what is life like with MS?

[catasawrus]

hi im catasawrus. I got my dx about 18 months ago, originally lack of sensation in feet and legs. now my main presentations are chronic migraine and severe fatigue. my last attack of fatigue lasted 5 weeks and im struggling, but still going, to universtity, i went back last week.

i spent two weeks bed ridden and during this time i was woundering and reimagining what i think my life will look life with MS in the equation. (this is my first major exhasibation)

i thought a better way to get a picture was to invite others to tell me a bit about their story, if they are comfortable. im not really that interested in medications and treatment i want to know what the journey has been like for other ppl

:D

[catasawrus]

thanks guys for sharing your stories. im sure it wasnt just me who found them helful :)

[sllowe]

bump

[Karen99]

Briefly my story:  Spent almost two years with what I thought was rheumatological in nature.  Then I had color saturation problems.  Later, optic neuritis.  Then, wham I was having double vision with numbness down the left side of my body.  That got me into a neurologist.  Got dx of MS in 2001.  That "attack" lasted acutely for at least 4 months, but probably more like 6 months. The couch and TV were my constant companions at that time.  It beat the crud out of me.  I saw almost full improvement after a year but the fatigue and pain stick with me still.

Each and every day I know I have MS.  Most times I can do what I want, when I want.  Other days I can be too tired to do much at all,  but can get through the necessities of life.  My life is different for sure but I engage it full on when I can.

Yesterday I went to an amusement park with my family.  I went on rides with incredible g-forces, spun upside down, whipped around corners and plunged down at rapid speed.  I feel just fine today.  Tomorrow or the next week I could find that I need to stay in the house with little physical exertion.  I might take a pain pill for a couple of days, then not have to for weeks.  Next week I could be taking a significant hike with such vigor that it would shame people half my age. 6 months from now I may be in a "low" for 3 weeks.  

Over the years I have changed. How much of it is due directly to MS?  I'm not sure.  My memory lacks at times, I won't/or can't multi task, and I have a low tolerance for overt drama or BS.  

The only constant in MS is that there is no constant.  Everyone is different in their course.

Take especially good care of yourself during a flare.  Talk nice to yourself too.  I was very hard on myself in the beginning.  You will find your way.

Oh yeah, my husband of 10 years divorced me.  He didn't like the new me.  A younger and better man came into my life!  

[sllowe]

Well hello there!

I'm so sorry you are in a flare.  I'll share my course with you so far.  

I've not had a major attack since the 1st one.  My 1st one lasted a little over 3 months and though I had to develop some coping mechanisms I really thought that if my inability to walk, talk, react, think, etc. is never going to return daily life is sure going to be difficult.

It was all I could do to get through each moment of the day, and I would pray every night or whatever time of day it was before I couldn't hold my head up any longer that in the a.m. I would be better. I woke each day the same. Those months felt like a lifetime.  Finally, I started feeling some improvement, though it was gradual, it was all I needed - just a small break in "something."  

Now, I'm the same, but not the same physically or mentally. Have had a hard time adjusting to that - it's a daily battle, but what's more important is those glimmers of your old self that come an go. These are motivational to me.  So, if I get a moment where I'm quite literate (ha/ha -they are far inbetween) or I over due it and make it though w/out too much issue, I take it to the bank.  Know what I mean?

I sure hope this flare doesn't last long for you.  And, I wish you some imporvement so you can feel those "glimmers" of hope that I've cherished myself...

thank you for joining us!

Shorty1969 - Have you come by our way before? A big welcome to you! You keep pushing and if you've not done so already - post yourself on a seperate thread so we can all say hello ...thanks for coming along! If I'm not mistaken, Devics such a mimic to MS....

see you both around!
-shell

[shorty1969]

Hi, my name is tania and i have a form of ms, it`s called devic`s syndrome but i still go through all the same horrible body functions {sometimes lack of} that ms sufferers go through an it *****. I don`t like to get out of bed most days as i don`t know what **** my body is going to put me through 4 that day, some times i just don`t get up but i push myself every day so i can get things done. I have my 15yr old son who lives with me an he`s good at getting me coffees with my pills in bed but slack on housework.He`s cooking tea tonite cause i had a horrible uncomfortable lumber puncture 2 days ago. but usually , i do everything until i start falling over or dropping things, then he takes over. i would not have thought 20yrs ago that i would be so useless in doing the most simple things. i hope u would like to write to me. it would be great. luv tania