About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Saturday, October 31, 2009
That is Life.
Last night I was quite dreamy as we were getting ready to sleep, two things did not aid sleep one was talking to Richie.
And the other much more disturbing thing was the parties with their dull droning bass beat, which is sadly all the neighbours hear.
The dull droning bass beat and lots of excited screaming and screeching of happy party goers were not exactly good to go to sleep with.
The dull drone really had control of the airwaves for what seemed like eons but was only for several hours, I think that I must have lain awake for three hours.
Realised at a certain point that I needed to do something to resolve the situation; a pill and a bag of THC, the THC to relax me while waiting for the pill to work.
Guess the pill worked as I slept until 11.30 which is not bad at all rather disappointed that I had to use a pill to sleep last night.
Really want to get back to the happy days of inhaling 3 bags of thc and this would let me sleep until 9 to 9.30, sometimes even to 10.30 and to 11.00.
Found myself thinking about books both when I was drifting off as well as when I woke this morning.
In 1974 I went for an interview for a job as an offset litho printer with Metal Box in Baker Street, London.
I was interviewed by the head of the Personnel Department, a stern looking woman, called Vera Wood.
She asked me about the books I was reading and seemed quite surprised when I enthusiastically told her all about the author I was reading at that moment called Laurens van de Post.
Laurens van de Post is an Afrikaner, who wrote amongst other books The Lost World of The Kalahari; he did not agree with Apartheid, his books were about the life of the Kalahari Desert and the lives of the African people.
Laurens had been fortunate to get to know Africans as a child and with a child’s lack of prejudice.
I got Vera Wood so interested in his books, that I lent her a couple there and then that I had finished already.
I also got the job which started with a six week offset litho printing course in Acton, West London before starting work at the Metal Box Head Office in Baker Street, Central London.
The train journey was excellent for my passion for reading and I read quite a few books before the end of the course.
And once the course was finished I was travelling daily to Paddington Station and then because the short tube journey was so crowded and claustrophic.
And there was always the chance of being taken a stop further, just like I was the first day when I got taken to the next stop, which was Madame Tussards.
I decided to walk the twenty minutes to and from Paddington Station everyday, this was a good decision as one of my colleagues and her husband did the same journey everyday.
We ended up getting 40 minutes exercise every morning and every evening.
Some of the other authors that I read in 1974 and 1975 were:
Black Boy and The Outsider by Richard Wright.
The Little Foxes and Pentimento by Lillian Hellman.
Hear The Grass Singing and The Golden Notebook and The Four Gated City and The Good Terrorist by Doris Lessing.
Living my Life and Anarchism and Other Essays by Emma Goldman.
Jane Eyre and Emma by Jane Austin.
Vida and Woman on the Edge of Time by Marge Piercy.
Sexual Politics and Flying and the Prostitution Papers by Kate Millett.
The Female Eunuch by Germaine Greer.
Beyond A Boundary and Letters From London and Minty Alley by CLR James.
A Bend in the River and A House For Mr Biswas by V.S Naipaul.
The Tin Drum and Dog Years by Gunther Gras.
The Buddenbrooks and Tonio Kruger by Thomas Mann,
Washington Square and Portrait of a Lady by Henry James,
Patterson and Collected Poems by Carlos William Carlos.
War and Peace and Anna Karenina and The Death of Ivan IIyich b y Tolstoy.
Metamorphous and The Trial and The Castle and The Penal Colony by Franz Kafka.
A year later Metal Box moved to a brand new office in Reading town centre a mere twenty minute walk from where I lived.
Although it was excellent not having t o catch the train at 7 am every morning I really missed the train journey and especially the reading time.
There are always swings and roundabouts and ups and downs.
That is life I guess
Friday, October 30, 2009
Optimistic now that I can sit again.
Yesterday was the big day that the adaptation was finally brought around, only realise now how much I had been anticipating the appointment and how worried I had been.
Had not realised how worried I had been but know that I have been and am no longer worried as I slept very well last night.
What amuses me today is that I was lying there last night convinced that I would not sleep and promptly fell asleep.
Just before they all arrived yesterday I felt terribly nervous and then they all got here and I was instantly ok, just wanted to get on with it and sit.
I was sat in the chair, Elwin had a good look and Ludwine made some adjustments and Elwin made some marks where he needed to reduce the mould.
At this point I was put back in bed and after some adjustments; I was hoisted out of bed again and sat back in the chair to see if there were more adjustments needed.
Elwin made some more drawings of the parts that needed adjusting, and Jenny arrived with the pressure gauging cushion which was extremely useful.
It pinpointed exactly where the pressure was, and it turned out to be exactly where the wound had been.
Ludwine and Jenny gave Richie a master class in how to recognise how I am sitting and how to rectify and correctly position me so that I am sitting properly.
It was a very tiring day, all the anticipation and then twice being hoisted in and out of bed and at the end of the afternoon Elwin had to take the chair and the adaptation away with him to finish it off at his work.
Shame as had wanted to sit up for awhile after the appointment, had wanted to leave the building and go downstairs and round the side and say hello to Willes.
Still never mind, the wheelchair and adaptation was back here early this morning at 8.30 and this afternoon I can sit in it and gradually get the hang of sitting again.
