Do you ever feel good?

[marti]

I know I have several health issues and any one of them can cause the same symptoms as the MS. But I almost never feel good anymore. I thank God for each day that I have some relief, but they are fewer and fewer.

All the pains, palpitations, dizzies etc make me nervous and anxious and it all compounds to make me feel awful. I'd like to just blame it all on MS and say "whatever". But I know I can't do that.

But I wonder if MS just makes us "not feel good".

[rdmc]

Well Marti...you asked this on the right day because I've just been ranting to my husband about this exact thing.

Physically I never feel well. There's always pain, and strange symptoms distracting me, and that's if I'm just sitting in a chair Having to get out of that chair and try to function in the real world just adds to the fact I have to face that I've gone from sometimes feeling good, to physically feeling ill all the time.

This is a family wedding weekend (a nephew.) I had to skip the rehearsal dinner last night, because there would be no way I could do rehearsal dinner in a large restaurant till late last night, and turn around and do the wedding and reception today. Plus my husband tells me my sensory overload would have been hit because of the seating arrangement and loudness in the restaurant.

But what I was telling my husband this morning was that going to an affair like this is getting harder and harder. I have to prepare for every contingency (plus this wedding is outside in Florida and it's in the 80's right now)...so I've already okayed the sitting indoors during the wedding if the temps don't drop.

Then we come to the reception (which is inside), and since my talking is affected, that's another gauntlet to run, being seated at a table for a couple hours, trying to fit into the conversation, but realizing that my speech will become more garbled as I speak.

Add to that my meds I have to carry along for every contingency since MS has given my autonomic system a mind of it's own (med to slow down heart rate, med to bring down bp if it starts to take off.) Plus a tube of lidocaine in my purse, LOL, in case my feet start burning too bad. I feel so old with a med for every different part of my body

It just gets to be overwhelming and not "fun" plus there's a certain amount of pretending involved because you can't let on how you really feel. I am glad I can attend, and will be glad I was able to go, versus being bedridden or in a state like we saw on those AF videos. But the "illness" feeling (I often wonder if it's fatigue) and the actual symptoms of MS just makes everything seem so hard.

So. long rant, sorry...but to answer your question...I never feel well anymore. Good news for people reading this post, I used to feel well, it's just that the disease has caught up with me after many years.

[MinnieGirl]

I Know What You Mean

I'm not diagnosed with anything officially, yet I can tell you that for the most part I feel pretty yucky every day. Sure, some days are definitely worse than others. I used to be very active and a happy-go-lucky kind of person.

I take vitamins and supplements, try to exercise, and be as positive as I can. It is so frustrating to have this whatever it is and have no name for it and have people not understand. Maybe tomorrow I will be back to my more positive self. Today, I am just ticked that it seems there is nothing I can do about it, no matter how "good" I am with diet, supplements, etc.

Hugs,
Minnie

[valeriem2220]

Funny...I was just thinking this this morning.
I was thinking...."Gosh I would give anything to just feel like I felt 15 years ago, for just 1 week"
I just want a day even that I just "feel good"
because I never do anymore.

[marti]

Well Marti...you asked this on the right day because I've just been ranting to my husband about this exact thing.

Physically I never feel well. There's always pain, and strange symptoms distracting me, and that's if I'm just sitting in a chair Having to get out of that chair and try to function in the real world just adds to the fact I have to face that I've gone from sometimes feeling good, to physically feeling ill all the time.

This is a family wedding weekend (a nephew.) I had to skip the rehearsal dinner last night, because there would be no way I could do rehearsal dinner in a large restaurant till late last night, and turn around and do the wedding and reception today. Plus my husband tells me my sensory overload would have been hit because of the seating arrangement and loudness in the restaurant.

But what I was telling my husband this morning was that going to an affair like this is getting harder and harder. I have to prepare for every contingency (plus this wedding is outside in Florida and it's in the 80's right now)...so I've already okayed the sitting indoors during the wedding if the temps don't drop.

Then we come to the reception (which is inside), and since my talking is affected, that's another gauntlet to run, being seated at a table for a couple hours, trying to fit into the conversation, but realizing that my speech will become more garbled as I speak.

