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I regularly get emails with questions like ‘are you always in bed’ or ‘can you sit’. Apparently I didn’t explain it well enough so I want to try it here again.

I always lay 24 hours a day horizontally in bed and this since 1998. Everything I do I do laying down, because I can’t sit not even with the head part at 10˚ or more, it has to be totally flat. So I watch laying flat TV, computer laying flat, eat laying flat and pee laying flat. Crapping is the only thing I do sitting, at the toilet or the commode chair depending on how I feel at that moment. I have tried this while laying down on a pan, but this hurts too much. Here in the Netherlands you have a pan (I don’t know if this is the correct word in English), which is used in hospitals for people who can’t move or sit. A pan is too hard and too cold and it can be full too quick. You will now probably be thinking that this isn’t possible, but really it is… it happened to me once that the pan overflooded. I had really bad diarrhoea (an allergic reaction to something) and it just came up between my legs… yak! Fortunately we had put a napkin beneath it otherwise the whole bed would be full of it. I also tried diapers, but I just can’t do it in this although I want to because I else have to sit. If I have to go the toilet I always wear my neck brace, so that my head stays on my neck and I have a bit less pain in my neck. I also hold myself at the elbow rest of my commode chair or the handles on the toilet so that I can’t fall. If even this isn’t possible Henk comes sit in front of me on his knees, so that I can lean over him… sweet, isn’t it? Who does something like this nowadays. I have often so bad constipation that my rectum has to be emptied with a little spoon. Yes you read it correctly… with a little spoon the crap is taken out. The first time a stand in GP did it. Henk and I think it was just best for him, because he starting telling me that I had to come out of bed and move… so it was his deserved reward. Now my help does it, she offered it herself… yes, I am surrounded by real nice people. There aren’t much people anymore there for me, the most have let me down, but those I still have are really nice and worth double. I have tremendous help and support from Henk, my mother, my help and my ‘grandfather’. He isn’t my grandfather by blood, but we sort of adopted each other (see 'Special moments - Boat trip with The Red Cross'). The other people and my family have let me down, I even haven’t seen or heard of my 2 sisters for years now not even a birthday card! Once in a while I get a nice card from one aunt. Henk has sometimes contact with his mother by telephone, but she sadly still doesn’t understand it at all and her opinion is that you have to put yourself over it. Furthermore I of course get a lot of support from the once who sent me a nice email after reading my site, which really enjoys me and I’m grateful for… so hereby thank you very much!! I did get pretty much contact with other PWC’s this way through the internet.

I have 3 good, nice ME-friends who I know now for years (personally or just by mail and telephone) which I want to name here separately; Linda, Joyce and Domie thank you!!!

I lay in the living room on a hospital bed which is electrical adjustable by fingertip control. Of course I can adjust it in height, but also the legs- and head part is electrical adjustable. The head part of course also stays flat because I can’t sit. If the head part goes up a bit (that my help for example pushes the wrong button, luckily everybody now knows which button to use) I get terrible pain in my back, get really really sick and it gets black before my eyes. I think you can imagine that I am glad that I have constipation so that I don’t have to go to the toilet too often. Before using lactulose-syrup I only had to go to the toilet once a month. Now using this syrup I have to go about twice a week. Due to heavy constipation I also have regularly diarrhoea. This is false diarrhoea; this is caused by constipation and the faeces behind this turns into diarrhoea because it can’t leave and so it actually starts to rotten (that’s way it stinks so terrible).

Compared to 2 years ago as I started writing ‘my story’ I still have the same symptoms. Besides 2-3 symptoms I have all symptoms of the symptom list. My mean complaints are: exhaustion, total muscle weakness, epileptic seizures, spasm, paralysis, neuralgic pains, awareness descending till almost coma, headache, sore throat, memory disorders, sleep disorders, allergies (for food and chemicals), dizziness, nausea, IBS etc.
I hope that it is now a bit more clearer how I live and spent the day.

March 2002

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