Taking It Out Of Me.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

The last couple of days have really taken it out of me, especially yesterday at the hospital.

It was pretty awful lying there, with three doctors and two nurses trying to insert a new catheter into my bladder.

It was very painful, although not as painful as it could have been, but luckily I don't feel quite as much because of my paralysis.

What I did feel was not pleasant, what helps me enormously is being able to distance myself from what is happening.

I'm glad I'm able to shut myself off from what is going on when I don't like what is happening.

This piece is going to be no longer than this because I'm still pretty tired after yesterday's visit to the hospital.

Tomorrow is another day, when I hope to be feeling better, I shall place this on my blog together with another excellent piece of artwork by Roberto Matta.

Realistic Optimism.

Roberto Matta

http://en.wikipedia.org/wiki/Roberto_Matta.

Today the hot weather has been replaced by much cooler weather, which makes it more bearable for me.

Before I went to sleep last night I was thinking about how strange it is to feel my body becoming gradually more paralysed.

What I find difficult to handle is all the pain that goes with it, why does it have to be painful, isn't it enough that my limbs do not function.

Ever since I could no longer walk at all in April 2007, I could not understand why my legs hurt so much when they could no longer do anything.

Thinking about it I realised that people who are deaf are often plagued by horrible noises in ears.

The other thing I heard was that amputees still feel their missing limbs, which must be odd feeling your leg after it has been amputated.

I'm sure many people would agree with me that it is rotten, to experience such discomfort and pain once one becomes severely handicapped.

it is strange that this happens, I wish that I did not have to feel pain in my legs all the way up to my midriff.

Now that my arms are losing functionality, I am experiencing a lot of pain and discomfort in my arms too.

My arms get cramped up tightly, this happens spontaneously as well as any time that I laugh, yawn, cough, sneeze, then it hurts a lot until the tension eases again.

When I wake up in the morning that is the first thing that happens as soon as I am conscious, and it takes quite a while for the arms to feel better again.

Being an severely handicapped as I am now, it feels like I am daily witnessing my constant steady decline which will result in my death I think in the near future.

I hope it isn't for some time yet as I would like to live a bit longer, in 2010 when I had survived two years in bed with a pressure sore and could sit in my wheelchair again it made me feel quite different about being alive.

Because of this wonderful development I was no longer depressed, pessimistic and feeling like I did not have long to live, I wanted to live for at least another five years.

Since my arms had deteriorated so rapidly from the beginning of this year I'm having to reassess my situation.

I still want to live as long as possible but realistically I feel it may not be as long as I want,I am going to I'm going to have to be realistically optimistic.

Time To Be Proactive.

Laurie Lipton.

http://www.laurielipton.com/bio/

Today I had an appointment with Maurits, my occupational therapist and Frans, from RTD het Dorp, to give his second opinion, whether Seetech, the software operated by eye movement was justifiable for me.

 I saw Frans once before in February, when he dominated the room, loomed large over me, he stood just behind me, almost shouting in my ear.

Patronising me in a bellowing voice, not listening for a second, to why I needed what I needed, if he had he would have understood that in February I needed Seetech.

It would have been good to have been able to learn how to use it, before my index finger finally stops functioning; which is happening now.

Today Frans tried to patronise me again, started lecturing me again, after awhile I couldn’t handle sitting there having him tell me what I could do and what I needed.

So I told him that I knew exactly .how my condition was, I could feel only too well how my arms were getting very heavy, difficult to move, that I recognised paralysis was happening

Basically that I needed the Seetech software now, Richie backed me up saying that it was time that I got what I needed on time.

Richie said that there have been too many aids given too late that I could not use, that were no longer useful as my MS had progressed again, he said it was time to be proactive.

After that Frans finally got down to business writing down all the things I had tried, that he need to use in his second opinion backing up my application for Seetech.