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.

Early Christmas present

Been clinic this morning and it looks like a 3 or 4 day stay in hospital is on the cards, not that keen on the idea but if it makes this death sentence slightly more bearable then its got be worth a try. 
Gonna try have a film night tonight to take my mind off things, also Hollie is coming and putting my tree up and no doubt tell me get my movember tash shaved off.

Off to the NIV clinic tomorrow, i cant say im over the moon about it, i never relish these appointments. My hands are really giving me shit and causing a lot of pain! its like really severe pins and needles constantly nagging me, just resting them on a soft pillow doesnt help, add back, shoulders, ankles and arms to the list of pains, then the food, speaking and the mental torture of dealing this lot takes some doing. I wish i could just have break from it, fat chance of that. Also losing out on lots with Hollie, not being able to give her a hug when shes here or when shes upset breaks my heart, its one fucker of a disease! 
Not much on the positive side at the moment and i struggle to see anything changing.

Still feel like shit. Went cheshire oaks yesterday to get out but found it very hard going, obviously local councils dont take wheelchair users into their plans when re doing paths, its same here in town center, block pathing, flags and cobbles all randomly placed! my head was like a pea on a spoon and ended up very sore. Then there ignorant tossers that are oblivious to the fact your there, even try squeeze past in a doorway rather than wait a second!
A bit great news is i go watch Liverpool thanks a fantastic lady at The Honey Rose Foundation called Lynn, thank you x

Oh my divorce is still ongoing, all of a sudden the evil one seems be in a rush but i still continue to be ignored about my belonging's and also receiving idle threats over harassment, just because i want my things. I don't how they can live with the way they have treated me and my family over all this, maybe a bit different in a court room, id like to see them lie under oath. 

Whats going to happen next

I think ive hit another low point, finding pretty much everything is shit! the only time i can feel like i am having any meaningful conversation is when im here talking to a effing screen, talking but not getting a response, its a like an imaginary friend or somert. The amount of times i have something to say but dont bother is unreal or when i do try i mite aswel be speaking another language because of it being so hard to understand a bloody word, frustration kicks in which makes it worse, then the tears along with anger and by this time i am just a wreck. Everyone around me try so hard to understand, comfort and help me but sometimes i cant see a way out, what do you do? i wish i new the answer. The days are just rolling on and on, get up and sit in this shit, uncomfy chair all day then go bed, its a different world that im living in, my own world with my imaginary friend! get the men in white coats!
Next is the food issue ,now that is very annoying, i dont think you quite realise how much food is such a massive part of every day until you cant eat, its all over the tv, everyone talks about it without realising, im dying for a good meal, a good steak or a bar of chocolate! sadly its not going to happen, what a shitter it is.
If i am honest i would give up if it wasnt for my family, i take my hat off to all you guys that have been dealing with this for years, i dont no how you do it.

This isnt living.

Quick note, those of you that have bought bands through paypal, thanks very much and i will post them tomorrow.

What a difference a good nights sleep does, felt loads today and more motivated to do things instead of just sitting ere feeling sorry myself.
Got my new batch of wristbands today so i best get selling lol and im determined to get a celeb waring one.

I have added an option to buy bands direct from my website via paypal www.cvmnd.weebly.com which may help shift a few, fingers crossed.

I have added an option to buy wristbands direct from my website via paypal www.cvmnd.weebly.com

A few pictures

Still having sleep trouble, pains and eating issues, so much its pissing me off and making me lack motivation to do anything, even talking because its so mumbled.
I hope i hear something about my wheelchair, i cant wait to have one smaller.

There are no adult bands left, over 200 sold which is fantastic, i never thought they do so well and so quick, i cant thank everyone enough. A new batch are on the way and i will let you know when they arrive.
Also i would like to thank the twitter MND family for welcoming both Rachael and myself in and supporting us, twitter is new to me but i will get the hang of it eventually.

Today i feel a bit better, still not sleeping well but i guess i will just have to get used to it. 
Going trafford center in a bit for some retail therapy and hopefully wont run anyone over.

