EDSG fundraiser

I will be doing a 24 hour sponsored silence from 8am on the 3rd of May until 8am on the 4th of May to raise money for the Ehlers Danlos Support Group. This is my very first fundraiser and as long as I raise somewhere near my goal amount it will be the first of many. Please donate whatever you can whether it be £1 or £10 (or more if you can afford it! lol) http://www.justgiving.com/emma-richardson1 Many thanks

Just incase enough people don't already think anyone claiming to be too ill or disabled to work is faking it: http://www.dailymail.co.uk/news/article-1260012/Prove-work-people-sickness-benefits-sent-fitness-test.html I wonder what would happen if I were to have to prove I can't work and were told to walk up and down some stairs I refused to attempt it because I know I can't walk downstairs safely and haven't been able to for years. It would probably be said I were uncooperative and it would be assumed then that I could work, if that was the case I'd have to attempt the stairs and would then ending up costing the NHS even more for the treatment I would need after that.
Another brilliant plan then!

sainsburys vs. morrisons

In the last few weeks I've been with my mum shopping to Sainsburys and to Morrisons, both of them have some good points and some bad for disabled people.

Parking
Sainsburys: their were several blue badge holder spaces and I didn't see any cars parked there without a blue badge although as we got a space nearest the door we didn't have to go past many cars so I only got the chance to check the 2 nearest cars. The spaces were near the door and they were extra wide with extra space at the back of the car aswell. However the markings weren't as clear as they could and should've been. Overall rating 4/5

Morrisons: Their were several blue badge holder only spaces here too but I did see a couple who were not clearly disabled parked in one of these spaces and soon discovered they didn't have a blue badge. The spaces are fairly near the door but could've been closer. The markings weren't very clear but the space was extra wide and gave enough space behind the car for safely getting a wheelchair in and out of the car. Overall rating: 2/5

Where the trolleys that clip onto wheelchairs are

Sainsburys: no sign of trolleys to clip onto a wheelchair so had to ask a member of staff. Were told they should be near the disabled toilets so looked round the corner where the toilets were and couldn't see any. So went down to where the disabled toilet was and found one trolley hidden round the corner.
Overall rating: 2/5

Morrisons: no sign of trolleys to clip onto wheelchair but when we asked a member of staff she was very helpful and went looking for one. she did have to ask someone else where they were though and no one seemed sure where they were. It turned out they were half way across the carpark although their were normal trolleys right outside the door!
Overall rating: 2/5

Ease of use of trolley

Sainsburys: the trolley clipped onto the arm rests. it was apparently a little difficult to steer but mum managed not to run into anyone or anything. I could reach to put things in the trolley almost to the end of the trolley. However we did have problems with the wheelchair wheels and trolley wheels getting tangled up and mum had to kick a wheel round to be able to move again at times. For someone in a self propelled wheelchair this would've been a big problem. Overall rating: 3/5

Morrisons: the trolley clipped on down at the bottom of the wheelchair near the footrests. The trolley was very difficult to steer as it could move a few inches to each side. It would move a few inches to one side then that would be as far as it could go and it would jolt the wheelchair and my legs, I soon had very unhappy knees.
The trolley was too far away from me for me to be able to reach very far at all, I could only reach to about 1/4 of the length of the trolley so if I'd been alone would've been able to buy more using a basket! Overall rating: 1/5

Morrisons vs. sainsburys overall score
Morrisons: 5/15
Sainsburys:9/15

This morning me and my mum had a talk about carers. My mum has agreed before that I could do with a carer particularly when she's working and my stepdad is away working (he can be away for up to 6 weeks at a time) but my mum doesn't like the idea of a stranger being in her house. So I've just had to manage without a carer and the things I can't do at all (like cooking) my mum does for me and the things I can't do one day because my body is falling apart too much or I'm too tired I do another day.

My mum used to work split shifts which worked quite well because I weren't alone for hours on end then but now on some days she works nights but 3 days she leaves the house at about 9am and doesn't get back until 7pm so that's a long time for me to be left by myself possibly stuck in bed because my pelvis has completely fallen apart.

So I have 2 options:
option 1: I get assessed by social services and hopefully get a carer to come in at least on those 3 days that I'm usually alone for hours. This would mean my mum wouldn't have to change her hours of work or her job and the carer would hopefully do some of the things my mum usually does for me so my mum would have more time to herself when she got home from work. The downside is that I've heard of some carers not turning up at the right time or not being good at their job.

option 2: my mum changes her work hours or changes her job so that she can look after me between the hours she's working. This would mean she'd have less time for herself and would also mean that we'd be spending more time together. Me and my mum have had our problems in the past and have both been trying to patch things up between us the last few years. Maybe spending more time together would help our relationshp but I get the feeling it wouldn't and would make things worse between us. But my mum doesn't really want a stranger in the house so maybe she'd be happier with this option.

