About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Friday, January 18, 2013
Thursday, January 17, 2013
Feeling positive despite limitations.
Roberto
Matta
Two
appointments I was dreading one yesterday and one today went very well which
was a tremendous relief for Richie and I.
The
appointment yesterday was with my case manager as well as my advisor, they both
work for the councils mobility Department.
They are
both very good women, who have to work within tight parameters nevertheless
they do as much as they can for me who is admirable.
2 other
people were also present and they were Percy from Welzorg and Ruud from a
company called Summit, they make the custom-built wheelchair backrest.
We were both
not looking forward to this meeting however as soon as Jacqueline my case
manager arrived the appointment started positively.
She
suggested we make a list of all the things we did not like about the wheelchair,
and there were many points all of which were noted.
By the time
everybody was here the list was completed, at first the four of them turned their
attention on the wheelchair examining it thoroughly.
Finally
Percy said that there was nothing that his company Welzorg can do to improve
the wheelchair finally there were no more prevarications.
Right away Jacqueline
decided that the only cause of action now was that I needed a new wheelchair.
This means
a new supplier so I do not have to deal with Welzorg anymore about my
wheelchair which was fantastic news this cheered me up tremendously.
On the 30th
of January I have an appointment at 1400 with Annelies my advisor and somebody
from the new wheelchair supplier Beenhakker to discuss the new chair.
In the
meantime Ruud from Summit will temporarily adjust the backrest on the
wheelchair, as soon as it known which wheelchair I will get he will make a
custom built backrest for the new wheelchair.
Richie and
I are very pleased with how things went yesterday this really is progress and
this time we will make sure the new wheelchair is a good one.
At 1200
today I have an appointment with the doctor from the rehabilitation clinic as
well as Milou the wound nurse.
This was the
appointment I was dreading the most as I knew that Janneke the Dr was going to
cut some hard skin off around the edges of the wound.
In order to
stop myself lying awake all night
thinking about it I took a sleeping tablet which worked very well.
The
procedure seemed to take forever luckily I don't feel a thing nevertheless I
was relieved when it was all over as it's not my favourite activity.
Janneke was
very positive about the wound saying it was looking good and nearly healed up
which was good news.
Hopefully
trimming off the hard edges will help the wound to finally heal; it would be
great if that were to happen at the same time as I get my new wheelchair.
Tuesday, January 15, 2013
Monday, January 14, 2013
Precious moments.
Roberto
Matta
After I had
written Friday’s post I found a piece of artwork by Roberto Matta and tried to publish
on my blog sadly everything froze which was frustrating.
Deciding
there was no need to panic I closed up my laptop thinking that I would be able
to put the blog post on my blog on Saturday afternoon.
As usual
everything went differently on Saturday so I did not spend any time using my
laptop that day nor on the Sunday, nevertheless I managed to relax and enjoy
the weekend.
Slowly I am
beginning to understand that there's not much I can do when things either go
wrong or don't go according to plan, its better that I remain relaxed.
However it
is not always easy for me to keep calm and be patient, that is not really me as
I am very impatient person, despite that I have learnt how to deal with it.
The weekend
despite not going according to how I wanted was extremely enjoyable, Richie and
I laughed a lot and dogs were very happy too.
today I'm
just enjoying the fact that I've been able to access my laptop, check my
e-mails and write my blog, hopefully also my Dutch blog.
Richie took
the dogs for a long run to the Amsterdam Woods, where I'm sure they are having
a fine time, as I am being able to write this.
Friday, 11 January, 2013. The tipping point.
http://en.wikipedia.org/wiki/Roberto_Matta
Writing
yesterday was very enjoyable it made me feel a lot better; it is so good to
have an outlet for my thoughts as well as my feelings.
I was very
touched that I received so many supportive comments from blog friends, it was
really lovely to see them all, and I was very moved by them.
Thank you
for visiting and leaving your comments I really appreciate it so very much,
probably more than I can express in words.
While I'm
writing this I got the television on without the sound, it is the Antiques Roadshow
on BBC two, a programme I like watching a lot these days.
It’s been a
relaxed day to day, my pain as being managed well using THC, which I inhale
using a vaporiser which is better for the lungs then smoking.