Finally happy birthday to my little sister who has been fantastic considering what she has been through, love you lots X

Been struggling this week with not sleeping well and unable to get comfy, which is doing my head in. Also whoever said you dont really get pain with MND wants to walk in my shoes for a day! my hands and arms hurt wherever i have them, it would be far better if i cut them off, they just get in way. shoulders, hips, back all hurt or ache and this is what spoils my sleep.

So Pleased

The response to the wristbands has been fantastic, so much that i had to order more. The big challenge is to get a celebrity to ware one ;-) 

For those asking how to get one, here is what to do. 

Email me at cvmnd@live.co.uk and let me know how many you want, how you want to pay, paypal, cheque, postal order or cash in hand. Please don't send cash in the post.

Onto how things are with my condition, basically i am falling to bits, people being able to understand me is hard work and takes so much effort to talk and i get so frustrated, its one of the toughest things so far. I no longer eat much because of choking so i am drip fed all through the day. 
I have struggled quite a lot lately with all that's been going on, oh and still having trouble with that horrid woman, still waiting for personal items from her, apparently asking for them or going round there is harassment! Even an advocate i got involved had no joy, why keep them? All the money raised has gone into ITS property, all that hard work put in by MY family and friends was a waste of time.
I am probably going to told this is harassment again lol, but i don't give a shit, makes me laugh how low low people will go to justify their actions, even though what they do and have done is shocking and should be ashamed

Not wrote much about whats been happening so here goes. First off top gear live was fab, didn't get to meet any of them which was a shame but got plenty picture's, i will upload a few soon. 
After that came a choking fit, which resulted in an ambulance ride to whiston were i basically lay on a very uncomfy trolly in a room waiting for 2 and a half hour's, oh and they didn't have any pillows! I gave up and went home, waste of time. 
I am now being fed through peg all day and just eat  what i can inbetween, which takes the stress away from eating, i could kill for a big mac or burger king. Also have a sucktion machine which makes a big difference, great at getting toothpaste out. 
New wheelchair is on order and should be ere within next four week. It will be load's better as its a lot narrower, won't be knocking any more chunks out the wall's, door's and door frame's. 
The last week or so has been a struggle and seems show little sign of going, not being understood is getting me down and trying to get my word's out clearly is very hard and tirering, i am at a point were i don't want to talk, the eyegaze is getting more important by the day. 
My body is full of aches and pain's, my hands and arm's annoy the life out of me with them constantly being sore and uncomfy. We got the community matron out the other day because my peg was killing me, must be inside that's sore, take pain killers, so that's what im doing. Then yesterday i got a visit off Doctor, first time ever. He come to ask about my prefered place of care (were i want die) and fill a form in saying not to resusitate me if my heart stopped, this was after he spoke to matron, i wonder if there thinking what i am

Update

Anyone wishing to buy wristbands using paypal please send it to cvmnd@live.co.uk along with how many you want and your address details for me to send them to.  

Wristbands have arrived, anyone that would like any please contact me through my email, cvmnd@live.co.uk with how many you want, adult or kids, how you want to pay, address details if you want them posting. Please DONT MESSAGE ME ON FACEBOOK. Payment can be made though paypal, a cheque, postal order or cash in hand, please DONT send money via my website, as i want all raised to go to my local branch and not head office. Also DONT send cash in the post. Bands will cost £2:50 for both adult and kid's, so come on spread the word and get this shocking disease noticed, also don't forget to send photos with your band, funny or not it doesn't matter, this purely optional. 
Any questions get in touch, thanks in advance. 
 

Footware

One problem i am having is getting shoes and trainers, even my ugg boots are difficult with my toes curling, also struggle with them being freezing pritty much all time, so if anyone has any ideas or solutions please let me know.
Tomorrow its off to NEC in Birmingham for Top Gear live, all arranged by my fab cousons, should be good and hopefully meet the 3 nutters, either way i will have plenty photos for the memory wall.

