2002-09-19 - 7:02 a.m.
Hello again people ... im sure no one reads this .. i dont know why i both, but seen as its 7am and i have nother better to do i might as well give you an update of whats been going on!
OMEGA is going really well, and im sure you know about the confrance i have been asked to talk at. Im not looking forward to it as its badly orgonized and they want me to do soooo much to my web site thats going to cost me a bomb and take forever!! We shall see!! Im going to have to do it at some point i guess.
Houseing:
went to a meeting with my housing officer (does that make me sound special??) this week and she was soooper lovely!! After telling me there wasnt much hope of getting me a place in Histon because they only own 4 flats and one hostel that only has 1 single room (always taken) she told me that i can have the down stairs single room of the hostel!
I know it doesnt sound great but there is a warden, and its a small room with an en suit so i can get used to being on my own in a small place where i know there are people if i need them.
There will be a floating support worker who will pop by to make sure im coping ok with washing and shopping, although im not sure how often yet. And of course being in Histon means my lady friend will be about if i need anything! oooh .. and i think daddy's might turn in to a landret *evil grin*
Not sure if there is a phone line in the room so i might not be able to get on line very much. But im hoping if there isnt one, i can say that i need one for safty perposes, ie, if i have one of my ikkle fits and need me pa and so on. And if im pushin me luck i'l get me a cable modem fitted ... ha ha!!
I had an assesment from the Papworth trust (they do disabled accomidation along with a ton of other stuff) this week too. They will keep there eyes peeled for a house for me but in the mean time they are writing letters to the council to tell them what addaptions/ living conditions i need and so on. They were actaully really sooooper nice .. none of this 'yer, but you will get better' stuff or 'Its all in your heeeeeed'. When i said, i can do that on a good day .. she said 'you cant do it then' rather than listning to me talk my self out of being ill!! (i do that allllll the time!!)
She also said that i need a 2 bedroomed place incase i needed care or people to stay over, but also becasue i should seperate my acctivitys. So my PC is in one room and telly in the other, then eating cooking in the kitchen. She said it makes life feel diffrent than being trapped looking at the same things time and time again
So i dont know how long im going to be in the place, and i havent viewed it yet so i dont really know what its like, size and so on, but i should be moving in a few weeks *poops her panties!!* ... any big strong ladys want to come help me move .. thats fine
They say they only have 4 council owned flats/houses in Histon, so i might ask if we can bawden the search to the next village (its had to tell where one starts and the other ends they are so close) as i know there are quite a few relitivly new bunglows there.
It would still be in cycling distance for Fran and dad would be even closer. We shall see!!
I see my GP on Monday so i am going to ask him to write to the council about my needs (he is sooo lovely i just want to give him a big hug and a kiss!!)
I am also going to ask him for a wheel chair that i can push my self rather than the poooohy NHS one that i have at the moment as i cant really push my self in that one.
The lady who did the assesment sugested an electric chair but it would be really impratical as i wouldnt be able to get it in to a car or anything.
Im hoping to use the voucher system to get a chair but does any one know of any charitys who might want to help me out gathering a few pennys for one? Either that or if any of you want to sell cakes for me lol.
Any way, i will keep you updated!! I know your all as excited as me! lol, you all envited to a sleep over when i finaly get a place toooo!!
By the way .. if any one had spear cuttelry, tosters, microwaves, cookers, washing machines, sofas ... houses ... send em my way .. lol.
health:
As most of you know i managed to talk my mum out of sending me to county durham so i have been home alone this week. I thought i was coping quite well, managed to make one meal a day (although dont tell the DLA doctors )It hasnt been taking toooo much out of me.
But ... (you knew that was comin eh) i havent been sleeping very well, waking up every hour in pain and i just cant get in the right position.
Carried on any way and then i started getting brethless a lot and have been passing out. Hadnt been to bed this week apart from the brethlesness.
Woke up about 1:30am in agony, too a meptid and ran a bath.
Got in the bath and it was becoming harder to breath .. tryed to ride it out thinking it was just cos i have walked to the bathroom.
Only it didnt pass, i stood up to get out of the bath and passed out (OUCH!) work up on the towels ... put my legs up on the toilet to try and get some blood to my brain (no giggeling at the back there) ... got my breath back and started to shake .. so i got up to try and get back to bed only i passed out again. When i came out (when ever that was!) i have the post painfull pins and needles i have ever had. I honestly though all my blood had disapered and i was dying slowly.
I was shaking to the extent i could hardly talk or move and to stop the horrific pain in my hands i had to screw them up into fists.
Cwalled to my bed room and called my dad who came to my rescue!
He managed to get me down the stairs and to the hosp. Had to weight for about ten mins and i was trying sooo hard not to cry becasue if i had i think i would have died. I had so little breth i was dizzy the whole time.
The doctor was so shocked at the state of me, i couldnt really talk and because my dad doesnt know whats going on with my condition i was trying so hard to talk i kept falling off my chair though dizzyness.
He tryed to get my paulse and blood pressure but he just couldnt get one. He had to get my dad to hold down my arm i was shaking so much. He finaly got a paule and he said it was unexplicably fast.
He gave me some oxygen a piriton and some ventlin and sent me on my way.
I kinda felt sorry for him, he just ketp saying 'are you sure you have ME and not MS' he said he had never seen ME like it (that really scared me :-S)
Dad put my on the sofa with a glass of water and fed me a bicky (didnt have enough people to hold my hands to enable me to drink!)
I didnt sleep at all again last night and i feel sooooo rotten today!
I havnt told my mum what happened or she would be home from Cofu quicker than i can get down the stairs!
But im geting a bit worred .. i told my dad i would be fine as he had aranged to go away for the week end. I KNOW that was stoooopid, but i hate the thought of 'needing' a 'baby sitter' just in case i get in a mess again.
It was sooo hard for both of us last night, my dad looked so scared and i just couldnt do anything, he didnt know anything about my condition, the drugs i was taking and mum is the only person who can understand me when i get slured speach.
My dad also didnt know i am incontnante so it was extra aufl.
Why cant i just have 'normal' ME?? Just the head aches and the pain and the fatuige would do my fine! I'd be happy with that ... now i realize why mum didnt want to leave me. I had no idea what she does for me when i get like that. Sad to say things like that happen all to often for me.
I have started to reduce my amitript as i fear that might have somthng to do with the brethlessness. But that with ruin my sleeeeeep even more!
friends:
cant blieve what just happened
One of my best friends in the while world, Caroline, just called me as i said i wasnt very well and she was worried. This is my carer Caroline who took me away, who spent most of the time i was in hosptial by my side, who is always fighting with my mum because she doesnt agree with with the doctors say.
Resently she hasnt been about cos she got a boyfriend and she keeps promising to come over and see me.
Any way .. she called this afternoon and just before she went she said 'oh god, get out of bed, there is nothing wrong with you, your just a hypercondricat'
Now is some snooty doctor had said this, even some one who didnt really understand, i wouldnt care. I'd stick my fingers up and walk away. But Caroline?? I just cant believe she would say anything so stupid and hurtfull to me after all the things we have done for each other
She looked at me at 10% .. she knows this isnt in my head ... im gutted
all my love to Gaz & kat & Alam /7 hi to pete who i havent seen n ages :'(
send me luuuuvvv - Sunday, May. 02, 2004
newly free! - Monday, Mar. 22, 2004
its not goodbye - Friday, Mar. 12, 2004
burp - Sunday, Mar. 07, 2004
filling in :-) - Thursday, Mar. 04, 2004