How handicapped is handicapped?

Been more aware recently of being really handicapped as I am rarely on my own able to think my and develop any thoughts maybe write maybe do some podcasting but no none of those as I feel more internal and less able to share thoughts because of being too anxious at having a spasm and hanging over the chair.

What great neighbours we have.

An Iftar meal.

Last evening two of our immediate neighbours came by laden with treats from their Iftar meal, these are the communal dinners which take place after dark during Ramadan.

Wonderful pastries filed with a variety of ingredients, both savory and sweet and all on a beautiful plate heaped with dates and covered with a cloth.

We all had tea together and Richie and I ate some pastries And then they told us of their plan to pass our spare key that our upstairs neighbour has around five of them who are mostly home so that someone will come and visit when I ask otherwise they would check on me regularly from 14.00 til 17.00 till Richie is home.

Absolutely stunning neighbours, really wonderful people, we were both very touched by their their thoughtfulness and generousity. What a great community spirit we have in this block.

Wonderful world beautiful people!

Just another tuesday.

Been trying to work out how to deal with my new care routine. Difficult to write when my carer is here, she is here from 10.00 am til 14.00.

I find it particularly hard to write with someone hoovering near me it really puts me off. Mind you I also realised I was finding it even harder not to write. Really missing it and doing the podcasts.

Realize that its not just the new routine that is inhibiting my writing and the podcasts as I can easily write like crazy as soon as my carer has left at 14.00.

Problem is I often have spasms that scare the shit out of me so end up spending the time alone just concentrating on remainng sitting upright in my wheelchair. Often bending over holding on to the front of my chair for in case a nasty one flips me over the back of the chair.

Last night I decided that fear of spasms would not stop me writing and so at 15.20 I had rolled over to the pc to do just that. Meant to write til a good friend, Toos came round and then I hoped we would go out.

Sadly those plans did not happen instead I had a horrible spasm seconds after I nearly phoned Richie, as I had a funny feeling I might have one.

Didn't phone thought forget the feeling and shrugged it off and tried to get on with writing at that moment a spasm thrust my pelvis up out of the chair and before I could say or think anything I was hanging over the back of the chair.

Shit, shit shit there I was it was 15.30 my phones had fallen off my lap so I could not phone Richie and my friend Toos would not be here til 16.00.

Tried to remaiin calm easier when I have been able to phone Richie and know he is on his way. Today I kept a sort of calm broken by the odd shriek of help help help.

Toos was here 16.00 on the dot, sadly she does not have a key so she called Richie and left an urgent message on his voicemail.

Soon as he heard he called the house phone and left a message telling me he was on his way! What a relief to hear his voice and to know that he would be here within 15 mins.

By the time he got here there was a group of neighbours plus the police all milling around outside our door.

All in all I hung over the w/chair for 1 hour during which time I vomitted due to the horrible way I hang over the wheelchair. Getting skilled at vomitting in such a way as not to inhale the vomit and choke to death.

Finally my ordeal was over and my darling picked me up and got me sitting up again and Toos washed my face and got me some water to drink.

Now 2 hours later I am still in shock cos it was such an intense spasm as well as how scary it was to not be able to phone for help.

Really worried me not being able to phone so glad that Toos and I had a date to go out for coffee as Richie was not due back until 17.00.

New wheelchair for 30 minutes.

Last friday finally the wheelchair I have been waiting for since february arrived my happiness was short lived as soon as I sat in the chair.

The seating is adjusted so you sit slumped back with legs stuck out in front at a strange angle, bad for me as it causes spasms.

The wheels are too far back which makes moving round in the chair impossible plus its a heavy chair.

So all in all useless, but I did tell my case manager and the advisor in february that it was not the chair for me but they would not listen.

According to my advisor it was a great chair and she thought it was very comfortable. I told her to order it for herself and get me a chair I could sit in without pain.

My five seconds of tv stardom did not happen.

Well in the end I was not on the tv last week friday. And I learned something too, never agree to something when you have not made the appointment yourself.

I thought the appointment was that the tv. crew come to my door, I roll out and tell them what the resident's think of the building and the various things that are not working well.

Like the security gate being constantly broken and hanging half open, the lift not working and worse of all the metal stairs where people catch their heels.

And last but not least the open metal walkways which people in wheelchairs can not go over.

So there I was all ready with my script and finally the bell goes and instead of them being by my door they were by the front door.

The next surprise was being told that 10 councillors were waiting to come up with the camera crew and view my house.

Right away I said no way that was not the arrangement and I would not cooperate. Later in the afternoon a letter arrived, too late, to tell us our house was one of the 10 best new building projects and they were looking for volunteers to allow their flats to be filmed.

What a badly organised and sneaky way to get people to agree to be used like that.