the world is just a turn of a wheel away

It's amazing what you forget.

I've been trying to do some web development for a project Rosie has an idea for but I'm struggling to remember how to do some stuff. It's been almost 1 year since I've actually sat and done some serious work using mysql/php etc. and I'm shocked at how much has left my brain.

When I worked I was an unix expert, to such an extent that I used to run courses to help other people get the hang of the operating system. But now it's like I've never used the thing. Don't get me wrong after an hour or so it's all coming back but jings it took a few looks at the manual pages. I've even had to resort to digging out some books to help, glad I kept them now.

So now it's a case of remembering how it all goes together, what each system needs to get to work properly both on it's own and with the rest of the systems.

It's getting there but I think I need to keep my hand in more than I've been doing lately.

Rosie has decided to try and set up her own business, and while I can see how it might work I'm not convinced we can afford it and to be fair I'm not convinced we'll ever be able to afford it.

But that's not the problem. I can see why she's planning things, looking at the costs involved, doing all the things that have to be done etc. but she's not discussing things with me. Normally I'm not that bothered to be honest. I like to be left alone most of the time and I'm quite happy being on the sidelines of things, only getting involved when asked or if I think I need to say something.

Now this might be from laziness or from the belief that people should be given a change to do things and see what happens. I do this with the kids up to a point and to be honest I'm kinda doing it with Rosie and this business idea.

Now, with all types of business there are setup costs, and general running costs. The set up costs aren't going to be cheap by any stretch of the imagination. Premises have to be hired, kitted out, a van bought, insurances arranged and all this before she's really got any customers and with the present economic climate no guarantee of getting any either.

I simply don't see how we can afford all this. Although this isn't the worse thing. It's the fact she's not discussing it with me and going ahead with things that I'm only vaguely aware of.

I can see us falling out about this soon, and it's not going to be pretty.

I fell this morning.

It was first thing in the morning, I had just got out of bed and was in the process of transferring from a wheelchair onto the toilet to get dressed.

I have a pretty much fixed routine most days and this is something I've done 1000s of times in the past, but this time I got it wrong, boy did I get it wrong.

Part of transferring means moving to the side of the chair, then placing my arm on the toilet seat then sliding over. The important thing to make sure is that my arm is straight as I don't have the strength to move with it bent. Unfortunately this morning for some reason it wasn't straight.

This meant I ended up in a heap sprawled over the toilet, with most of my weight on the wheelchair. But, not in a comfortable way but with most of my weight on the edge next to the metal part of the seat.

So my left arm is over the toilet seat, my right arm is holding onto the handrail. My chest is against the toilet seat with my legs spread out underneath me. Let's jjust say it wasn't the most comfortable position to be in and something I'm not in a hurry to do again.

The next problem was how was I going to get up from here. Thankfully Rosie was with me but really the only way to get down is to slide down onto the floor. This meant moving the wheelchair, but people who are paying attention will remember that my weight is on that chair so moving it is going to hurt.

After much swearing, pulling and general pain I ended up sitting on the floor. Legs spread wide, and slightly straight. Not too bad a position to end up in but it really hurt to get there. With my legs not being able to straighten anymore the pain in my knee was considerable, to the point that I thought it was going to explode. Sounds dramatic but honestly that why it felt like.

We wrapped the hoist round me, lifted me up and placed me on the toilet so I could recover and get dressed.

The damage left is a sore left thigh, pains in the left hand side of my chest, pains in my right knee and finally I've done something to my collar bone on my right shoulder although I have no idea how.

So basically not the best start to the day.

If you were the webmaster for more than 1 website connected on the subject of fshmd would you be impartial in the updating and promotion of those sites?

I think if the person didn't own either one and was quite happy with it then it wouldn't be a problem.

Unfortunately I was approached to do this for another fsh website who wanted a total redevelopment. While I think everything would have been ok I'm sure there would be some cases where a conflict of interest would happen, and in these cases fshers.co.uk would always win.

Maybe it's best to withdraw the offer to update their site for them.

Not sure what the weather is doing where you all live but here in Scotland it's been pissing down for the past few weeks. I reckon that for the past 2 weeks there hasn't been a day where it's not rained at some point.

The weekend we were away at Rosie's parents it rained all day on the Saturday, which is bad enough but back in Scotland that weekend there were serious floods where walls collapsed and huge areas of towns were damaged by the amount of water.

On the local news the other night it was highlighted that the seasonal average rainfall for August fell by the 10th on the month which when you consider that fact is quite incredible.

