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?

I am so sorry this is the situation you have to deal with. I have few friends but those that I allowed to remain my friends know the deal. My family knows the deal. They know they have to slow down if they choose to walk with me, when they start to walk too fast I just tell them I will meet you back at the front of where ever we are. lol It works every time.

They are all aware that if I have to go to a public place that is busy and may cause too much stimulation to my senses, I must take medication for my anxiety first. We had company over spring break, they had 3 children. They completely understood and expected me to disappear to my room when it became too much.

I explain the heat issues, the sensory issues, the mobility problems, and anything else like my anxiety and panic disorders. If they don't understand how it is easier to handle things at my house then I feel sorry for their close-minded ness.

It is hard when others don't get it despite you trying to explain the effect of being out like that has on your well being. I am fortunate to be surrounded by people who understand my limitations and work with it. The people who just couldn't understand or accept that I had to back out on plans last minute are just not part of my circle of friends, which has gotten really small since being diagnosed (surprise, surprise ).

Most of my outings are close to home and is never an all day thing if it doesn't entail going to someone's house. And, I prefer to go to someone's house where I can leave if it gets to be too much. If I am hosting/entertaining at my house, I don't have that option to leave my guests to take a nap or break. Keep in mind, the people's houses that I go to most often are family and friends who understand if I need to leave or need to go lay down and rest (they all have offered and I know where I can go rest if need be). It is very, very rare that I am at someone's house that I don't know well enough.

I am sick, home is my comfort zone, if you can't grasp that? sorry about your luck!

I know. I also know that they're just trying to include me in ordinary everyday things. But that's the thing. For me, ordinary everyday things are different. I just wish they could grasp that notion. Trying to do things that used to be so easy for me really accentuates the fact that I've changed. I simply can't do them anymore. And that makes me sad.

Kitty, I understand completely, I was worn out by the time I got ready to go anywhere or do anything.

Shower and shave? Ya, then it's nap time!

LOL! I always say I can get ready and look presentable but have no energy to go anywhere. Or....I can look like a bag lady and be able to at least walk when we get there!

LOL, walk? I might get hassled for public intoxication if I did that! Most drunks walk a lot better than I can!

My version of "walking" includes my rollator. I try to walk without it at home sometimes and I look like I'm knee-walking drunk!

I guess I'm sort of lucky... My DH plays the gate-keeper to my activities. I'm more the type to do what I really shouldn't be doing and pay for it, rather than take it easy and not get trapped in the middle of the restaurant floor trying to "look casual" as I grasp the backs of stranger's chairs to hold myself upright while I wait for my DH to go and get my wheelchair.

I live in the south though so it's kinda nice-ish that people don't have a concept of personal space, so they don't really get upset that there's a weird lady holding onto their chair and almost tipping them over because she's literally holding herself up. But after a few times of things like that happening, a few public and epic falls and fails, the DH has become the warden and must approve all outside activities before I can attend. Sometimes we still don't agree and sometimes I do still show him up on what all I can do (in a one day only kind of sale), but more times than not attempts to show him up bite me in the butt.

But I also don't have any real friends... I never really have instead of a homebody I was always more of the alone-body. I've never liked to socialize with people, if the boards were meeting people in RL, forget it... I'd never attend a single meeting. No offense... but I just don't like people. I don't hate people, just a general overall dislike for them. The extend of my "friend" network is 2 guys that lived in my uncle's neighborhood and were around my age growing up, that my uncle adopted, my DH, parents, daughter, grandkids, my DH's boss and his subordinate. That's the only people I talk to, or admit as a friends and the 2 childhood friends one I haven't talked to since my brother's wedding ummm.... 4 years ago I think it was? and the other I only just starting talking to again since my daughter is living on one of his properties.

So really the only ones that can get me in trouble is the daughter, and my folks... my dad is a great one for it, we went to the beach a lot 2 years ago, and I was constantly having to drag him back into shore and practically kill myself to do it, I'd be wiped out for days afterwards and then the next week we'd do it all again What can I say though... he bribed me with awesome burgers and ice cream floats. Who could say no?

But if I was in your shoes, I would just be forthright about it. Let them know, hey, I'm a homebody to begin with and with the MS I'm even more comfortable being a homebody. You're always welcome to come and hang out, we can do x or y. have a potluck or what have you. I would love to go hang out somewhere quiet with ya'll but my luggage to carry my meds is at the dry cleaners, I spare you the gory details of what happened inside one day when I couldn't make it to the potty in time.

If they're your friends, they laugh, maybe turn a bit green from their imagination and remember that you never did like to get out much. If they aren't they either run for the hills based upon their imagination or be highly offended that you would even make a joke about such a thing. In which case you can show them the door.