Thanks so much for your answers. You were very helpful.I actually did not have much close contact with PWC's but as far as i noticed from internet groups most PWC's are not complainers.or does that depend on the level of illness?I think it could be that i was also complaining more at earlier stgaes but i do not any more as i moved to later stages. What do you think? .
I have no idea, I know no other PWC except through this forum and I haven't interacted with anyone on a personal base yet. (there was an invitation to virtual tea the other day and that made my day!)
I do know some chronically ill people on my homegroup on Ravelry.com, the online knitting community. They don't complain. At all. They sometimes mention hard times they have and then we show support. But never complain.
Some people do complain, all the time. They seem to crave attention. They ask for advice but will not follow up. I stopped replying to them.
I myself stopped complaining the day my doctor threw his hands in the air and sighed: "I have no idea what's wrong with you! You're supposed to have one thing wrong, not five!"
That's the day I realized I have to figure this out for myself. And that I had been an entitled princess, expecting health and knightly doctors.
Nowadays I seldom complain. I did some on my blog but that became a drag. Also, what do you say to a complainer? I, as the complainer, couldn't think of any usefull response.
I do get desperate sometimes. Then I cry. I may tell my online knitter friends how I feel. They say "there, there" and send me a picture of a funny squirrel. This helps. It is enough.
Other times I ask for advice. To which I always listen. There's so much to learn.
The other thing I do is reality checks. Because as a PWC (or any person really) who spends long times in their minds, I often forget what people think is normal.
for example, non-PWC find it no problem to swing by the bakery and get their own food before visiting me. A knitter offered this as a solution when someone came to lunch and I had no "normal food" and was worried because if I went out I wouldn't have energy to meet her. This was quite an eyeopener to me.
So I sometimes do reality checks with my online friends. But without complaining.
Also, I write too long. sorry.
SKIP THIS, just some funny stories:
now let me tell you a brilliant idea I ran by my knitter friends back in 2010:
"hello, I'm on a bit of a sugar rush and am painting the window on the upper floor! Now I need to get on the roof to complete it. The roof slaints and has ceramic tiles. I'll probably be able to stick to it easily but I need some securing for when I do slip.
So I'll just tie a rope around my waist and attach it to the radiator. Just popping online to check that this is sufficient, yes?"
Yeah.... I got shouted at.
now I recognize that state of mind, when I'm a bit hyper my brilliant ideas aren't.
another reality check, from last Spring:
"Hi, it's my mother's birthday and she just emailed me to invite us to dinner tonight. But it's an hour travel away, at night!
I could make it though... but it will send me to bed for the next 7 days."
yeah... no.
It was made clear to me that 7 days of bedridden is not proportionate to a last minute BD dinner.
which didn't prevent me from this, last Fall:
"Hey, my parents celebrate their 45 year anniversary and they asked me about my capacities for travel. I explained I can travel for one hour and then I have to sit for an hour and have tea. If need I can then travel another hour and then I have to roll into a bed.
So now they're planning a trip to Marocco, by train. Because my father loves trains. It will be 12 hours of trains the first days through Europe, then 5 hours every other day in Marocco. Also Marocco has lots of sounds, impulses and unfamiliar foods.
I feel quilty because I don't want to go but it's their anniversary and I should and if I bring my own food perhaps I can make it and at worst it will take me 3-6 months to recover..."
Yeah.... again with the shouting
But I learned my lesson this time. We didn't go. Neither did my parents because they forgot to bring their passports and were denied access to Marocco. They were put back on the ferry to Spain. Where they were denied access because they didn't bring their passports.