Sorry for the formatting...
The interesting thing that happens with MS is this...
1) You are diagnosed, and sometimes this takes years.
2) People say they are _so_ sorry, as if you are now about to die, while you meet other people who assure you that you'll be ok.
3) Time passes. Now different things can occur.
a) People seem to "forget."
b) People ask "How ARE you?" and you know they just want to know how
your MS is.
c) People compare you to others with MS, and can tell you how person x
is just fine compared to person y, who has trouble walking, and thus
is judged to have horrible MS.
d) People keep pestering you - use the wheelchair; the walker looks so
difficult. Don't push yourself. Are you sure you can handle a, b,
or c?
What to do?
1) Just diagnosed. At least now you know it's not all in your head.
2) You really are ok. Listen to the people who tell you that. No matter what happens, it will be ok, even if it's definitely not what you want.
3) a) People are probably "afraid" to ask. They want you to continue to
live your life. The rare person will realize they can ask how
you're doing occasionally - knowing how often to ask is a gift - I
haven't figured out how the rare person knows - they just do.
b) It's kind of fun to answer "How ARE you?" with something totally
unrelated to MS, like "I have had enough of my cat, dog, and
guinea pig :)
c) Handle this the appropriate way, by explaining the differences in
MS depending on the person. Alternative: if you are person y,
tell them you do have horrible MS - and suggest they clean your
house and bring you dinner once a week.
d) The pestering people who want you to use a wheelchair, etc. They
do have good intentions gone wrong. Explain to them, again and
again and again and again... why you do what you do. Alternative:
tell them you are aiming to slither on the ground like a snake
at some point. Using a wheelchair will make this impossible.
Just speaking for myself, I want people to occasionally ask how I am. I'd like them to be asking about all of me. If they just want to know about my MS, I wish they would specify that. I wish people didn't compare me to others with MS, but that's what people do. My MS is unique - so is everyone's MS - it's a strange disease! I'm not sure how to handle the pestering people. I guess I'd ask God to give me the patience to accept them as people who won't change.
So yes, I'm ok. I wonder if everyone else is.
Live. Laugh. Love.
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