Tag: MS

MS Really is Bad

One of the things that helped me come to terms with having MS was that “it’s not the worst thing that could have happened”…I’m beginning to rethink that…MS is pretty darn bad…okay, maybe it isn’t the worst, but it’s up there with the rest of the bad things.  i think that what makes it worse than some other diseases is that the cause is unknown, it’s unknown how it could affect anyone on any given day, the cure is unknown- there are just too many bloody unknowns.

One of the ways that it can affect us is with bladder control.  Some patients may not be able to control their bladders whilst others may not even be able to empty their bladders (no consistency either!!!!) for me, sometimes I pee just because there is a bathroom around – not necessarily because i have to pee, but because there is a bathroom i don’t mind using available.  I never let it get to the point where my bladder is about to buss because if i get to that point, my ass is grass – there’s no holding it for me!

I noticed that every now and again something would happen to me so i said to G, “you ever had to pee, used the bathroom and then u notice after you’re done and u leave the bathroom (mind u) that, “shit!  i have to go again?”  Of course she said no and as usual, we moved on…i chalked it up to one of those things that just happens sometimes i guess.  I subscribe to the MS Society’s monthly publication and 1 day i was reading it and i saw an article on the bladder control issue and it spoke about patients’ not being able to empty their bladders and it hit me, “what the?!?!?! i guess that’s what i’ve been experiencing”  i’d never thought that it was the MS – for once i didn’t blame it and it actually is to blame.  When it happens, it’s only at nite – i drink so much water (i always say, the only things i drink are water and alcohol, i don’t mess with juice and sweet drink and all the other shit out there) that sometimes i have to get up 2 or 3 times to pee at nite – well when i do use the bathroom and get back into bed to go back to sleep, that’s when it give me a nudge and says, “eh eh…we not done yet” so i have to get back out of the bed and head back to the bathroom.

I’ve had conversations with the MS, “i mean, do u really think that it’s necessary to put me thru this????  i mean i have to get out the bed, stumble to the bathroom, pee, stumble back to bed, lie down to start going back to sleep and THEN u decide to let me know that “oh by theway, u’re not done yet” so i have to start the whole bloody process al over AGAIN!!!”  i mean…really?!??!?!  UNNECESSARY walking is not something i ever look forward to; i try to save my walking for when i absolutely must do it and in my book, this situation counts as completely unnecessary and uncalled for.

Don’t get me wrong, i still know that my situation is not the worst (for sure) and maybe MS isn’t the worst, but it sure is damn bad!!

GRRRRRR!!!

I Have MS, It Doesn’t Have ME!!

So I mentioned in my last post that the friend came up to me in the cooler fete and told me that he admired me for not allowing the MS to keep me from having a good time.  I’m limin hard, fetin up a storm (partying), driving (again some say like a bat out of hell, i beg to differ) and livin like i don’t have a degenerative, incurable, neurological disease!  my response to that is that I HAVE TO!!!  I’m taking all the bloody pills and shots (WOOHOO, last nite i threw out all the shots i had left; I can barely remember the last time i injected myself; can’t wait for the new treatment to start), exercizing and managing the disease as best as I possibly can but I ABSOLUTELY REFUSE to stop doing shit that makes me happy. 

I’ve mentioned before that driving is the only time that i feel like I’m on level playing field with everyone else…there’s no stiffness, foot dragging, needing to sit, blah blah blah; I feel totally normal.  I’m not going to stop driving jes because something MIGHT happen at some point.  Is that stupid?  some may think so but F*CK IT; I’m not giving it up. 

Sometimes, if someone asks me in shock/horror if I’m doing something/going somewhere alone, I feel a little resentful (i know it’s genuine concern and I really do appreciate it), but somewhere deep inside, i want to say that i’m not trying to be a burden to anyone and there are some things that I CAN/WILL do on my own. 

  • Am i going to go to a fete by myself? NO!
  • Will I go shopping alone? Absolutely – I’m not much of a shopper, but I can spend hours in my favorite store, but as soon as shit starts feeling weird and going wrong, I am out of there!
 I’ve said it before, my hero days are over; i know my limitations…I’m not going to willingly put myself in a situation that I know i won’t be able to handle.

I Have MS, It Doesn't Have ME!!

So I mentioned in my last post that the friend came up to me in the cooler fete and told me that he admired me for not allowing the MS to keep me from having a good time.  I’m limin hard, fetin up a storm (partying), driving (again some say like a bat out of hell, i beg to differ) and livin like i don’t have a degenerative, incurable, neurological disease!  my response to that is that I HAVE TO!!!  I’m taking all the bloody pills and shots (WOOHOO, last nite i threw out all the shots i had left; I can barely remember the last time i injected myself; can’t wait for the new treatment to start), exercizing and managing the disease as best as I possibly can but I ABSOLUTELY REFUSE to stop doing shit that makes me happy. 

I’ve mentioned before that driving is the only time that i feel like I’m on level playing field with everyone else…there’s no stiffness, foot dragging, needing to sit, blah blah blah; I feel totally normal.  I’m not going to stop driving jes because something MIGHT happen at some point.  Is that stupid?  some may think so but F*CK IT; I’m not giving it up. 

Sometimes, if someone asks me in shock/horror if I’m doing something/going somewhere alone, I feel a little resentful (i know it’s genuine concern and I really do appreciate it), but somewhere deep inside, i want to say that i’m not trying to be a burden to anyone and there are some things that I CAN/WILL do on my own. 

  • Am i going to go to a fete by myself? NO!
  • Will I go shopping alone? Absolutely – I’m not much of a shopper, but I can spend hours in my favorite store, but as soon as shit starts feeling weird and going wrong, I am out of there!
 I’ve said it before, my hero days are over; i know my limitations…I’m not going to willingly put myself in a situation that I know i won’t be able to handle.
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