Of course this effects so many areas. People seem to be grumpier, the garden can't be touched so the weeds have sprouted again, the ground is sodden,, the leaks in our garage seem to be worse although I can't understand that one.

So far today it's been ok here, but the forecast for the night and the weekend is rain :(

Anyone got an umbrella I can borrow?

I play poker a lot, online and in real life with friends. I do ok, nothing fancy but it pays itself mostly.

It's generally said that luck evens itself out over a period of time, in that case I'm due some serious luck soon. Today had been one of those days when everything I tried went wrong.

The worse hand was this one :

Playing 10c/20c blinds.

I'm dealt Jh Qs.

This is a good starting hand which is definately going to be played, unless someone does something strange or stupid preflop, like go all in for a lot of chips or make a huge raise.

I raise 4x the big blind, so I put in 80c.

This is to get rid of the crap hands, and sometimes it's even enough to scare everyone away to get the blinds.

Everyone folds except 2 players, the guy next to me and the big blind. Not a problem there are a lot of hand that can help me on the flop so this is ok.

The flop comes down 10c kd 9c.

I've hit a straight and because there is no suited action no one can have a possible flush. My hand isn't quite the nuts but it's pretty close at this stage.

I raise $2 and get called by the guy next to me, but the guy on the big blind goes all in. There's not much he can have that can beat me, in fact I can't see much so I put him on a big pair or maybe a straight as well, but I have the inside straight so at this stage he can't beat me so I call him but this puts me all in but again I have a good hand so that's ok.

The other guy also calls him so the pot goes to around $23.

Since two of us are all in the cards get turned over. Only the guy next to me had chips left.

So the other cards are :

guy next to me : ks 8s
big blind guy : Ac As

I'm ahead, but there are hands that could possible beat me.

Turn 9h

Ok, that is a bit of a scary card because it puts two 9 on the table but he would have to hit another 9 or one of the 3 jacks to get anywhere, and the chances of that are huge.

So again at this stage I'm doing ok, the guy had only 5 cards that can beat me in a deck of 52 where 20 were dealt originally (2 cards per 10 players) and 4 are on the table for the community cards. So he has 28 cards to pick from where oy 5 can help him.

The math to win is :

me : 85.71%
AA : 9.52%
K8 : 4.76%

So I'm a huge favourite to win, the only cards I'm worried about are a 9 or a J. And guess what happened?

Yup, he hit a 9!!!!

I ended up losing to two full houses, but one guy had nines full of kings, but he was beat by someone having a better full house with nines full of aces.

I'm due some serious luck!!!!

One of my oldest and closest friends passed away at the weekend. He was diagnosed with a brain tumour around xmas time and unfortunatly there was nothing they could do for him.

When I worked he was one of the main people who helped me. Whether it was getting out the car, doing some shopping at lunch time, or almost anything I knew I could rely on John to help me.

Apart from the help he gave me he was also one of the nicest people you could ever meet.

I'll miss you mate, R.I.P.

What a farce this years Tour De France is.

Three riders have been caught with a new version of the drug EPO in their system. They had assumed that this version was undetectable and they would get away with it, of course the drug checkers knew this and thankfully caught them.

It's almost got to the point now that if a rider does something special on any stage then people are going to be pointing the finger at them for taking some sort of performance enhancing drug, whether they have or not. But as recent events show it seems fair to question there performance.

Mark Cavendish has been brilliant so far winning 4 stages up to now, hopefully this won't mess up his Olympic Games where he is in the British Team. He's now at the point in the race where the mountains are ahead and he's not the best in them so it is worth the wasted energy just to get to Paris and say he's completed the tour? Some years this would be understandable but this year he has to look at the bigger picture of the Olympics and how he has to perform for his fellow team mates. Of course it's important to mention that Mark is completely clean and his team even go to the lengths of having an independent tester who publishes the results on the teams' website.

It's a shame but as long as the drug users have ways of improving their performance, and can stay one step ahead of the authorities then this is always going to happen.

Makes you wonder how long the tour can continue with these problems because most people don't see them going away unfortunately.

Is it wrong to want to hurt some little dipstick who has managed to upset my oldest daughter?

One of her best 'friends' has managed to make her cry, then follow it up by sending her threatending messages on her phone.

Not sure what he would have done if she had answered her phone mind, but the messages he left weren't very nice.

