[Lumia_black]

As my MS starts to be un-hideable, friends and such start to ask me about it and wonder why some days I am seeming fine, then using a cane'rollator at other times I tell them I have MS and they don't know what that is unless I sit and explain, in which I HATE doing. If someone has cancer, people know that and they 'get' why you are the way you are, someone with a broken leg using a walker...people get that, they can see it, but MS I have to explain to people why I don't feel like going someplace or just want to be alone with know apparent reason in their eyes...it's frustrating.

So....I've been thinking for the last year on if to write a blog about MS and my life with it and what it is doing to me. Its the best way I can think to get my friends and others to understand where I am coming from and to just do my part to make MS more aware in everyones eyes. I hate talking about it and it is why I keep putting this blog idea off for so long....but I think it's time, because I'm not getting any better and my ugly symptoms are not easy to hide any more.

The thing is I dont want to seem like I am wanting pity, feel sorry for self or attention grabbing....I just want to explain what I have and have people be ok with it and don't be afraid of me cause I AM still the same person as before....just got a large burden to deal with. Someone told me it wouldnt be a good idea, becasue I'd just lokk like I am fishing for attention, or boo hoo feel bad for me ect ect...

So any of you ever or have blogged about your MS with intent to just explain people what it is and get it off your chest?

[SallyC]

I have never blogged about it, but many have. It's a good outlet and a journal
for you. I think if you start out saying the things you said above, People would
get it and not think you were looking for sympathy. When you have one going,
give us your link. I/We read others blogs.

[KittyLady]

I don't understand blogs, so I've never read one or done one and wouldn't know how to start one.

[Lumia_black]

Originally Posted by KittyLady

I don't understand blogs, so I've never read one or done one and wouldn't know how to start one.

I describe it as an 'Online diary' that anyone can read on the world wide web and they can write a short comment if they want, on any of your entries.

[BBS1951]

I tell friends it's a neurological disease that short circuits messages to my limbs making it feel like I have 20 pound weights in my legs, arms and hands, and ants biting me all around my body. They get that.

[Lumia_black]

Originally Posted by BBS1951

I tell friends it's a neurological disease that short circuits messages to my limbs making it feel like I have 20 pound weights in my legs, arms and hands, and ants biting me all around my body. They get that.

LOL and explaining the other stuff like "why are you using a cane? sore foot? oh and getting cought with protective underwear and in your back pack and Why I was seen mowing my lawn and not wanting to go out at night with a friend cause "I don't feel up to it" on the same day. I've made many a friend mad I tellya.

[Frog42]

Trying to explain MS to people can be exhausting. They don't get that you don't feel the same every day. They don't understand that MS can be different for everyone they meet who has it.

They don't understand why I need a cane to walk but someone else they know who has it can walk just fine.

I want to take my cane and knock them over the head with it sometimes!

[Starznight]

I think a blog could be an excellent idea. If you're worried about coming off whiny or "boo-hoping", it really depends on how you present it. There are plenty of blogs from people without major issues, or even what the half of us would think of as a minor issue who come off whiny enough... "Like omg I totally ran out of tampon and had to use a pad and with my brand new Gucci jean too" yeah somehow not thinking that's how you'll come off. But there are just so many blogs like that which might be why your friend advised against it.

I do understand the frustration though, and even my husband who goes to the doctor with me, has done research and is in general an understanding soul, still questions at times why I can do X today but not again for weeks, or if I do Y, I can't do B, but A and C are still okay. And still seems to think that if I just "take it easy" I'll be fine and my bad days are brought on entirely by my overdoing things.

You can educate till you're blue in the face, even some (at times many!) doctors and nurses have issues understanding, so it's not really the ignorance of the masses, it really is just the nature of the disease itself.

So when friends question me, not that I have a bunch thanks to this combined with general anti-social preference, I use humor mostly to deal with it. They get told once the generic definition of MS, neurological disorder that affects the central nervous system and are free to google it.... From there the humor/sarcasm switch gets flipped to the on position and duct taped.

Excuses for not hanging out the night before.... "My immune system ate all traces of your existence from my brain last night, but thankfully regurgitated it this morning." ... Using a cane today but not yesterday... "I'm in training for a three-legged race." Forced into crutches and braces for a time... "Let me tell you, never borrow some eggs from the Easter Bunny, when he says he'll collect with interest....." In a wheelchair... "Well Y'know when dead turtles are screaming past you hollering 'slower traffic keep right!'"..... Popping pills at lunch... "Skittles! Always gotta have dessert before a meal" Undergarments "Omg! You haven't heard the bustle was back in fashion, these here are great for giving the "Rembrandt" curves (eyebrow wiggle/ sexy pose) and sooo much cheaper than the ones from Victoria's. I always carry a spare since who knows what could happen with a body like this" well you get the idea.

[Natalie8]

There is a great blog by a guy named Marc called Wheelchair Kamikaze. He tells it like it is, warts and all. You should check it out.

http://www.wheelchairkamikaze.com/?m=1

[SallyC]

Thanks Natalie. I haven't been there for awhile.