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#1 | ||
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Banned User
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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? |
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#2 | |||
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In Remembrance
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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. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#3 | |||
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Member
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I don't understand blogs, so I've never read one or done one and wouldn't know how to start one.
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Dx RRMS April 1992 Yearly flares from 92 to 11 MS induced seizures 2002 Flare Oct 2011 Flare Dec 2011 Left disabled after 2 previous flares Betaseron '02, Copaxone '12, Tecfidera '13 (allergic reaction to all) No longer taking any MS therapy meds |
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"Thanks for this!" says: | SallyC (12-02-2014) |
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#4 | ||
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Banned User
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#5 | ||
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Member
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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.
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I cannot control my illness, But I can control my wellness. |
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#6 | ||
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Banned User
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Quote:
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#7 | |||
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In Remembrance
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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! ![]()
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. Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz |
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#8 | ||
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Member
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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
![]() ![]() 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" ![]()
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Side Effects: may cause dizziness, drowsiness, bleeding from the brain, heart explosions, alternate realities, brain spasms, and in rare cases temporary symptoms of death may occur. |
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"Thanks for this!" says: | SallyC (12-04-2014) |
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#9 | |||
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Member
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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
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On Tysabri and love it. . |
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"Thanks for this!" says: | Kitty (12-05-2014) |
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#10 | |||
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In Remembrance
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Thanks Natalie. I haven't been there for awhile.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Natalie8 (12-06-2014) |
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