote in hand but it is school holidays so I can't get near that darn remote at the moment.
Motivating myself to do more than just sit here is just a wee bit difficult right now, but I realize that I've got to keep myself moving.
Received my new electric wheelchair on Monday.....woooohoooo thats a blast. Certainly got me going places I haven't been in a while, like my garage for example......what a mess that is. Even went for a trial run down the road, certainly makes life alot easier. Only problem is, that without the proper vehicle I can only use it around home, but thats ok, the manual wheelchair and/or the walking frame will be ok for when we go out and about and I can always call a mobility taxi if I really need to go anywhere.
Went for a drive to Auckland (about 2hrs - 2 half hrs one way) on Monday to drop my mother in-law off at the airport. She flew over to Aussie to visit my brother in-law and his family. Sitting in the car for that long was a bit uncomfortable I have to say, but went to keep my wife company, she drove back from Auckland. I think she will have to take one of the boys with her when she goes to pick her mum up off the plane next week, don't think I can face another trip just now.
Have decided for the time being to eat what I want, when I want. You know how it is, they tell you to change your diet for the better, and all that healthy living stuff, but truth is while it may work for other people, I''m a "meat and spuds" kinda guy, always have been and while I don't begrudge other people doing what they think is best for themselves and their body, putting food I like to eat in my stomach is really important to me right now....there may come a day in the not too distant future when I'll be fed through a peg and until then mates, I have decided to eat what I want to eat.
Woke up yesterday with one heck of a sore throat, thought it might be the onset of yet another bout of the flu. But there was no cough or runny nose. Erin made a hot lemon drink to see if that would ease it and sure enough it did. That was a relief, but this morning she gets up and asks me how my throat is today, it was ok, so she's starting to take notes about when things happen no matter how trivial they may seem, but we've learnt that there is nothing trivial about "small" things anymore.
Anyway, I'm ok for now, family is muddling on through and roll on school........love my kids but dang these school holidays are hard....don't know how my wife did it all these years while I went to work and she was at home.

A week to forget!

This has been the week from hell!


They told me, to avoid contact with people with colds, but thats pretty difficult when you have kids "c'mon you gotta get real" I'm thinking to myself!


Now I know what they were talking about. Erin and I sat our kids down ages ago and explained to them why they needed to "stay away" from me if they got a cold and/or flu and all those good things.....At the time of that conversation neither of us fully understood really what it would mean if I got a cold. Now we know.

Because my stomach muscles are pretty non-existent now I can't cough! I'm going through the motions but I can't cough everything I need to up/out if you know what I mean. Its the worst feeling to be all "clogged up". I can't keep any food down, and thats making things worse. As a result I'm getting very little sleep.....bi-pap is working overtime but seems to ease things a little when I'm in bed. I've been feeling like crap basically.

Erin has tried everything to make me more comfortable, keeping warm is an issue right now, I can't seem to stay warm. Hot water bottles where I ache help heaps, but lack of real food is making me weak so I'm on my wheelchair most of the day at the moment.

Not liking this feeling one little bit. Only thing thats keeping me going is that I'm feeling better today than I was yesterday, and better yesterday than the day before so something is improving, just need to stay focused on things day by day.

Will check in once I'm feeling better. Hopefully that will be sooner rather than later.

Bill

Melt Down

Frustration - grrrrrrr
My family has learnt to recognise the signs - keep out of dads way he's in a foul mood.
Our whole household has been so tense that something had to blow, and it did on Saturday and nobody saw it coming.

A typical Saturday in our house has been the same for as long as I can remember during rugby season.
Get up, have breakfast, clean up the house get little ones ready for Sat morning sports.
Straight from kids rugby to my rugby, day starts around 9am and finishes when we get home from rugby usually around 6.30-7pm. (After I finished playing rugby I became a member of the Senior team management). You know the deal, all the kids playing at different venues, you trying to be super heroes and being at all the games. Difference is, now the kids argue back.....and my wife is the only one who drives to get them all where they need to be when they need to be there. (I haven't driven for almost 6 months now, 17 year old has a restricted license but his mother has banned him from driving for a while because he's racked up a whole lot of speeding fines) So, when she had an argument with one of our boys (he's 15) and shut herself in the room and refused to take anybody anywhere nobody knew what to do. To the rescue comes oldest son (who is flatting), has a few choice words to say to 15 and 17 year old brothers tells them to wait in his car and then in to his mother to make sure she's ok....5 minutes and another choice few words later both 15 year old and 17 year old trudge in to their mother to apologize and then heads hanging down, back to their big brothers car and he delivered them both to catch their bus to their game before he caught his own bus to his game. Last year we would have been on the buses with them, this year to make things easier for me Erin has been driving me and the 2 little kids to the games where ever they are.

Its amazing how little ones sense things aye....our 10 year old and 7 year old were perfectly anjelic during this whole episode our baby asked her mother, how come we aren't going to rugby today mum and mum just said because I'm tired and she said well shall we just stay home and go get us some videos mum and so we stayed home on Saturday.......