Am so curious how it will feel to move around of my own free will and without someone else pushing me.
That is quite an exciting thought that I will be able to move from room to room when I want to.
Not sure that I can actually cope with visualising that idea, think it will make more sense when I do it rather than try to visualise something that I have not been able to do for over 14 months now.
Right now I am looking forward to sitting again this afternoon, in fact I am really looking forward to sitting for an hour a day to start with, and hope that it goes exceptionally well and by next week I will be able to sit for two hours.
Not sure whether there is enough time for me to build up enough hours sitting in the wheelchair so that I can go to the gig on the 21 November.
That is why it is such a shame that I did not get the adaptation fitted onto the chair earlier as every day really counts in order to build up enough time sitting without ant negative affects on my bottom.
It would upset me a lot if I am not ready to go the concert on the 21 November, but it would upset me even more if I developed another pressure sore that turned into a deep open wound.
That would for sure be much worse indeed.
For now I am optimistic that I will be able to sit up for four hours by the 21 November.
Optimistic and looking forward to what happens next and new adventures to be had.
It is Friday again so quickly, this time it it is the day after getting the adaptation, the day my life starts again and the day when I can decide when I want to sit.
Hope everyone has a good day too.
Thursday, October 29, 2009
Life is Moving Along Again.
In an hour’s time they will all be here, I believe there will be my advisor Michelle,
and Harm from Welzorg and Elwin from Summit and Ludwine, the ergo therapist and her colleague Jenny, both from the RCA.
When they get here I will be placed in the chair and Elwin will check that the adaptation is giving me the support that I need.
When Elwin has made all the adjustments needed then Ludwine will check that I am indeed sitting correctly.
At this point Jenny will get me lifted lightly off the chair so that the pressure gauge cushion can be placed under me so that Jenny can check that the pressure is well distributed.
Once that has been completed I will be able to test out the wheelchair and adaptation, and after two weeks Elwin will make an appointment for an evaluation.
Where he will no doubt check whether he has to adjust or fine tune anything to give me better support.
Of course if I need help before the evaluation appointment I am sure that I will be able to get assistance should I need it.
Well it went very well, I was placed in Summit’s chair to test the adapted seat and it felt good, felt like I was sitting well supported in a comfy armchair.
Elwin checked whether I was well supported and Ludwine double checked to see if my pelvis was in the right position.
Then I was put back into bed so Elwin could adjust the left arm rest so my left leg had a touch more room.
Once that was done Jenny arrived and placed her pressure gauging cushion on the seat and Richie placed me on it, at first the laptop showed too much pressure on the right side where the wound had been.
Then Ludwine and Jenny showed Richie how to carefully adjust my pelvis so that I was sitting better, this instantly removed the red pressure from the screen.
Richie saw very clearly how I need to sit and is confident he will be able to put me in that position.
It was a tiring experience especially with so many people here, tiring and busy but so worthwhile.
A good friend Skyped me just as I was put back into bed, it was very nice to talk to Lucy and tell her what had just happened.
Feeling kind of tired now and keen to get out of bed and have a shower and then eat dinner.
A pleasant feeling knowing that tomorrow the chair will be here and I can start to sit up for an hour a day.
Hope that by next week I can start to sit for two hours, life has become really very exciting now.
Wednesday, October 28, 2009
Sleep proves elusive before Thursday.
Last night seemed so relaxed but no matter how much I tried sleep eluded me for hours.
When at 5.15 I still could not sleep Richie gave me a lorazepam and that seemed to do the trick and I slept until about 12.30 when I was awake again.
I do feel that I have taken a pill; it makes me feel slightly weary of everything which is not how I usually feel or how I like to feel.
It is a sort of seedy feeling as if you have rented out your body and are not sure the temporary tenants did not trespass where they should not have.
Think opiates always give you that feeling, the feeling of being lived by proxy that is why I do not usually like to use these pills.
It was just did not want to go totally without sleep especially as I want to be relaxed for the big appointment tomorrow.
So may take one of those lorazepam tonight but then right away and not when the night is near over like this morning.
No wonder I feel so seedy today, as I did not sleep for the full time that I could have slept.
The day has been bright and sunny, the blue sky is now get ting cloudier as the afternoon comes to an end here, and it is 16.35 here.
This is why I hate the time being changed as we can never fully appreciate these fine autumn afternoons and evenings.
This is end of the afternoon, the blue tits have been stocking up on peanuts, so have the parakeets, today eating and not squabbling with each other.
Have to get Richie to top up the nuts soon so as to keep the birds well fed; they do need it now there are fewer insects.
Love to see the birds at the bird feeder, realise more these days how much I still miss the beautiful wildlife in Trinidad.
Had not realised that there were over 30 species of lizards in Trinidad and as many types of frogs.
Also an amazing amount of birds a real treasure chest of wildlife, thankfully they realised what a little gold mine they were sitting on so the wild life in Trinidad is being protected now.
Sadly not in time to save the ocelot, there are no wild ocelots roaming free in Trinidad but it is the place to visit if one is a wild life enthusiast.
Here is a link to the Asa Wright Nature Centre
http://www.asawright.org/
Here is a link to the wiki Natural History of Trinidad and Tobago
http://en.wikipedia.org/wiki/Natural_history_of_Trinidad_and_Tobago
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