new chapters

A new chapter

The best new chapter would be if could type with both hands again. Blimey I would give a lot to be able to type like that again. The so-called good old days when typing was no problem, only those good old days are only three weeks ago.

Three weeks ago I had no problem with my hands could type, write and eat with knife and fork or both hands. I could even hold my mediwiet joint between my fingers and not have to clamp my finger and thumb around it to guarantee it does not drop on the floor or even worse between my legs into that uncharted territory which only gets seen every time the hoist lifts me off the wheelchair.

Three weeks ago I could rattle off emails, update my blog in minutes now its sweat and tears to get a couple of sentences written. Its not just the typing its my posture that seems worse too.

Since my left hand does not work anymore I find my posture has got worse too, now I have to hold myself in position with one hand. This makes typing difficult but not impossible certainly not if it means no communication.

Can’t quite believe today finally got the long awaited letter and of course I got a knock back. As Richie says they closed ranks and I got shafted, for me like all applicants for help I get cheap and adequate help not help based on my handicap or needs. So I get the chair the arca advisor recommended, well she didn't the man from sunrise did when he realised he had been given the wrong information.

Shame not many people doing that sort of work give a fig for what they do, certainly the clients are the last people they try to help. Work they survive in a bored haze of pretending to be very busy. Mind you not everyone is like that. Yesterday I met an advisor from arca, a new colleague of the people helping and advising me. It was pleasant to meet someone who actually does their work and well too. Also a very good manner which is essential as its not ok to be treated like you don't matter when in reality its all about us and not them.

We finally moved to a new flat, took 5 months longer than we hoped for and sadly that means I do not get to do so much here as I had hoped. If only we had moved sooner I could have had all the pleasure of getting out and about on my own exploring my new neighbourhood. In the meantime my condition has got worse.

We moved on the 12 of May, two weeks after we signed the contract. MD was brilliant he did everything. Painting and laying the floor with the help of good friends. Then he had to clean and repair the other flat and when it was done he got sick.

Week before last MD got pneumonia, the infection is gone but he still needs to recover. Luckily he did not have to go to hospital. I realised then how fucking helpless I am now I can't help myself at all. Pretty scary hate to think how easy it is to end up uncared for by someone who does not love you in a care home. Scares me shitless.

Means we are still living in a mess, clothes are in plastic bags, books and records in boxes and half the kitchen equipment also in boxes. On top of that I just got a new hoist a passive one in which I get pulled up out of my chair and put on the wc or in and out of bed. Bloody horrible to get dressed it’s a huge struggle for MD. Luckily he has been home so we can get used to this new reality together.

Have to find a solution for the wrestling match and [ai seswsion now that dressing has to take place on the bed.Poor md's back as he struggles to get my trousers on. There must be a an easier way.

The dogs went abit out of control in the first weeks but it was just moving nerves they love it here now. Because of the all the floor to ceiling windows they can see the street in this flat. Brilliant for them less so for everyone else as they got used to the novelty!

Sadly we have not got round to curtains yet but that will be the next thing. Important as it will change the whole feel of the place. The living room/ kitchen is bright yellow walls and green floor so green and yellow tie-dye curtains would be nice. All MD's ideas and so far it looks great.

Ok going to have a medicinal joint, get it on prescription it helps alot. I am totally dependent on others now, can't even go to the toilet alone and as for going out alone forget it as I get spasms some quite intense and I would need help to regain my seat. So could be real scary to attempt any journeys alone even to the shop on the corner.

Legs are painful all the time and now I can only type with one hand, which is a bloody nuisance. I got some voice recognition software, which I need to practise with first. Blimey it really isn’t bullshit that old cliché about how you don’t know how good you have it until its gone its bloody true. Here it is I can only type with one hand now and these days I need an extra hand to help me keep my balance.

Bloody hell the pace of the constant changes has been fast. Shit in hell from upright to totally cripple in a year. Hope a lot of it is down to the weather and not a permanent deterioration. Heat is real shit for me sets off spasms up and down my legs and major spasms right through my body. Too may for me to relax. Going out alone seems unlikely.

Here we are in our new flat its nothing like the old flat. It’s lovely and light here so different from the other flat. It has heaps of windows, in total there are 12 windows, 8 in the living room/kitchen all floor to ceiling. Cost a bloody fortune hanging all those curtains, hope they will look good. Funnily enough I keep getting addresses confused and keep referring to the address we lived at previously, that was 7years ago. I am not surprised at all as the last year has been difficult really stressful

Getting on with it.

Feeling sorry for myself is no longer an option now I have got one of those nasty incurable diseases. It was alright to feel sorry for myself when it was nothing serious, but now when I have every reason to feel really sorry for myself and wounded that this has happened to me its not an option. Can’t afford it cos the result is I get worse. My only option is to get on with it although right now I don’t really have a clue what I should be getting on with. Or how.

One thing I had wanted to get on with was my writing but my hands have stopped functioning as hands, one all the fingers stick together real difficult to put gloves on it’s like a spatula and both splayed open and spasms grip both. Writing with a pen had been very up and down, one day ok the next crap totally unreadable even for me.

Get on with what? Being independent is not one of the things I can get on with that’s gone now. I can get on with getting on and hope its not so bad bullshit sounds like sainthood fuck fuck fuck. Ok I will try to get on with learning to overcome my fears get into the habit of fearlessness.

Mind I don’t need any new habits cos that implies a movement which is repeated over and over again. If you do something over and over again, does that ensure anything except monotony? Is fearlessness a habit? Surely, fearlessness comes only when you can meet the incidents of life and thrash them out, when you can see them and examine them, but not with a jaded mind that is caught in habit.

If you do things habitually, if you live in habits, then you are merely an imitative machine. Habit is repetition, thoughtlessly doing the same thing over and over again, which is a process of building a wall round yourself. If you have built a wall round yourself through some habit, you are not free of fear, and it is the very living within the wall that makes you afraid. When you have the intelligence to look at everything that happens in life, which means examining every problem, every incident, every thought and emotion, every reaction - only then is there freedom from fear.

Happy days!


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