At the
moment Richie has taken the dogs for a charge around the Rembrandt Park as well
as plenty of playing with sticks and each other.
When they
get home Richie is going to make us a delicious dinner of toad in the hole with
roast potatoes, roast parsnips, cabbage and gravy.
Which I'm
looking forward to, it's just the weather for it too as it has got a lot colder
today, temperatures plunging from 10° to 5° and 3° tonight.
I have a
lot of things swirling around in my mind that I want to write about, and am
planning to do just that in the next days.
One of them
is the death of the young promising medical student as a result of the brutal
rape on the bus; there is quite rightly a lot of anger in India and elsewhere
in the world.
It seems
that this is the tipping point for the position of women in India and worldwide,
hopefully 2013 will be the year when women stop being second class citizens.
Thursday, January 10, 2013
Taking one day at a time.
Roberto Matta
Getting
back into writing my blog every day is proving more difficult than I thought,
especially when everything seemed to be going against me.
Last
Thursday when I wrote my first post since I stopped blogging on the 11th
of December I was very happy until I tried to post it on my blog.
I had
chosen a picture by Roberto Matta, however when I went place it on my blog
everything froze and nothing would cooperate with me.
After a
while I tried to publish my blog post without the artwork but that did not work,
in the end I was so frustrated that I decided it was better to stop and try
again another time.
However
everything went differently to how I planned and I did not manage to get back to
using my laptop until Monday this week.
Then I was
surprised to see that my blog post despite all the problems had been published
on my blog just without artwork and a title and labels.
After I
added the missing artwork, title and labels I realised I would have to stop as
my index finger was not cooperating with me.
So I
reluctantly shut down the laptop and decided to relax which is not always as
easy as it should be, but I did my best.
Luckily
this week I've been able to do my arm and leg exercises Motomed without the
discomfort I have been experiencing in previous weeks.
Because the
curvature of my spine is progressing it means that the backrest on my
wheelchair does not fit me well anymore and does not support me as it should.
The result
in recent weeks has been the I am sitting leaning to the left which is not a
pleasant way in which to do 45 minutes of exercises.
I was
getting quite downhearted thinking in due course I would not be able to do these
exercises which are vital for my well-being.
Luckily
Richie has been able to sit me in a wheelchair in such a way that I am able to
do the exercises on the Motomed without any discomfort.
Hopefully
my joy will be made complete when I can successfully publish this blog post
with artwork, title and labels tonight, then I will be happy.
Monday, January 07, 2013
Taking a break.
When I
decided to take a break from blogging on 11th of December I did not intend to
stop for as long as I have, as it's now three weeks ago that I wrote a blog
post.
On 11th of December
there was a lot going on here, we had the unexpected visit from a good friend
John, who we had not seen since 1993 apart from a brief visit in 1999.
It was
quite incredible; it was very emotional but lovely to see him again after all
these years, a very special visit from a special person who is a close friend
of Richie’s.
When I
decided to take a holiday from blogging I only meant to stop during John's
visit which was from 8th of December until 16th of December.
On the day
after John left I decided to extend my time off from blogging to enjoy the days
before the winter solstice and then Christmas before writing again.
Apart from
time off from blogging I wanted to see what life would be like without my
laptop and my connection to the outside world via the Internet.
I
discovered that I can live without my laptop and the Internet; however my
conclusion is that I can live without but I'd rather not have to do so.
I still
have so much that I would like to write about, during my time off there were days
when I could feel that I was overflowing with ideas for my blog posts.
Last night
I decided I would start blogging again from today; it's not easy as my left
index finger which I rely on is not functioning well, and is becoming inactive.
I should
have made more of an effort learning how to use the Seetech computer in August
instead I chose to write using Dragon voice recognition.
So now I
have a problem because I can not use the laptop like I used to and it is very
frustrating to feel that my index finger won't work that is so frustrating.
There is nothing
worse than sitting in front of my laptop unable to click on any items or to
scroll down or to surf the net or do anything much.
The Seetech
computer worries me, however I will not let fear rule me and I intend to learn
how to use the Seetech computer so I can keep writing and communicating.
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