is it just me, and am I just obsessing over this ms.?I think about it several times a day,with either pain or new info or drs.Is this just part of it ,I seem to be in a constant stage of trying to fix it .Or is just mentally beating me up?urrrgghhh!
thinking about ms.: is it just me, and am... - My MSAA Community
thinking about ms.
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pamgarner
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You're not alone in that obessession. I'm always on the look out for new information.
It's on my mind a lot as well. Stupid MS.
glad it is not just my stupid brain thanks
I was just talking about this with my daughter, who has CMT. There isn’t a day that goes by that I don’t think at least briefly about it. Some days, it’s just a momentary thing, but on bad days, I sure spend more time thinking about it. I wonder if people with other chronic conditions feel the same.
I am sure it is with ALL chronic diseases,my hubby and I are moving his 82 year old mother back home today from hospital rehab,in the rain,glad she is coming home but I am sure ms.will kick me in the rear end after this is over.how could you not think of this ms thing?
Yes my Sister it is normal, we all do it to some degree. Try to have those thoughts be constructive not just doom an gloom. What can you do to make your life better. Not perfect and cured, but what you have something that you can survive with. I think we all live to a degree with an ms obsession, the trick is not to let that obsession eat you. Work at controlling it and guiding it to where you want to be, and that is to living a life fully that you can be content with,
thanks, royce..I am still making it in life but at times,it is soooo hard and tiring
understood, you just have to try & then accept what you can
You’re certainly not alone, pamgarner. I was the same way for about eighteen months after my diagnosis in 2016. The whole MS nightmare was just about driving me plumb-loco! In hindsight...it was like I lived with my head in the MS sand for almost two years ...that’s when I said, “enough is enough!...time is too precious to give it all to this disease!” Since then, MS has been put more into place in the background of my life...rather than overshadowing it. We also understand that we have physical changes in our brains, are trying to manage an unpredictable, chronic disease and have to learn life now with a disability...all these may cause us to ruminate, or “chew the cud”, so-to-speak, too...thank you for this thought-provoking post, blessings! 🤗🌺
you hit the nail on the head,learning to live with the disability,sometimes it is difficult,of course
Agree...understandably, level of disability is a major factor...and should be viewed on a case by case situation...we just try to do the best we can with what we have today...what else is there? A dear friend of mine said this to me...she has terminal MS and in a wheelchair...she said, “time is just flying by...try to make it count, friend.” 🌺
MS has a way of reminding you it’s there 😞
NO KIDDING! I am trying to figure out how to beat that ,I'll figure it out
It really does! Pam you are not alone. I feel the same way and somehow i am always reminded.
it does have a way of reminding you,I need a class, how to live with a chronic disease.
It really does. Even when I forget for a brief while i am always reminded by something. Last Saturday, i was sitting in the car waiting for my mom to come out of the pharmacy. My mom was parked in handicap (she has trouble walking, knee problems) and i was sitting in passenger seat and an elderly woman comes up to my Moms vehicle and asked me what i was doing being that i look young and healthy. She thought i was taking up a handicap spot when i was not really handicap. So i told her my mom has the sign and i also have ms and then she said oh im sorry i do too. I was so upset that i began crying right after just thinking about what happened and that i am somehow always reminded of the ms. I have made a lot of progress since july when i was first diagnosed in terms of my anxiety levels. I am doing much better than i was then but its definitely not easy. Blessings to you. Hope you have a nice week ahead.
I think what really gets me,life has a way of reminding you. I am grateful I am still walking with assistance and still driving.It is just EVERYTHING is so hard,instead of 1 step it is 10.I feel guilty complaining,I have found many shortcuts,that I wouldn't have if I didn't have this disease
You are not alone. Because MS is ever-present, because it is unpredictable, it becomes impossible to ignore. I don't obsess over it simply because if I did, it would rule my life. That's unacceptable to me. But, when I struggle to get up the hill after going to the mailbox, or go down the ramp because my feet won't flex going down the stairs, there is always a momentary flicker of awareness, that this is MS affecting my life negatively.
I volunteer two mornings a week in an elementary classroom close to home. The other day the school had a fire drill so I had to evacuate with everyone else. I was my usual slow and klutzy self going down the steps to the playground, couldn't keep up with everyone else, and felt my legs beginning to tremble as we stood waiting for the all clear. It was not a very cold day, somewhere in the low 40s, but even though I had grabbed my jacket (most teachers and children had not) I grew very cold. On the way back, two of the children wanted to hold hands with me, so they noticed. We were the last ones back in. Was I aware of MS? oh, yes, indeed. If the alarm had been real, I would have been a danger to everyone else as I struggled to get down those steps.
how very scary that was, even though it was just a drill!good to know I am not alone how hard everything is to do
On one level, untangling what is age* and what is MS interests me. On another, it creates a deep sense of loss as well as grief for abilities that are vanished (and my failure to appreciate them when they were still functional). This may not be the forum for these thoughts but I have only this one life to live. I want to live it in the fullest way I can despite my limitations and imperfections. For me, it is best to focus on what I love (being in a classroom, appreciating people I know,tending plants and animals, living my rural life) and most of the time, suppressing the dismay at my slow decline.
* Because I am six months shy of 80 years, It is probably easier to accept my limitations. Nearly everyone my age has some. If I were in my 20s or 30s I suspect I would be out raging at the moon. But at 80, there is always an awareness that life (in all its wonder and beauty) is finite. I want to marvel at and savor life until my last breath.
don't let it run your life to the point of no return for there is still life out there ...i know yes i would love to not have it but again don't let it destroy you ...
thank you, at times I think it has the opportunity to sneak into our thinking,like when we make the bed and throw yourself on it because we are exhausted.Just part of it,I guess
Me, too. Of course when I check my inbox most messages are from some MS thing or another. If I didn't have MS my inbox would be empty. However I learn from most of these messages. Some have things that really make me think and some not so much.
When I'm away from a computer my tiredness makes me remember most of all so it does bring it uppermost in my mind. If for some reason I'm not as tired it's my lost words that kick it up in my mind.
With all these reminders, how can we not be somewhat obsessed with it???
You are not alone. My MS "friend" reminds me everyday that she is with me. She makes my right leg go crazy everyday, but I deal with her and keep moving? 🤪
that is all we can do is keep moving!
just remember.. ms is something you have, it is NOT who you are ..
I am reminded often but I think I'm just used to it.
most times I am too,I was just SICK of it.
After 40 years with MS, it doesn`t get any better. Just steadily worse.
All of it
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