Add to that my meds I have to carry along for every contingency since MS has given my autonomic system a mind of it's own (med to slow down heart rate, med to bring down bp if it starts to take off.) Plus a tube of lidocaine in my purse, LOL, in case my feet start burning too bad. I feel so old with a med for every different part of my body

It just gets to be overwhelming and not "fun" plus there's a certain amount of pretending involved because you can't let on how you really feel. I am glad I can attend, and will be glad I was able to go, versus being bedridden or in a state like we saw on those AF videos. But the "illness" feeling (I often wonder if it's fatigue) and the actual symptoms of MS just makes everything seem so hard.

So. long rant, sorry...but to answer your question...I never feel well anymore. Good news for people reading this post, I used to feel well, it's just that the disease has caught up with me after many years.

OMG... I appreciate this answer so much. I hate any social activity! The fatigue, the anxiety, heart rate and b/p changes, meds..... on and on. Thanks for putting it so well. I have been feeling so bad today that I don't know if it's fatigue or dizziness. They feel the same!

I am sorry you feel so bad. But I totally understand. I'm kind of glad we moved far from home and don't have to do the family things. Just have our own kids and they are grown and gone. But they even make me a little nervous sometimes. Moms are always the ones who take care of everyone else, aren't we?

[marti]

I'm not diagnosed with anything officially, yet I can tell you that for the most part I feel pretty yucky every day. Sure, some days are definitely worse than others. I used to be very active and a happy-go-lucky kind of person.

I take vitamins and supplements, try to exercise, and be as positive as I can. It is so frustrating to have this whatever it is and have no name for it and have people not understand. Maybe tomorrow I will be back to my more positive self. Today, I am just ticked that it seems there is nothing I can do about it, no matter how "good" I am with diet, supplements, etc.

Hugs,
Minnie

I tried the supplements etc and finally kicked all of them to the curb. I try to limit meds too. Hope you start to feel better.

[Thinkimjob]

Oh, I hear you, rdmc. Then there's the whole really needing to go to the bathroom right now and having to negotiate tables and chairs and people and noise thing. "Conveniences" located miles away across the room is anything but.

That said, on some "outings" I actually don't feel too bad, if I haven't done too much, I haven't travelled far, and it's not hot. Almost normal, but not quite.
It's the noise and sensory overload that gets me in the end.

[rdmc]

Oh, I hear you, rdmc. Then there's the whole really needing to go to the bathroom right now and having to negotiate tables and chairs and people and noise thing. "Conveniences" located miles away across the room is anything but.

That said, on some "outings" I actually don't feel too bad, if I haven't done too much, I haven't travelled far, and it's not hot. Almost normal, but not quite.
It's the noise and sensory overload that gets me in the end.

Morning after report, I'm glad I went, I enjoyed seeing some folks I hadn't seen in a long time, and the wedding/reception was lovely. Temps had cooled off some, the wedding was on the water so there's a breeze, and I sat in front of a huge fan, so was able to be a part of the group and not have to sit inside the house. Only had to drive 10 minutes to wedding, and stopped by our house on the way to the reception (which was 5 minutes away)...so minimal time in the car.

We all know we put ourselves in situations where we know we'll suffer the next day, deal with the pain during, and prepare to feel the "craziness" of sensory overload. And it's worth it....just wish it didn't have to be this way. But we "live the life we're trapped in" and enjoy it even though it takes a lot of planning. And I'm thankful that I still have the capacity to do that.

[gresh3]

Ditto RDMC

I have such pain and various other crap that doing social functions is so hard for me. I did push years ago and go to my nephews graduation and his 1st wedding But his 2nd wedding just could not and now he does not talk to me. So goes for another cousin because I missed her daughters wedding as it was 4 hours away and I was having an exacerbation. They are sooo religious also, but that does not include forgiving. I always have pain, but for a year it has been unbearable. So, no not a day goes by that I actually feel good. And I am actually a very positive person. I tell my husband I could get so much done if I just was pain free for 1 week.

[DianeD]

Well Marti...you asked this on the right day because I've just been ranting to my husband about this exact thing.

