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Day 6
I have slept reasonable, I just had to leave bed early because it was time to go home. It was weird to say goodbye. Henk came to get me with our new VAN. I was happy to see him again and also happy that I could finally lay down again. Still I felt weird as we drove home, some how a bit empty and sad from inside.

Under the volunteers there were some younger people of about my age, with 1 of them I have talked a lot about making website. He namely had made the website of The Red Cross in Weert.
 
Here's the text which I have written as a word of thanks to the volunteers which John has read aloud Friday night (translated from Dutch to English of course):

This was my first holiday with The Red Cross.
Because I have a misunderstood illness and due to this have walked against walls of incomprehension, I was afraid that this would happen here also. I wondered if they would believe me when I'd say 'I am exhausted, I want to rest'.
I really didn't know what to expect.
I also had a double feeling; on one hand I was happy to be out of the house, see a different environment, but on the other hand I feared of incomprehension and disbelief.
The closer the holiday came the more I started to doubt and I was thinking of cancelling it.
The first day I felt alone, despite all the people on board; at home my friend is always with me... I missed him.
And now, now the holiday is over, I again have a double feeling; on one hand I am glad to see my friend again and be together again, but on the other hand I look against the good-byes.
It was so lovely here and everyone was so friendly, there were no walls of disbelief. No, even the opposite.
From you, guests and volunteers, I often heard 'how brave I was', 'how well I handle my disease' and 'that I always smile and am optimistic'.
All those words really did me well.
i often thanked God the past week that He has made this holiday possible for me.
It was a great week, which without the crew, volunteers and guests never wouldn't have succeeded.
Thank you all, you have made me real rich.

How am I doing now?
Meanwhile it's already September 9 now I have finally finished this and put on internet.
In the meantime I again got worse a lot, so much that I am not able anymore to take a bath not even with help and so I again get bed-washes. Fairly spoken I am even not able anymore to brush my teeth every day and this while I have an electric tooth-brush. So now I am again back to almost my old level.
My dietician wants to give me tube-feeding, but my gp first wants to decrease the tramadol because he suspects that this is the cause of not/less eating. It's purpose to leave the tramadol out all the way and then instead take neurontin, I do hope this helps somewhat against the pain. (I will write about how this goes in a different piece, of course also here at 'special moments'. Addition July 2004: see 'painkillers')
Due to not/less eating (liquid food) I of course have lost a lot of weight and so this also is an disadvantage that I now have even more pain at the pressure points of lying down.
Somewhere I wonder when it all stops this whole mess, but I do hope that this relapse is only temporary. I don't know, maybe I just don't WANT to see it???!!

July 16 - 21, 2001

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