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Old 05-09-2016, 03:07 PM #1
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Kitty Kitty is offline
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Join Date: Jan 2008
Location: Deep South
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15 yr Member
Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Wink Explaining MS (and other Fairy Tales)

Let me start by saying I don't intend this to be a rant.....or a complaint session. And I love my family more than life itself.

But how do you explain an illness that you barely understand yourself? One that changes daily so that nothing seems familiar?

And how do you get across to well-meaning friends and family that you're NOT a hermit and you really do enjoy being a homebody? I have ALWAYS been a homebody. Always.......pre-MS always. If I had the choice to stay at home or go to a movie I always chose to stay home.

Apparently word around town is that I would be SO MUCH happier if I "got out more" and "busied myself" with various hobbies, etc. Funny.....my opinion was not considered in this poll.

Let me explain what a day away from home is like for me. First, there's the preparation step.......getting a change of clothes (or two depending on how long the outing is), packing my medication and taking extra just in case. I have learned the hard way that "just in case" usually always happens. To me anyway. If I am given the luxury of a day's notice then I have to take great care in what I eat the day/evening before. Anyone who has "bathroom issues" knows exactly what I mean. If I know where I'll be going I try to make sure it's handicapped accessible. I know every public building/establishment is supposed to be handicapped accessible but I have found some to be laughably non-compliant. And I don't know how many ways to say that my walker will NOT roll on gravel. And even if it could I can't walk on it!

If it's hot or sunny or BOTH I can't participate in outdoor activities. Not even for a minute. Not even for one round of miniature golf. Nothing. I'm not being "a girl" about anything.....not afraid of bugs or dirt. I used to love backyard bar-b-ques and making homemade ice cream on a summer night. I miss those things but it's just not in the cards for me anymore. Why do people think I don't or didn't enjoy those things? I have to find things that I can do and enjoy doing. And while it might not seem exciting to you it's wonderful for me. If I can manage to do something without causing unwanted side effects then I'm doing it!

And let's not forget the stress knowing that you're going to be away from your comfort zone can cause. All the familiar comforts of home are gone. That causes major stress for me. I'm always scared I'll forget something critical. I know most things I will need are sold at a store and unless I'm in a space capsule these stores are readily available. Still........

Staying home and having company over is NOT hard for me. I prefer it! Really....cross my heart. That's why I suggest it every time someone is trying to decide what to do. Please....come to my house. I have coffee, cookies, Cokes, ice cream, nearly everything you could think of or want. Believe me.....if it was too hard for me I would not be offering my home to groups of friends and family.

I don't want to hurt anybody's feelings so after I've suggested staying home at my house once I don't suggest it again.

What does everyone else do to try and get friends and family to cater to your wishes for at least this situation?
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