What's the one thing you struggle with......most?

[supermum_ms]

Hey guys and dolls,

I know a lot of us have way toooooooooo much on our plates, but we take it all and still laugh and smile but i know you have that one thing, little or big that just seems that much harder than everything else to deal with. I can handle most anything but the one thing that drives me mental lol and it's not by a long shot the most problematic, it's just so much harder for some reason to ignore.

For me, my something is being a bobble head, my blasted head never stops moving no, no, no repeated none stop. I'm not sure if its harder because its a tremor i don't deal with it all the time, it's not one of my everyday's, so maybe i don't get time to get use to it before it stops again but when it comes back, in the beginning of those first days, golly it really drives me nutts!  

What is yours?

Cheers.............JJ

[NormanG22]

I would have to go with mobility limitations and loss of balance really top my list followed right up by the lower back pain and fatigue.  Some days these issues seem to have a contest to see which one can be on top of the list for being the biggest pain for the day.

Norm

[ValleyJim]

I have to say that my top three are cognition - my wife says she is losing the person that she married :( , pain - constant but varies in intensity from day to day, hour to hour, minute to minute many times, and the fatigue.  I just had an appointment with a new neuro and we talked about the fatigue.  I have been mentally fatigued before, and physically fatigued, but neither of them even comes close to the type or intensity of fatigue that I have now.  

[debgen]

For me mobility problems are the biggest struggle. It has greatly impaired my life.
:(  Deb

[PastorDan]

Oh, dear bobble headed string puppet friend from the otber side of the world, we.could do a waltz together.  I think LauraLu made reference to a specialized sport known as "air surfing," during which a participant leans, tilts, raises & lowers limbs, head, etc., as needed to keep feet on a flior that seems perfectly solid and stable to the audience.   Self conscious?  You should go places with me!  Oh, wait: maybe we should all go!

[PastorDan]

Walking left sided?  Oh, never mind!  Let me revisit those cognition/confusion things!
;-)

[Wobbly]

walking, left sided weakness, fatigue... confusion... that's about my worse part..

[terrics]

Is the pain in your neck from MS?  In many ways I am not very informed.
What is the reason MS causes a pian in your neck?

[Cann1980]

The unknown.

[daveMS007]

Hello my name is dave . I've had MS for about 8 yrs now. I can do most things but the painnnnnn in my neck is the worst. The base of my skull to the bottom of my neck is where it is most centered. So as you can see pain is my daily endeavor. I take 3200 mg of gabapentin per day sounds like a lot but it just keeps me from screaming that's 4 800 mg pills a day until they think of something better. WOW huh that's what I think of the medical profession . So have a fantastic day..... this is dave east see ya.

[Jacksmom516]

For me it is the loss of mobility -  So many things I want to do that I am now limited in.  and along with Kyle the awareness that it is only going to get worse no matter what I do!

[kwarendorf]

The awarness that my abilities are being slowly, but surely, ereoded.

Kyle

[Joliona]

For me its the grief and loss. I have lost so much. Both in reality and in potential.

[doublevision1]

Worst for me, currently: relentless neuropathic pain, followed closely by relentless fatigue.

Worst for me over the entire course of my disease, so far: 24/7 severe double vision, followed closely by a short but excruciating bout of ON.  Both symptoms currently in remission, thank god.

[terrics]

I see this is a very informative site and I appreciate that. I need the info so that I can keep my thinking straight.  Being diagnosed with MS and then being undiagnosed has left me hanging. Support is good.  Even though some symptoms (MS or something else) are getting worse it is nice to know that there are people here that understand how the symptoms mess with daily life.

[immisceo]

Okay, I'm going to switch it up a little. What I struggle with most?

Head games.

The physical (which for me has been mild) is not day to day. The mental? Heck yeah. Getting lost walking on a road I've been down 1000 times? Scary. Will I ever know if it's from MS? Possibly not. Can I predict that today's the day I get lost and manage to synchronise that with forgetting my mobile? Nope. And that's scary.

Yes, that's happened. No, it wan't pretty. I freaked.

I freaked because in the litany of things I was told to look out for, I wasn't told I'd need to leave mental breadcrumbs everywhere. I was looking out for the mobility issues and fatigue that haven't yet come.

I've begun to adapt. Phone apps that make lists or pre-store maps or hold photos I can point to are what I depend on for psychological back-up when I get out and about. When I remember to bring it...

And in your early thirties it's an identity loss as well. I plan for my day like I deal with senility, because essentially I do.

[supermum_ms]

Okay confused, maybe i'm slow on the uptake but why would tremors cause someone to be self conscious and or emotional stress?  I believe we are each perfect (for want of a better word) no matter what the outside packaging looks like.  Its probably not possible for me to think less of my self because of the tremors, lol remember I walk like a string puppet, slurr/stutter when i talk, shake non stop and if i'm not self conscious yet, it's probably not ever going to happen.

