I will no longer post blogs on this one due to problems with software, i will add a link ASAP.
Iff you dont like what you read on this site then its simple stop purposly taking the time to search for it in the first place and then send the police round my mums asif they havnt got enugh to worry about. If you dont like it dont look! At least now the police know the full story the truth.
Right trial first. I’ll be
going on the real drug next month, which I hope slows down the T, god
knows I need a plateau.
Next its my wheelchair should get changed soon after
a good moan today, trouble is money as always, im sure anything that helps
disabled people has 50+ % added just for good measure! Which then leads me to
the eyegaze, amazing thing that I will have this week thanks to my fabulous mum
and dad, but it has come at a cost! My parents without hesitation used their
pension to get one, its annoying that things like the eyegaze cost so much when
the independence it gives you is priceless.
Had another set back, all set to kick tossers arse then i have a shocking
night last night, could not get comfy at all even with 2 carers helping, had
fit which scared me then fell to bits crying like a blubbering
fool. Started again
once i got up this morning, slavering and blubbering!
This so tough to deal with. Bed hurts me, wheelchair is shite, neck aches doing
this and the list goes on!
Yes i have amazing support around me and im so
lucky, yes i am so so grateful but inside i feel very alone! After all there
isn't many that know how this feels.
Get the straight jacket and padded room ready.
When i have got this bungalow, a million times better than that extension!
Here are a few snaps.
Best buds! Danny and myself.
The fab poster my lovely sister x
My signed jacket that was framed by the Boon and Braddock clan, thank you
guys so much x
My ace tv with surround sound... Ooosh!
My bedroom,oh shit rude pictures! thats the same as cheating isn't it? or is
that porn? What load of shite,get a grip lol
Front room with my cool fish tank.
Thats it for now my necks aching, be back tomorrow with more, n thats that.
Off to stanstead in a bit which should be good,have a few beers and watch the
wine angels!Hopefully come back with something positive, like how get a eyegaze
without getting a mortgage out!
Its been tough the last week or so, been quite down alot and getting realy pissed off with this disease! The frustration of not being able to speak or be understood is extremely tough to get my head round, out of all the losses iv dealt with already legs, arms, peg tube, etc this has to be the one thing that as knocked me for six! For the first time in this journey i was feeling ready to give up! but no i cant give up because theirs so much to look forward too, i want to see hollie grow up and plus i have only just got this bloody bungalow, oh and not to forget the big party coming up.
This laptop has not helped with me strugeling with the grid 2 and smart nav, iv felt like throwing it through the window only for my arms not working, problems that i could solve in the blink of an eye at one time and now it winds me up not being able to do some of the simplist things, desperatly need assisted technology to sort things out.
Looking forward to the AGM tomorrow at stanstead with mum dad and our rachael, hopefully meet up with someone
Well the wedding was great, a really lovely day, congratulations Kev and Kath. I will post a few pics on the website.
Now the moan, losing my speech has to be one of the hardest things yet, the frustration is imence and doing my nut in, i feel bad when somebody doesnt understand me because i show my frustration but its me getting angry with myself! Food is a tough one too, my little tetras (tiney fish ) eat more than me! Choke on almost anything, no more madras is gutting.
Oh wheelchair got fixed today.
Whats it like living with MND?
Take your worst nightmare and times it by a thousand and your still nowhere near! Its HELL, watching your body waste away in fast forward, like rigamortice setting in before im dead, ive more than one foot in the grave, more like only just poping my head out! And thats that.
No not me, been their done that and not daft enough to do it again lol. Its my cousins, should be a fab day and i wish them both the best.
Later its party time at mine, hopefully not get too drunk!
Ive crashed and snapped a foot plate off! Whoops, nearly broke my foot other week lol.
For the brave ones you click the link on the right to read from the start.
Big thanks to Kim for the lovely donation.
Hopefully get some updated photos on here soon.
To read from start click