HELP...I need someone to understand!

[azgraves]

Today started out OK, better than usual, actually. I kept myself mildly busy most of the day....then it hits! My husband was helping me get in the vehicle when we were leaving from my daughters band concert....SUDDEN EXTREME WEAKNESS! I thought I was doing OK, then, I knew I wasn't. Am I the only MS patient to experience what I'm about to tell you? When fixing to go thru a really bad episode, the back of my nevk will feel like it just got hit by a freight train, then come the flood of tears. I'll have no reason to be upset, but the tears will just pour.
I will feel completely depressed over nothing I can think of and my husband can't seem to have any compassion...any other time he does. He thinks its a "silly" hormonal thing, I think its an MS thing. It will take hours to regain any strength. Definitely no strength until I'm so weak I become lethargic, I shake like I have Parkinson's, I've cried a river and completely lost the ability to comprehend anything said to me. My husband gets so frustrated with me during these times. How do I deal with this?

[Wordsgood]

Oh Asgraves, I feel for you. I really do!

I think the sudden deluge of tears out of nowhere is part of MS, just based on my own experience. But I'm no expert and could be wrong.

I'm in the process of trying to get past my neuro's staff to ask for cognitive testing as I find my self breaking down into a sobbing heap with little, and often no, provocation. At that point I can't communicate in any known language to save my life! I'm also have problems with memory, language - which used to be my strongest skill that I was very proud of - concentrating, focus, dealing with what used to be simple mental tasks that now take hours to figure out.

Basically, I believe I am losing IQ points at what to me, is a rather alarming rate. (Okay, at any rate is alarming, but when it seems like every month I find yet another I can seem to remember how to do properly and it's driving me batty!)

Sudden muscle weakness in various parts of your body is also part of MS, and I know from other members here that we are not the only ones to experience it. So no, you are NOT going crazy.

Hormones can also be a part of what you're experiencing right now, but I have to wonder, has your husband made an effort to learn about MS and precisely what kinds of effects it can have on our bodies and minds? Or does he just not want to learn?

As for the shakes, they are also called tremors and are another common MS symptom. But just from the way you spoke, I'm wondering if you are having a relapse at the moment? Or are you not sure if you are having one or not? Not all of your flare-ups (relapses) will necessarily begin the same way or have the same symptoms.

Has this latest bout started with your sudden weakness when leaving your daughter's concert and just gotten progressively worse with other things acting up? If so, you could well be in the middle of a relapse right now.

When was the last time you checked in with your neuro and GP? If you have tried to contact one or both since your daughters concert, I suggest you do so as soon as possible. If they can confirm a relapse, maybe they can give you something to try and ease the symptoms, and also maybe shorten the duration.

Good luck, and please let us know how you're doing.

In the meantime, please accept this Big, but Gentle, Hug!

[Guzzy]

Hi Azgraves
I understand I get this!
I cry, body flops. Only thing that helps is just to go to bed until the next day.
I only get this about once or twice a year and it's when I have pushed myself way too far - and it usually involves shopping or walking around a city.
I'm a MS oldie at this stage (diagnosed 14 yrs ago) and I ruthlessly manage my fatigue with a kind of selfishness. Meaning, I say to my husband, I'm done in I'm going home to bed. Or I'm sorry dinner is microwave dinners tonight.
How are you at pacing yourself?

[poohb3ar]

YOU ARE NOT ALONE!

sometimes i feel like i've completely melted into a puddle!
either as limp as a rag doll, or shaking like a wet chihuahua!!
bawling or sniffling so bad that it too brings on a migraine.

i just want to hole up someplace and be let alone for a decade or two (ok, maybe a little exagerration)

with my whole family right now and feel like my 3 mo old grandbaby who's crying over everything and nothing!
wish she'd lay down and nap with me. it'd get us all a break!
not happening, but i'm still hiding!

praying you feel better.
can't help too much with what to do about DH, mine's about he same at times. just depends.


take care and God bless ya!

[aitch10]

Hi Azgraves
I understand I get this!
I cry, body flops. Only thing that helps is just to go to bed until the next day.
I only get this about once or twice a year and it's when I have pushed myself way too far - and it usually involves shopping or walking around a city.
I'm a MS oldie at this stage (diagnosed 14 yrs ago) and I ruthlessly manage my fatigue with a kind of selfishness. Meaning, I say to my husband, I'm done in I'm going home to bed. Or I'm sorry dinner is microwave dinners tonight.How are you at pacing yourself?

The bolded is fantastic advice.

As an "oldie" myself(DX'd 10 years ago) I've not only become accustomed to the symptoms - the weakness, fatigue, what have you - but I've finally begun to allow other people to be around me when I have them.

Meaning I don't hide at home but am more than willing to admit defeat when I'm pooped.

I'm lucky that my DH undestands how the MS effects me, but he's had 10 years to get used to it. Your DH will catch on, he just needs time to adjust like you do.

So talk to him, your friends and the rest of your family. Tell them that how you feel varies. Explain your symptoms and that they come and go.

I've come to realize that people aren't mind readers and that if I spend too much time acting like everything's awesome then people tend to panic when it's clear that things AREN'T awesome.

Hope that makes sense.

Good luck and hugs to you.