Saturday night oldest son arrives home gets off bus comes and picks his baby brother and sister up and takes them to stay with him for the night. 15 and 17 year old ring when their bus gets in to ask if they can stay at mates place, good grief we're at home by ourselves. Now what?

Well, the big pot Erin cooked for everyones tea was put in the fridge for Sunday and her and I had toasted sandwhiches while we watched the test match......but I had to sit through the bloody netball before that, in all the years my wife played netball I think I only ever went to watch her play once, I'll tell you this though, I wasn't going to complain, well, not out loud anyway!

The moral to this story is, everyone was so busy looking after me, that we forgot about the person who looks after me AND EVERYONE ELSE. She had just had enough. Now she's feeling guilty about her little "melt down" she calls it. I think it was a wake up call for all of us. Things have got alot better in our house since then. We know it probably won't last long but we all took a long hard look at ourselves, the 15 and 17 year olds realize they need to help their mother out more, I realized that I'm not the only one that gets tired and frustrated and Erin has relaxed her ban on the use of the car by our 17 year old so that he can at least drive himself and/or his brother to work and rugby trainings rather than her taking them and picking them up.

I said in my very first post that I wasn't much for talking, but I need to tell my wife how much we all appreciate everything she does. Luv u hun.....

PS: Also want to thank our big son he's such a great help to us all and he's such a good kid he doesn't have to do what he does, and we don't expect him to but he just does what he does....

Update

Hi everyone. It has been a while but for the most part things have not changed in any major way in my world. Yesterday May 20th we had our first family conference with our "team" of professionals, Krystal our OT, Fiona our Speech therapist, Lyn our Physio just to bring everyone up to date and make sure we were all on "the same page". They are a great team of people and it is wonderful to know that they are there for us any time any place anywhere......

Received my power chair (electric Lay z Boy) today......kids are having a great time on it....lol. Have a trial wheelchair (manual) which thankfully I don't have to use too much at this stage because I am still able to walk with my frame, I tend to use the chair more in the afternoons. (I start getting just abit tired around lunch time). My wife decided to take me for a walk the other day (I should say, she pushed the chair) WRONG........ that was a steep learning curb........she stands around 5'4 and I'm 5'11 she found it difficult...really difficult getting me and the chair up & over even the slightest little bump when crossing the roads etc.....so she's decided she needs some "wheelchair driving courses" those were her words not mine......before we attempt that again. Some pretty colourful language was coming from directly behind me that day.....we got home and looked at each other and "cracked up" laughing..........our kids thought we'd gone crazy.

On a more serious note, make sure you check your chairs etc before you use them, especially when you have kids at home. The other day one of my boys was sitting on my wheelchair (he's 17) and yes he was doing wheelies in it. On these new wheel chairs they have bars at the back that you use to stop the chair up-ending when you are coming up over your doorstep for example. He turned them up the other way and when I sat on it I got outside ok, then when I came back inside I was coming up over the little lip on the door and.....CRASH.....over I went, hit my head on the deck.....just as well he was still home when that happened. This type of thing is preventable with a bit of common sense and vigilance and a little help from teenage kids.....

I am using a bi-pap machine every night and have been doing so for almost 6 months now. It has helped me sleep and is working really well for me. Krystal (OT) has ordered a powered wheelchair for me, but that will take a while. She tells me it is a lengthy process, they test it and test it until they have exactly what you specifically require, and I think thats great. I also have an electric hospital bed, again the kids loved it when it first got here, now it is literally just part of the furniture! My eating is really good, I can still eat everything and do eat everything. No issues at all there. Arms, hands and other leg are progressively getting weaker, but very very slowly.

I'm still on the sideline at the rugby every Saturday, but not running the water on OBVIOUSLY...although my mates give me a ribbing....they say they can rig my walking frame or wheelchair with a bottle carrier and want me to give them my doctors clearance because I've been "missing in action" at the working bee's etc.......They keep me grounded and sane, other than your family, you need good friends to help you through the rough patches and I have some awesome mates.

Thanks to everyone who has left messages in my guestbook. I will get back to you all once I figure out how to use it. That could take a while.

Until my next posting, take care everyone.

Bill

Worried for my Wife

Last week my wife went to hospital to have her thyroids removed. It was supposed to be a no fuss thing, you know, in and out.....what happened she ends up in Intensive Care for 2 days and scares the heck out of us all.....didn't need that on top of everything else. But she is okay now and home and back to doing everything for all of us again.

Thats all, just had to get that off my chest....oh and by the way our shower and ramps are finished.

Chainsaws and Hammers

They started work on my wetshower and ramp yesterday so all things going to plan everything should be finished by Friday. I've got to say a huge thank you to Enable New Zealand for funding these for me and for everyone else out there who requires this type of assistance.

I'm good, nothing changed since my last post. Just wanted to brag about my new shower and ramp.

Bill