Physically I never feel well. There's always pain, and strange symptoms distracting me, and that's if I'm just sitting in a chair Having to get out of that chair and try to function in the real world just adds to the fact I have to face that I've gone from sometimes feeling good, to physically feeling ill all the time.

This is a family wedding weekend (a nephew.) I had to skip the rehearsal dinner last night, because there would be no way I could do rehearsal dinner in a large restaurant till late last night, and turn around and do the wedding and reception today. Plus my husband tells me my sensory overload would have been hit because of the seating arrangement and loudness in the restaurant.

But what I was telling my husband this morning was that going to an affair like this is getting harder and harder. I have to prepare for every contingency (plus this wedding is outside in Florida and it's in the 80's right now)...so I've already okayed the sitting indoors during the wedding if the temps don't drop.

Then we come to the reception (which is inside), and since my talking is affected, that's another gauntlet to run, being seated at a table for a couple hours, trying to fit into the conversation, but realizing that my speech will become more garbled as I speak.

Add to that my meds I have to carry along for every contingency since MS has given my autonomic system a mind of it's own (med to slow down heart rate, med to bring down bp if it starts to take off.) Plus a tube of lidocaine in my purse, LOL, in case my feet start burning too bad. I feel so old with a med for every different part of my body

It just gets to be overwhelming and not "fun" plus there's a certain amount of pretending involved because you can't let on how you really feel. I am glad I can attend, and will be glad I was able to go, versus being bedridden or in a state like we saw on those AF videos. But the "illness" feeling (I often wonder if it's fatigue) and the actual symptoms of MS just makes everything seem so hard.

So. long rant, sorry...but to answer your question...I never feel well anymore. Good news for people reading this post, I used to feel well, it's just that the disease has caught up with me after many years.

I couldn't have said it any better. I feel exactly as you do. Any outing, event, etc. has to be planned to the 'nth' by me. I always feel lousy, try to work around it, but sometimes just cannot. I feel like such a drag on my husband and extended family. I try hard to do things with them, but sometimes I have to just say no.

Diane

[gurbani_gc_yes]

Yeah it sucks

But somedays it can be good

[Sir-Voor]

Hi Marti,

Yes, currently I feel good almost every day.
Now three years ago I felt bad almost every day.

For me Ampyra that lead to changing my diet and being more active has been the magic that gave me back my life. I don’t know what magic you need, but rest assured there is the magic you need out there.

My best advice would be to not focus on find what to blame, but instead on finding solutions, work arounds and/or answers.

[MinnieGirl]

Marti Your Signature Is Great

I am in a bit of a better frame of mind, thank goodness! It is still frustrating that I am being "good " yet it doesn't seem to help much, yet who knows, maybe if I weren't I would be worse!

I don't want MS or anything else. I do want to find out what I DO have, whatever it is.

I hope you are doing well

Hugs,
Minnie

[MrsJohnson]

Yes I do have good days. They are not great days I should say.
I don't go on wonderful trips, I can't travel really. I do sometimes really feel down for the things my family and I have missed.

Sometimes the good days are just a fun trip out to the store. A simple day, no expectations PIZZA.

Maybe things were not good, but comfortable. If that made sense. I could laugh and enjoy spending time with my daughter. She never cares if I use a cane. It has never bothered her one bit.

[emily06]

I haven't had even a slightly good day in at least a year. Now for the past 5 or so months each night I have elaborate dreams/some of them nightmares. So I wake up feeling even more tired then I felt when I went to bed. And the past couple nights I have bad lower back pain.

And during the day I feel so fatigued (even before the paticapatory dreams period); I'm dizzy all the time with dizzy surges where I have tiny "black outs" as far as vision; and never do I see good. (I've had cataract surgery; RK surgery; optic neuritis a couple of times; and I was born with poor eye sight -18,-17 each eye) So eye doctors and neuro don't know what to do for me - opthamologists think it's MS and neuros think it can be correct by opth. And there are the migraines; and the numbness or pins and needles; and the sometime really hot sensation in my feet or legs. thats the MS stuff.

then there is Jaw pain - that's the newest problem where my jaw becomes dislocated then pops back in place. the dentist wanted me to go to a Specialist but again I can't get there.

I'd welcome a day of feeling good!