Life in my own home is great and the bungalow is looking great too, i have to take my hat off  to St Helens council for how ive been treated through horror movie of the last 12 month, its not been plain sailing and i did wonder were i would end early on when i first went my parents from the black widdow, but now i look back and think its well worth waiting for, Thank you St Helens council and all involved.

Wristband update

Wristbands are ordered and should be here by november the 8th. They will red/white swirl like in the picture and have "Fight MND Together YNWA" and "www.cvmnd.weebly.com"  Dont forget every penny made will go to sufferers and not line the pockets of the charity big wigs! None is for research, even though we need, mainly because us fighting this horrendous disease right now will not benefit, we need help getting extortionally over priced equipment or alterations just to have a little bit of independance or normality. Any questions or ideas email me.

Wristbands

first off ive broke my wheelchair again! Still in process of getting the one i want.
Now ive thought about this before and now seems a good time, create my own wristband with my site on and give what i make to my local  mnd branch, also i am doing a photo wall so anyone who buys one can send a picture of them waring your band, funnier the better but try keep them clean lol, this is entirley optional you dont have to send one. We are looking at 2:50 per band and there will be a selected number of kids bands.
Be back soon with more info.

I have added a few pics of the party, those of you on my fb can see them all.

Its been pretty quiet this week for a change, felt a bit strange, spent a lot of time setting everything out on my eyegaze and adding bits, the one thing bugging me is the comunicater keyboard when using internet has no word prediction. Tonight a few work mates are coming for a few beers which should be good.

Been feeling a bit brighter and seem have a bit more energy! is it the new anti deppressant? who knows. 

Party Pics

On the real thing

Took my first dex that is defo the real drug, maybe i will see a difference! Sadly i wont be going ctu again so thanks to you all for looking after me and making the visits more barable.
Stil trying to perk up and stop stressing, i think i am on the up but the slightest thing knocks me back, i need go and treat myself to something.

So whats new

Every week is full of ups n downs, and its no different this week, news of a fellow batter who i had the  pleasure of meeting passed away rocked me to the core, i still cant believe it, my thoughts are with you all x.
This and other battlers i chatted to early days, have been there offering support for me all through while having their own shit to deal with, this has made me realise i could have done more to support them! Thank you.
One thing that was fun was my fancy dress party, everyone really made an effor and looked great , ive got plenty pics to upload, i will be putting them on website.
Tomorrow i will get the real dex trial drug ,which should be interesting, also a visit to the niv clinic in the afternoon.
Family and friends continue to amaze me,even while i am being a misrable get! to be honest i know i am. Its very difficult to put into words whats been going through my mind, a lot of it is the near future and what lies ahead, how long left, will it stop, all constantly popping in to annoy me so much so that i feel time is really ticking.

A quick note, seeing as you read this can you let me know my unreasonble behavior? as far as i amaware getting terminally ill is not unreasoable, or is? please feel free to reply here or email.
I dont want anything to do with you or your parents and i will not be bullied by anyone, also i will not back down.

Its all go

A new lease of life now with this eye gaze, its amazing! just being able to read and send my own txt messages, sad but makes such a differene. with each hour i learn more and get quicker, i am pretty quick at picking things up so mastering this should be fun. ineed to find a way to get a better voice, like keith lemon voice lol.
At the moment im very happy and learnt a lot about people, how fantastic some can be and how cruel, heartless and down right nasty some are, yes u know who u are! feel free to send police here, id love nothing more than letting the public know the story.
Moving on, their is only a few days to the big party, cant wait to se everyones costume, seems like quite a few are coming. Again my superb family are getting everything ready.

Changing subject, my progression seems to be slowing a bit which helps, maybe being happiest ive been in years makes a difference, no moaning and no stress, bliss. Had a new hoist put in today, hopefully get my new chair soon, so much going on at the minute it feels great, better a holiday booked with my partners in crime lol, where to go is the problem!

Eygaze

The eyegaze comes today weeeee, so looking forward to being more independant and being Able to txt again!
Also the sad gets who keep leaving comment's to advertise their shite go away cos i  will just delete them!