[MSacorn]

Since I moved back to Ohio (5 months ago) I've tried to stay upbeat. I didn't want my family to see how crummy I feel every day. I don't want them to "baby" me and feel like they can't have Beth do anything because she's "sick".

So I accomplished that goal, and now I am alone and isolated with family all around, or at least a text message away. I might as well be in Denver where there is sunshine and the mountains to go with the isolation and lonliness.

It's been 3 weeks since I sprained my ankle. I can't put all my weight on it and am hobbling with a cane that is making my MS worse in my weak arm. The heaviness and numb thickness has creeped in big time. Could I be having a flare due to this stress and added difficulties? I'm afraid to think it.

My Dad (bless his heart) is starting to snap at me and I'm afraid to say anything because he is the only contact I have with the world. He is making my meals and I do dishes to share the chores. He's stressing about money but won't cut back on groceries. He's on a eating healthier and getting us both in shape kick. Sounds good in theory. I don't know what to do.

I'm having a good cry and hopefully will sleep well and feel better tomorrow. I know there is no magic potion or easy fix. I just had to get this out of my head. If you're still reading, for being here. I don't know what I do without you all.

[doydie]

I know what you mean. In the last year I have changed my attitude and let my family see more of the real me. It has kind of shocked them and my Mom and sister think my MS is worse and I have tried to explain to them that this is the me from several years ago, I just kept it at home and didnt let it out when I was with anybody else.

[Kitty]

I know where you're coming from, Beth. I, too, tend to downplay and hide my symptoms. Mostly because no one really "sees" me at my worst.

During the day when I have to take a nap or not complete something because of spasticity pain or just fatigue.

When the pain in my arms and legs just gets to me and I cry. Or when I end up taking something for it (Neurontin) and that makes my balance issues worse. There is usually nobody here to share the experience with me.

So. . . . when they ask "how are you" my canned response is "fine". Then...when I do complain about something it's sort of a shock and everyone gets worried. Or when they actually see me on a "bad day".

I just wish they could "know" what I go through without them having to have MS!

[kicker]

AAARRRGGG! I'm so tired of being "A brave little soldier. I have trouble walking, I never remit, I steadily get worse. Either DH thinks I'm really strong and ok (usually when laudry, or kids, or his work, or something need attention or I;m poor little Kicker who is helpless without him. (How does he think I manage without him 8:00 AM to 11:00 PM sometimes? ) No, not easy, but get kids fed, go up stairs, go to bed, do it, don't I?)
Just a bad day. Thank you for letting me vent.

[tkrik]

Guilty! I am like that as well.

However, apparently when I am in a lot of pain it shows on my face. I try to hide it but it doesn't happen and those around me definitely notice.

As for talking about MS or complaining I just don't do it that much. One of my sisters explained to me that I need to let them know what I go through so they have an understanding and can be supportive in a more helpful way. (None of my sisters live in town and only 1 of my brothers lives here in town). Support from my brothers and sisters comes in the form of phone calls and/or e-mails.

I think the hardest part for me is to effectively communicate what is going on without downplaying the symptoms or sounding like I'm complaining. My neuro did talk to me about downplaying the symptoms and ignoring them all together. It's just something I need to work on.

[Carolynj]

Thank you so much for this post! It expresses my own feelings to the letter! I feel like others can't know what we are feeling so what's the point? When I try to share it - I just feel like I am whining (and get the impression they think so too) so I stop. I mean - how much do they REALLY want to know?

Again - I thank you for this. Sometimes it just feels good to get it out!