So whats been happening

Well this may piss the wife off but I'm still alive after a shocking few week. First off i spent a week in hospice trying to manage the pain in my hands but i had a rather nasty reaction to ketamine hariperidol (prob spelt wrong) my jaw locked on my tongue twice! it felt like i was biting through it, its now happened a few times and my tongue feels battered so i gave up and come home. I do have to say the hospice is a fantastic place and the staff are amazing. 

I came home on Sunday but didn't feel rite all week. On Friday night an ambulance was called.i was taken to whiston and quickly found out i had pneumonia. I am finally home after the most traumatic and frighting time of my life, i really thought that was it, the minute i heard pneumonia my heart sunk and i thought if i went sleep i wouldn't wake up. My mum, dad and Rachael never left my side, thanks everyone for heir messages and those who took the time to vist, i really appreciate it, also a massive thank you to Jess Bailey for helping Racheal with the kids allowing her to stay with me, between my mum ,dad, our Lisa, Rachael, aunty Pam, Danny and bris i the best people i could possibly ask for, even our Danny offered to drive up from down south to help Rachael with her kids, so proud and lucky to have these people around me.Hopefully stay out of hosi for a while now.
Now i can get back to devorcing the evil one who continues to ignore everything and still will not return items of mine and Hollies, its difficult to explain to a nine year old why she cant have her things, at least were all set for going to court now  and her and her evil new bf can carry on with their sad lives! oh and the evil parents who witnessed what she did. At least i know who to haunt when i die.

Pain

Currently in Willowbrook Hospice to try control the pain, now were not talking of pain that is like a head ache or a sharp pain, its my hands mainly, the only way i can explain it is like a tingling or pins and needles but 10 times more annoying. This has been going on for months, i cant bare my fingers or my hands touching anything, your probably thinking soft arse but believe me its not nice, for me to come here says how bad its got, plus the hip pain that has started recently. I would love someone to experience what its like for a day. Yes i know, stop moaning lol!
On the flip side the Hospice is a fantastic place and all the staff are very nice. I do feel comfortable here compared to Aintree Hospital which does make a big difference to being away from The Kop (my bungalow).
I have decided my next lot of money i raise is coming here so come on buy a wristband. I will have a think of my next fund raising idea.

Oh yea

Talking of being fleeced, i feel very let down by rsl steeper, once you have spent your life savings on an eyegaze you just have to get on with it. I sent an email over two weeks ago and still had no reply, its disheartening to be honest. Not to blow my own trumpet but i am pretty good with computers and what i asked for is not a major operation, mainly add more memory. I don't think the support is good at all, people that have these devices rely so much on them, me included, its all i have that makes me feel normal, people would have no idea when chatting online. Anyway i took matters into my own hands! A high spec PC that i remote operate to do all time consuming jobs and then keep this free to do my tinternetting.

So much for not having much to say lol

Update

Not a great deal to say really. I know the sudden urgency on ITS part to get a divorce is down to needing sell or rent the house with the what i would class as the stolen 6 grand of fund raising money in it, not to mention the stolen 4 grand loaned off a family member and the stolen items of mine and Hollies, oh and the ticket money of my sister that has never been returned, ITS family and company  must be so proud! And before the police come again, these are FACTS! and also not defamation of character.

Its been a bit of a bummer that some wristbands are losing the writing, we did complain but it fell on deaf ears so i apologise if this has happened to yours.
My wish to watch my team (Liverpool in case you didn't know) with my dad has been re arranged for this Saturday, yes i know the mancs beat  us but were a young team and it will come, mancs are getting old! ;-)

A note

To whoever is leaving rather sad comments, your obviously very tough hiding behind a pc leaving comments! if have something to say come say it to my face, probably related to the devil woman and her all mouth crew lol.
Anyway enough about dog shit, ive got better things do.

Eyegaze

Not many people will understand and i dont expect them to but its not as simple as you may think to do even the simplist of tasks are tough when you have no fingers that work. Its such a massive part of my  life now because its the only way to have a tiny bit of a normal life and also the only thing left thats private. Its my phone, but its a bit dodgey with the signal in here and sometimes wont work. I know i need to use it more for talking but its admitting defeat and im a stubburn arse at the best of times. I can see clearly when someone doesnt understand what ive said, i would rather people say they didnt understand than pretend they did and i will type it out.
I dont think i will ever get used to not being able to talk or eat, it really does get to me, everywhere you look theirs food shoved in your face, i can have bits like soup which is better than nothing but i could murder a steak n chips from a pub, washed down with a few pints! not gonna happen! Its a good job life expectancy is short, as ive said this isnt living.

