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.