Tuesday, April 29, 2008

Already a year in this flat!

On May 7 it's a year that we are living here when I look back I can see lots of nice things.

Like being able to go out without booking the mobility bus and without being carried down the stairs in that scary little seat swinging from hooks between two men.

Its nice and roomy here with lots of floor to ceiling windows so I can see out and enjoy all the neighbours going by.

It's a nice place for people to come round to and we have had more people visiting us here than in the old place.

Have really enjoyed being able to get out so freely especially going to the market, love being there seeing all the people exchanging smiles and hello's with strangers.

Looking at all the stalls and admiring the wares, the colours and the smells. Beautiful!

What's not been so beautiful is how much my condition has deteriorated since last May.

Last May just after we moved I could not write with a pen any more, one minute I was writing lists and the next that was it could not hold a pen.

Now I can just about manage to eat, getting the fork from plate to mouth is a hell of an effort.

Picking up a glass is tricky and I can't drink out of anything but plastic cups these days.

So my days of sipping a rum punch or a nice wine while eating pistachio nuts are sadly over.

The wee bit of mobility I had last year is gone as I can no longer put on a top of jacket or my earrings.

Can just about brush my teeth but not put the toothpaste on my brush, can't even wash my face can't cup my hands and bring water up to my face.

The passive hoist has been bad, very bad for me as it caused alot of spasms, putting the straps von caused me dreadful painful spasms.

This was also because none of the carers could use it properly, despite Richie showing them how to put it on and both of us explaining it to them thoroughly time and time again.

Every time they caused me alot of pain and discomfort, plus by the time I had explained how it worked every time they came round (three times a day)it was too late and I had wet myself.

The passive lift took away all my control over my bladder as I no longer got pulled up onto my legs so my legs and my stomach muscles became unused and totally inactive.

Which resulted in even more spasms and because they were generally late and often just never turned up at all it meant I was often left sitting in wet pants and literally in shit.

As a result my doctor suggested a catheter as it was distressing to be left in the lurch so often.

The day after the doctor had installed the catheter without warning the people supplying the carers decided unilaterally to reduce the number of their visits from three times to once a day.

This was dreadful and scary as this was the time I had loads of spasms and of the sort that toppled me backwards over the w/chair, very scary.

Despite us having to pay alot they were not doing much for me apart from putting me on the toilet, they were supposed to shower me and dress me but often would suggest a quick wash instead.

They always made it clear they had no time so I would have to be very assertive to get them to fill up my water bottle and make me a pot of tea.

At lunchtime I sometimes would not be quick enough reminding them to get me food Richie had prepared out of the fridge for me.

When that happened I would have to wait until their third and last visit at 14.00 pm.

Because the agency we were with cut their care down to one 10 minute visit per day we went to another agency and it all went from bad to worse.

These people were mostly crap, two were at least nice and with one I did feel safe and we did have a laugh.

Laughing is important but so is good care and attention to details and this is especially important when you are looking after someone who has become so handicapped.

The problem with a catheter is that the carers and we were unaware of the risks of sitting continuously all day without being lifted out of the w/chair.

Its really important to literally get off you arse otherwise it will result in sores on your bum.

I would really recommend others to not switch too quickly from an active to a passive hoist.

Keep using it as long as possible as once you use the passive lift it will affect your whole body and making it too passive too quickly.

This will result in all sorts of problems its like dominoes tumbling over or a chain reaction.

The knock on effects are spasms, loss of bladder control, muscle weakness and sores on bum and legs.

Which again precipitates further reactions in your body and causes great stress and this you do not need.

Looking back I think now happy days when I was not constantly in pain when I could roll around the room using arm power now I am in an electric w/chair.

Feel like the Star Trek captain encased in his machine, like him I am now half human half electric w/chair.

In a wee while its off to bed and Richie will have an hour of hard work as he hoists me out of the w/chair and into the movable shower/toilet chair and puts on my night time tee shirt.

Then its off to brush teeth apply soothing gel to ears, throat, neck and arms that have been scrapped raw by tee shirt and jumper being pulled over my head.

After that its time for Richie to empty the catheter bag once again and get my bum washed and cream applied helps keep skin moist and stops it drying and tearing and then its on with the disposable pants and long john's and then its sleeping tablets and bed and oblivion.

But hey I am still tapping out some words, talking and loving and laughing with my darling.

Thursday, April 24, 2008

Sunny afternoon on the market

Sunny afternoon on the market on tuesday with Marianne.

Had a great time.

Was happy all evening.

Reminded me again why it's important to get out.

Still happy today.

Sunny afternoon on the market

Sunny afternoon on the market on tuesday with Marianne.

Had a great time.

Was happy all evening.

Reminded me again why it's important to get out.

Sunday, April 20, 2008

Cold saturday on the market.

Cold saturday on the market today but good to get out must try to get out more and will once it gets warmer.

After all the pain and discomfort are always there so might as well be out seeing and interacting with people

Saturday, April 12, 2008

A real saturday,

Lovely visit to the market today in sunshine which was wonderful.

We went the whole length of the market and I looked at all the stalls saw all my favourite market stallholders.

Saw one that I have not seen for a few years as his kids are now running it.

He is a lovely man, have bought delicious things like olives and goat cheeses and fresh mint and fresh dates from his stall since 1985.

Brilliant afternoon and well worth it.

This is a video of Chinese soldiers killing Tibetans attempting to leave the country..

Friday, April 04, 2008

Social Distortion- Ring of Fire.

Always have to be an instant expert.

Just realised that I have been putting off doing a new post til I had something extraordinary to say.

Keep thinking that I have got out of some old patterns and then bingo I am doing it again!

Why can't I just drop all that perfectionist shit and concentrate on the things that are important to me now like my blog. Like new posts about how I am and what I have been doing.

Notice that I have not mentioned how my body is recently, guess that I am trying to not think about it, trying not to worry.

And it seems to be working which is good as it means that the other old habit of worrying about things before they happen is not happening.

The other reason that I am not posting is that it's quite alot of work using the keyboard with hands that won't do what I want them to.

Have lost coordination and sensitivity in my fingers which has had me quite upset and angry at times. And has made me rant and rave and swear alot until I realised that it was all directed at my hands!

Speaking is easier than typing for me now, mind you in two months I should be getting a headmouse and software for an on screen keyboard.

Works in conjunction with a tiny sticker on my glasses that operates the headmouse, which is like a webcam.

Have to learn how to use the onscreen keyboard that has to be better than one fingertip typing and being constantly frustrated.

Really looking forward to the headmouse arriving and hope that I don't expect myself to be an expert within minutes like I do with everything.

Oh well that's perfectionists for you!!