I have a team of people who keep an eye on my health. They range from district nurses who appear every now and then to make sure my blood pressure is ok and try to give me my flu jab (which I never have) to the nurses from the Western General Hospital in Edinburgh who look after my health regarding my breathing and ventilation.

Normally I get on ok with them all, the district nurses I don't tend to see very much so I don't have the chance to setup friendships with them but the people in Edinburgh have been very close to Rosie and I since I became ill in 2002.

This relationship with the nurses from Edinburgh seems to have changed lately. At the end of last year there were some issues with my new ventilator, we couldn't get it working the way I liked it, and eventually they took it from me and left me with my older one.

We haven't spoken to them since last December, a whole 6 months past. This was partly my fault, partly because of them.

But now I need the help that only they can provide due to issues with my ventilator

So tonight I'm trying another new ventilator, hopefully this will work better and I'll sleep ok.

In the uk tomorrow it's Father's Day. This is a day where I have a big problem.

I'm never sure whether to be sad or happy.

Sad (trust me to start with the sad - consistent if nothing else)

My father passed away on 17th May 2000 and while people say that time is a great healer I don't think one ever gets over the loss of a parent in a sudden and totally unexpected way.

He suffered a stroke the evening before and died the next morning. We never had time to say bye to him as he never regained consciousness. I was much closer to my father than I ever am or will ever be to my mother. My father also had FSH MD and that gave us a link that was unbreakable.

Happy

Now I'm the father to two girls I get a bit spoiled on Father's day. I had never planned to have kids due to my FSH but these are from Rosie's first marriage and now they see as their father. So tomorrow it's cake at some point and gifts I think, maybe even going out for a meal somewhere nice (I'd like to go to Nandos, a local Portuguese restaurant that specialises in chicken dishes)

So a mixed day tomorrow.

It was always my intention to update this blog regularly but as usual with things like this I haven't managed to do it.

It's not that I don't have things to talk about, although my life now isn't the most exciting in the world it has its moments. For example I could talk about :

Poker - I spend a huge amount of time thinking/playing/reading/writing etc about this subject
family - lots going on here. Things happening with the kids, immediate and extended family.
Health - ok this isn't the cheeriest subject to discuss but still some interesting things happening although most of it not the best news sometimes
Internet Stuff - I do spend a lot of time on the net surfing various sites and having lot of ideas
Writing - I'm trying to write more stuff, ranging from Poker to stories to general comments about life and what's going on.
Sport - This I could talk about for days and never run of things to ramble about. Subject could be anything from F1 to football to rugby to snooker to almost anything else. Basically I have an opinion on most sports.

There are lots more but this will do just now.

Maybe I need to make a concerted effort to add posts more often. But like most things with me it seems a good idea at the time but ultimately I know I won't do it, but we'll see I just might surprise people

No not the planet but the confectionary company.

Read this article and decide if you're going to continue to eat their products.

http://www.foodnavigator-usa.com/news/ng.asp?n=82017-mars-peta-animal-testing

I have a serious habit of eating M&Ms, I'm currently on 2 large packs a week.

But after reading that article I won't be eating anymore until they stop testing chocolate on animals.

The only time I think testing should be allowed is when the work is done to find a cure to some disease, such as MD or other killer diseases. Definately not for chocolate.

This is the google search page if you want to read more :

http://www.google.com/search?client=safari&rls=en&q=mars%20testing%20chocolate%20on%20animals&ie=UTF-8&oe=UTF-8

One thing about FSH and Muscular Dystrophy in general is that the deterioration isn't really noticeable. It's not like one day you can do things then the next day you can't. On no that would be far too simple and easy. With this condition it's a slow change that over a period of say 6 months I can look back and say 'oh yeah that used to be easy but now it's a struggle'. Eventually that struggle will end up with me needing more help to do that thing, then eventually I won't be able to do it at all. But it's a slow thing, not quick at all.

I also think there are days when I just feel like rubbish, like my body is saying 'well you've had a good few months, now it's time to show who's boss, and believe me buddy it ain't you'.

Today is one of those days.

My back hurts, I've got a cold brewing I think, my breathing is terrible just now to the point that I'm actually using my ventilator to top it up during the day which is something I never do, my hands are sore, I've done something to my right elbow that hurts when I straighten it - which I do frequently unfortunately and my stomach isn't feeling great either.

So all in all I feel a bit rubbish and because of this I can't really be bothered with anyone or anything. I have things to do today but I know it's not going to happen when I feel like this. When I talk to people, either on line or off I'm going to be polite, cause I always am, but I'm not going to be any fun.