DH and i definitely think i struggle to gain weight because my metabolism is switched onto over drive, burning calories faster than normal and it's probably in part because i never stop moving, though i would of thought it was more likely to burn up physical energy, than emotional reserves.

oh I think i might of done a poorly worded post, are you thinking im meaning an emotional feeling and not the physical feeling of tremor? If so i meant the later sorry! I find the feeling hard to describe, having an electrical current continually running through you, whilst standing on one of those vibrating machines is kinda close but swallowing a mobile that's switched to vibrate could also work, it feels horrible and i just haven't gotten use to it yet.

cheers...........JJ

[aspen2]

Cognition, absolutely.

If I still had TN, then that would bump to number 1.

I have a sense of humour (at this point) re: physical foibles (loss of balance, right side weakness).

I have no sense of humour whatsoever when I'm lost in conversations, can't remember what someone just said or can't follow two-step directions (because i forget the first step).

Hopefully I'll develop a sense of humour there too, 'cause it's much easier to cope.

[PastorDan]

JJ, dear, tremors of any kind make us self conscious.  That, in turn, produces emotional stress.  The constant movements burn caloric energy, and the stress of it wears out our emotional reserves.  It's no wonder we're so tired!

[supermum_ms]

Fatigue in varying amounts is something i've been juggling with since 03, its also when i first started associating fatigue with loosing my legs, though it wasn't until my big bang of 09 before I developed a totally new understanding of  what loosing your legs could really mean lol something to do with walking like a string puppet to aid in changing my perspective :D

Fatigue is probably in the top 5 of most common MS sx's, stats put it around 80% but fatigue is tricky because it can additionally be a result of sleep deprivation, depression etc as well as the unknown causation or bonus turkey of having MS.  I've had the idea that fatigue only when its at its worst is called Lassitude but that's not necessarily correct because it seems to be the common term used for "MS fatigue" .

"What Makes MS Fatigue Different?

Several different kinds of fatigue occur in MS. For example, people who have bladder dysfunction (producing night-time awakenings) or nocturnal muscle spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. And anyone who needs to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from additional fatigue as a result.

In addition to these sources of fatigue, there is another kind of fatigue—referred to as lassitude—that is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called "MS fatigue" that make it different from fatigue experienced by persons without MS.

Generally occurs on a daily basis
May occur early in the morning, even after a restful night’s sleep
Tends to worsen as the day progresses
Tends to be aggravated by heat and humidity
Comes on easily and suddenly
Is generally more severe than normal fatigue
Is more likely to interfere with daily responsibilities

MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment."
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/fatigue/index.aspx

I was of the mindset that there are different types of fatigue, cognitive fatigue, physical fatigue and then lassitude, lassitude i was thinking was when everything has basically shut down and i'm left impersonating a human paper weight. lol or as others have described it as "the house burning down and not having the energy to move"  yep I soooooo understand all of them.

I seriously don't know why being a bobble head drives me nutts when other things don't, maybe its just the feeling that comes with it that i can't get use to lol don't know but its definitely on the top of my list at the moment.

Cheers............JJ

[johnniebear]

cognition..... and then balance ..


In conversations when I seem not to grasp something, I can always ask them them to repeat what they said,  I have short term working memory problems , the  damaged is done..  I process  data slower.


Just a very small number of my  friends  know what I'm dealing with,  I can blame the balance issues on the ankle surgeries that I had.   Thats what I tell people  don't know me when I lean unexpected.

Otherwise the saying about alot of us  with balance issues  they say,      " I wonder  if  he has been drinking "


take care
Jb

[maxthecat43]

I think for me, fatigue and trigeminal neuralgia are the worst.  

[PastorDan]

Well, now, since you bring that up...  Not having a dx on which to blame all this other stuff is also pretty high on my list.

Of course, , I had to open my big mouth.  The eye pain has become horrible tonight.

[Maracamama]

Hmmmm.  That's a hard choice between fatigue and balance problems but I think I will choose the balance problems mostly because I can't hide it as well in public.  It can be quite embarrassing falling into things around strangers who tend to assume that you must be drunk.  I actually had a lady yell at me in a store once for bumping into her cart.

I'm not officially diagnosed yet though so I may not count but I definitely get to share the symptoms :)

Laura

[candy158]

heh guys, my is UTI`s ..... and twitching.     gets embarassing and I seem drunk or something like that when I go out.  Not all the time, but alot of it.  

Fatigue, as well, as everyone else, we sleep alot, and need to rest often ....

Well, I get to rest next week, so, will be praying for you all then .

Candy