You are not selfish!

April 24, 2008 at 8:16 pm

Hi Chrissy

If I could say one thing – none of you are selfish for wanting 8-10 hours of sleep a night! We have gotten ourselves into a place as a society where we think that we should not sleep more than 6 hours (so much to get done….!). We forget that people actually NEED 8 hours to function effectively.

This disease is incidious. Alot of the time we don’t really look “ill” (if you can get beyond the transportation assistance!:rolleyes: ) so people – even your nearest and dearest don’t see it. All they see is someone who spends lots of time in bed, and can’t do things with them, or for them. It makes me very frustrated and sometimes I feel like they don’t care – but that isn’t really right – they just don’t necessarily see “sick”. (and I don’t like that term, either – I just can’t think of another one that encapsulates the issue.)

My husband is outstanding – I have had CIDP for close to 12 years now; and he supports me to no end; but even he has his times where I know he is frustrated that I can’t do things – I back away from socialising because it wears me out. Our friends tend to wait for me to initiate things now – they invite us, but might only get him!

All I can say is that extra doses of patience and repeated kind or humorous reminders may be required. Our relationships are hard enough without the extra demands that a chronic illness puts on it. Be gentle with each other. And sleep! I know that without it, I am pretty useless – so I imagine you all feel the same.

Take care