Another thing about having one of these rubbish days is I always thought that once these problems go I won't be as strong as last week. I won't really notice it but I'll just not feel as strong or as comfortable doing things.

So all in all not a good day, maybe I should just go back to bed and let the world get on with things without me, pretty sure I'd not be missed by anyone.

Been trying this new ventilator for a while now but there is a number of problems with it.

The main ones should be how the breath is delivered but suprisingly enough it's not. It's the alarms that are built into the ventilator that are the big problem.

My old ventilator only has 1 main alarm, and that's when the hose becomes disconnected from my mask. But the new one has loads of them with the main ones being Low Tidal Flow and Low Pressure. The main way these things happen are when the mask has become loose on the patient face, for example when the patient moves during the night and the mask 'slips' and works loose.

The Low Tidal Flow happens when the patient doesn't get enough air pushed into their lungs, and therefore aren't being ventilated correctly, for obvious reasons this is bad for the patient.

Anyway the long and the short of this is that I can't use this new ventilator anymore. Because it alarms it wakes me up therefore giving me a change to move and clear the alarm. In theory this is a good thing, but only if I get woken up once or twice a night, anymore than that and it's not actually doing me any favours because part of being ventilated is being able to sleep.

So the alternative to using the new machine is going back to my old ventilator. Now this shouldn't be an issue I've been using it for 5 years, and in that time it's basically kept me alive so it shouldn't be an issue. But there is and this is the main problem I have.

My condition means that my breathing is basically shit and I have good days and some bad ones. Lately the bad ones have been more frequent and I always put this down to my condition getting worse.

Using the new ventilator made me feel so much better, but of course now I can't use it. Last Wednesday I felt breathless most of the day, on that night I used the new ventilator and felt so much better, as I have every other night since. Now it might just be a conscidence but I think this new ventilator helped me, but now I'm not going to be using it anymore.

To say I'm not happy and a little worried is a slight understatement.

Well this is the new ventilator and so far its not easy to use at all. The settings seem all wrong - the breath supplied just doesn't seem right, the timings wrong, the way the breath is delivered, etc.

Anyway this is the new ventilator :

http://www.breas.se/breas_templates/Page____53.aspx

looks like I'm going to have to change my ventilator :(

For those of you who don't know I sleep connected to a ventilator due to a problem with my breathing. Basically it when I lie down I stay conscious for about 1 minute then start to have problems which if untended to will result in me dying. Cheery isn't it.

Anyway, the hospital have been checking my oxygen levels lately and have decided that my current ventilator is just not up to the job anymore. It's right at the top end of its blowing capabilities and as it seems I need some more air during the night its going to have to be replaced.

At the moment this isn't a problem, I have been feeling a little breathless during the day but this happens quite often and has for a while so I'm not bothered but obviously the docs are a little worried so tomorrow I get a new ventilator.

I'll let you know what happens.

I had a horrible evening last night.

We were all due to go see my youngest daughter taken part in a play at her school. It was an end of term thing for the primary 7 kids but some primary 3 children were asked to take part. She was one of these primary 3 children.

Unfortunately on the way to getting in the car my stomach became upset so I had to rush to the toilet. My two kids walked to school while Rosie helped me. Unfortunately we had so little time I had to stay on the loo while everyone else went to the show.

They left at 6:30pm, and would return at 10pm. So because I need help to get off the toilet I would have had to stay there till they returned.

I had the house phone with me so after 1 hour, and my legs were getting sore by this time, I phoned my sister who came down with her husband to help me. But even then they didn't come down till 8pm.

Then I had to explain how I needed his help, where to pull me, how to move the chair and stuff like that.

It's made me realise how much I rely on people to help me and for some reason this has really bothered me. Rosie helps me all the time and thats ok, I don't have any problem with that but someone else helping me has bothered me.

Not a happy bunny at the moment because of this.

Just to let you all know I'm still alive.

The normal stuff is going on, not much changes here.

Another one of the forums I'm on is called FSH-United. Its for people with FSH Muscular Dystrophy. It's not one I've been using for a while but i've had a few conversations with the people on there.

Because they have FSH, they're symptoms are much closer to my own so we have some things in common.

One guy on there, Alex, has symptoms very close to my own, except for his weight that is.

Unfortunately Alex passed away on Wednesday due to breathing complications. Although I didn't know the guy very well it has really shocked me. Because his symptoms are close to my own its made me really think about my own life.

My thoughts are with his family at this time.