Wheelchair

The difference with this new chair is massive, so much more comfortable and great around the bungalow, hopefully not take any more chunks out of the wall or door frames. Added a little note to it

Thought it was quite funny.
Also another thing i got for Christmas that i love is my wall plaque

Its fab, i love it.
I have ordered a number plate too which should come tomorrow.

I'm hoping get my camera set up soon so i can do a little video. Those that know me will be aware of how much i love computers and love tweaking, well i am finally getting this eyegaze close to how i want it ;-) which has took some messing! i now have windows 8 running pretty well, a 3TB hard drive connected via usb and also another  3TB Network hard drive too ;-) a man can never have too much hard drive space. All i need is to find out if i can get my usb ports upgraded and the memory, i will be happy then, i think.

A New year, same shit.

Christmas day  was great day considering the food issue, it was extreamly tough and it did get the better of me at one point but soon got over it and just kept thinking, at least im with people who care. 
Unfortunately its been quite shit since, ive been in quite a lot of pain and in turn it affected my sleep. I dont want to go into detail but i think its sorted now.
Learnt quite a lot this last week or so about people, life and what i should do in the future, one thing that i will be doing is keeping out of everything that adds stress and the first thing is i have removed facebook, im sick of seeing woe is me feeble moans, i know we all have moans and may well mean a lot but im just sick of seeing them, plus seeing what im missing out on. 
The only thing look forward to was the wheelchair which did arrive today, not red, no arm supports and  i dont have full control, pretty much new somert wouldnt be right. Anyway its still miles better than other one.
To bring me back down to my dog shit existance i get a call from trial clinic telling me stop taking Dexi because it does nowt! the trials been stopped, i know we all say from time to time we have no luck but fuck me i must be up there with the unluckiest. One positive is its less time living in hell!

Whats next????

Pre Christmas update

Where do i start, my stay in hospital lasted 3 days and felt like a week! on the flip side it was all positive news, they confirmed my oxegen levels were great and as good as anyones ;-) and only come home with this airbag cough assist thing. I came home after tea last thursday in time for my wish off HoneyRose foundation to go Anfield with my dad.

 Well id love to know what ive done in this life to deserve the shit i have to deal with every day! Dont dare say any bull shit about god, if there was someone they would not make me go through this!
Wheelchair is goosed, now stuck in same position till it gets fixed tomorrow. Could have been ok if i had got the new in november as promised, which i think is shocking, maybe it sounds a bit childish to complain about it being a bit longer than i was first told but when sat in a wheelchair every waking hour (bare in mind this one is too big and  very uncomfortable) its a bloody big deal. This one got fixed on the sunday afternoon after a lot of complaining because again its not that important to them. 
Ive goto say St Helens wheelchair services are terrable and the worst service i have delt with, the first chair took over 6 months to arrive! All being well my new should be here on January 4th, as u can imagine im not holding my breath. I bet if i had ten grand cash it would have been ere within a week!!
I will say thankyou to the lady answering our calls and taking the brunt of it all when its not her fault, anyhow she has been so helpfull and if it wasnt for her badgering i dont think it would be here for months.

Wristbands are still selling very well, £300 has already been handed over and i have a further £350 to go in to MNDA, also the care agency that are based here leonard cheshire disability, organised a christmas party with a raffle for me to add to the wristband funds, a another £250 goes into the pot which is fantastic, thankyou all who donated prizes, helped to organised and all that came.
See photo of reciept recieved for the first £300.

Had one of them dreams other night that felt very real, all i remember was sitting down at a desk and signing my divorce papers and realising not only can i hold a pen i could write aswel! wow what a present, getting rid of the SLAG and getting use back to my limbs, unfortunatley carsberg dont do dreams but if they did they would probably be the best dreams in the world!

Back Home

Glad to be back in my fab bungalow, not that the stay in hosi was that bad but it was bloody boring! On a positive note my oxegen levels are as good as anyones so no need for the vent ;-) and they gave me a contraption to help cough. I think having my own carers staying made a big difference but my dad was run raggid picking carers up and dropping off.
While im on the subject of carers, i have a great bunch who we all get on with really well, the only bad part was losing my key worker who was great with me, the good thing is ive gained a friend. My new key worker and co key worker are doing great. 
I feel i need explain a few things about talking, the effort involved is immence and takes a great deal energy so the more i have to repeat the harder it gets, then i get upset and struggle even more which then looks like im getting angry, im not! if i am angry its with myself and the awful feeling of not being understood. I am now at the point of not wanting to talk, its not worth the distress it causes.

Great news is i go Anfield tomorrow to watch the mighty reds with my dad and Danny ;-) hopefully get a win! also sent a letter with some wristbands to try get a picture of a player with one on, you never know.