Quote:
Originally Posted by starfish
Ya know, I would just write down your limitations and how honoring them keeps you healthier and happier. Then I would describe how stressful it is for others to try to coax you to do what you know is unhealthy, and that stress can only add to your declining health.
Then provide the url for the national MS society so that if they really care about you and how to help you, they can take the time to learn about your disease.
Print it out, in multiple copies so you can hand it to people or keep it on word and e-mail it to those who need it.
I might imagine you are trying to put your best foot forward and look your best despite your illness. Its just no fun to have to explain this disease to people, multiple times.
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I've given out the websites for the NMSS and also Multiple Sclerosis Sucks (it's a little easier to understand) to my friends and family. If they want to print it out they can - I'm not going to the expense or trouble to do it for them. I think it's the least they could do...if they are truly interested in me and my disease. But...it's a good suggestion to use for those people you know don't have a computer.
Quite honestly, I don't really care if I look my best anymore. I mean, I don't wallow in my own filth or anything.
I do get up and take a shower/wash my hair everyday but if I'm not going anywhere I don't bother with makeup or fixing my hair. Why bother? It just uses up energy that I need to conserve. If I have somewhere to go (doctor or store) then I do put on makeup and dress appropriately.
I did sort of snap at my sister, though. I know she heard the aggravation in my voice because she ended the conversation soon afterwards.
The way I see it - these people are my family and friends. If they can't be bothered to try and learn a little about my condition then they have no right to make assumptions about me and what I can and cannot do. I mean, I would do it for them...I'd try and educate myself on whatever it was they had so I could offer appropriate help if needed.