Toyen.
http://en.wikipedia.org/wiki/Toyen
Yesterday I said I would put this whole situation with the support cushions out of my head until next week.
I wish I could, but I can’t because I can no longer sit with the improvised support structure Richie has constructed around me.
This has worked very well but this last week it has become impossible, for me to sit upright for more than a few minutes.
Richie has adjusted me many times already but within a minute I am hanging to the left, this hurts me alot, it particularly hurts my neck.
That is because it feels like my neck has to stop me totally collapsing to the left; this puts a terrible strain on my right side.
Difficult to put it out of my mind when not having the support cushions has now become a big problem for me.
Doing anything while hanging to the left becomes pretty impossible typing is easier than eating or drinking.
It has been suggested that I contact the local newspapers or TV, sadly I don’t think the local paper or TV would be interested.
They were not interested when we were waiting for so long for a new accessible apartment, and I was stuck indoors on the second floor without a lift.
I was only able to go out if I was carried by a couple of people from the mobility bus, twice a week I spent a few hours at the rehabilitation clinic.
From June 2006 until we moved in May 2007 I was spending most of my time indoors, by the time we got a place with a lift I could not go out alone anymore.
Waiting has become a central theme of my life, I have to wait for everything and I do not have the time, not with a progressive disease.
It really is here and now for me.
4 comments:
You know, at this point what do you have to lose? Someone besides you have to give voice to your suffering. Why must it be this way? Sure much of live is enduring but dammit no one desires to be puppeteered. Each of us has the right to human dignity and their continued incompetence is enough to erode that and one's sense of pride. It is difficult enough having to adjust to impacts of MS without having to endure human indignities disregard and neglect as well.
I say call up the TV, Radio, Magazine any media that will pot a spotlight on their asses to show the human indignities and indifference to peoples suffering. At this point what do you have to lose? Have them come out and see the difficulties your are experinging., why the cushions are important to your daily living. Someone has to care dammit, this can happen to anyone it is not specific or exclusive to a particular group. Shine a light on that crap and let the stink the fan!
Sorry for the rant but this really pisses me off. Kiss-meh-arse idiots.
Hi Rhapsody,
Thanks for your comment I really wish I knew someone who could take up my case and the case of everyiion with a progressive disease.
Love,
Herrad
ahhh Herrad
Thank goodness for the internet - I know it doesn't solve these difficulties and frustrations but it is such a special thing to be able to be connected to you, irrespective of other restrictions.
Thinking of you and Richie.
I don't know what to say..
I am so sorry this has to happen to you. I will say that your voice here.. on the blog touches many and I have the utmost respect and care for you Herrad.
love you♥
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