So if anyone has any suggestions as to which option is the best please let me know because I need all the help I can get to make this decision

Why does everything have to be so difficult? http://www.thesun.co.uk/sol/homepage/woman/parenting/someonespecial/2880621/Elvis-school-in-a-class-of-its-own.html

I have an unbelievably stupid dog. Usually it's my younger dog thats always doing stupid things but this time it's the older one.

I'd heard Terror crunching something under the bed the night before and had tried to get her to come out and show me what she'd got. She did come out but without whatever she'd been crunching. I looked under the bed and their was only a load of dog toys under there so I came to the conclusion that she'd swallowed whatever it was.
I weren't too worried about this. She's swallowed things before that she shouldn't have so I decided I'd need to keep an eye on her the next couple of days but she would probably be ok.

Yesterday I was woken by Terror about to puke! I may have traumatised the poor dog because I knew I coudn't get downstairs on the snail speed stairlift in time to let her out so I grabbed the bin and shoved her head in there!

She spent a few hours in her little cage and puked a few more times. She did at least attempt to clean it up herself or rather to hide it with her blanket! She's fine now but I've figured out what she'd been crunching on and had swallowed... pistachio nut shells! So I'm now having to put the shells in a bag out of her reach rather than in the bin

I've just been on facebook and found a group that I'm furious about. It is called 'keep downs syndrome sufferers away from society' and the description is: These people are infecting our society and are contagious around young children. Please help to get them put into a secure unit. Their is a disclaimer which reads: This group does not break any facebook rules and is certainly not illegal, it represents nothing but opinion in joke form.

Think about what an uproar there would be if their was some such group not about downs syndrome but about a certain race or religion yet when it's about a disability it's fine!

And as for it being 'opinion in joke form' what?? How can people 'joke' like this about downs syndrome or any disability. It disgusts me and the worst thing is theirs 84 members!

It's been a bit hectic here for the last few days. On sunday afternoon my brother his wife, their almost 3 year old son and 5 month old daughter came to stay. They are very unorganised so soon had stuff all over the place.

I got to see and hold my niece for the first time and she didn't cry until she got hungry and couldn't find any milk. Usually babies cry as soon as I get hold of them, i reckon they realise my body quite literally falls apart and so don't feel safe. She didn't mind though even when my shoulder did dislocate.

My youngest dog had a great time licking fingers and faces and my niece spent alot of time watching her and smiling and laughing whenever she got licked

On monday we went to the nearest town which only has 2 wheelchair accessible shops and then went to the pub my mum works at so she could show off the grandkids. The pub has a couple of steps up to it but they do have a ramp so it is (sort of) accessible. Theirs a disabled toilet which was nice and clean but their were a couple of issues with it. Their wasn't a mirror and their wasn't an alarm cord. When I first couldn't see and alarm cord I figured i must not be looking high enough because often they're tied up out of the way so if you fall they aren't any use at all but no it wasn't tied up because their wasn't one.

Me and mum went home then so i could have a nap whilst my brother and his family visited my grandparents. Then we went to the local pub for a meal. Theirs steps up to that pub and not much room for a wheelchair once someones dragged your wheelchair up the steps and their isn't a disabled toilet but their is at least a grab rail in the ladies toilet.

Of course I'd done way too much on Monday so knew i would be a wreck on tuesday and should stay in bed all day to recover. I don't see my brothers family very often though so i weren't going to miss out on what little time I knew I'd have with them. So I took extra morphine in the morning (shhh don't tell my doctor) and then I could actually get out of bed.

We went to an indoor play area which my nephew thought was great. Some of the kids started bullying him but his grandma sorted them out. Not sure what she did or said but they looked a bit scared and left my nephew alone after that! I should really have gone into the disabled toilet and taken photos to feed Benefit Scrounging Scum obsession with them but I'd forgotten to charge my phone so couldn't take photos with a dead phone. I didn't go into the toilet so can't even report on it.

My niece thought my fingers were fascinating. She was grabbing them and pulling them in all sorts of directions that she's probably never seen fingers go before. She was quite good at putting my fingers back in joint too!

They set off this afternoon to go down to Liverpool where they'll stay overnight with my brothers wifes parents and then they'll get the ferry in the morning. I loved seeing them and wish they could've stayed longer but I'm exhausted! I'd love to have kids some day but don't think I will because they're just so tiring