[QUOTE=michael178;271341]But I say when another person has fatigue, don't hand them a shovel, give them a pillow. And, please, be as kind to yourself as you would to someone else. QUOTE]


Amen to that! Good advice to all of us....I mean, try giving ourselves a pillow instead of a shovel...THANK YOU FOR THAT! Aren't we always nicer to others than we are ourselves. Definitely time to add ourselves to the 'nice' list!

Please know you are not alone...though I'm sure sometimes it feels that way. Many of us are thinking "you could have written this about me." I wish you had a friend who truly understands you, now. But I'm glad you have us to talk to, at least. We do all understand.

People will come around in time... but I know that doesn't help alot right now. It sounds like your hubby is starting to. The more he understands the more he will be supportive of you around other people too... you know, set an example for how to treat you and respond to you. Rely on you hubby as much as you can. It's part of that whole "for better, for worse, in sickness and in health" scenario. I'll bet you are thinking....yeah, but it was supposed to be me taking care of him,,,,because you live to take care of others... am I right? Funny how here at NT, we can get to know you so quickly.

Hey, talk to us all you want....gives us a chance to be the helper...ha!

Wish I could make it all better. But just know, I understand how you are feeling. You are not alone.

To answer one of your questions: When you have not had a firm diagnosis (aka: Limbo) you can't accept what it is, because there is yet to be a lable. If you ever get the dx, than I think the process to accepting can begin in a healthy way. (But could still take years based off of what others here have said)

I was in your shoes last winter, I was convinced I had MS. Now that the testing is over and I am left in a 'possible MS' state of being....my way of handleing it now is to wait it out and not worry about it. I'm hopeful I won't have any more flairs....but if history has an eye for my future....I should have a flair in about 3 years.

In the meantime, I've pulled myself out of the drama, the obsession and the depression. Survival instincts have come out...BUT...my sx have gone away and pretty much the normal me is back....when the flairs are going on, it's impossible to ignore though....

One other thing....I got those same responses from some family and friends too...(I'm tired too, I forget things too, Sometimes I get tingly, My eyes get tired) When people minimize your sx it's enough to make you feel crazy (I went to a Phyciatrist to make sure I was not crazy).....

Fortunately for me my DH was never one of the ones to minimize me and did all he could to comfort me....just keep the lines of communication open there! In your post you said you thought of divorce...then later said he was a "Good Man"....that speaks volumes

Just hang in there....and can't wait to hear how the LP went!!

...did I misunderstand...I thought Beauty had a firm dx, but is just going for a second opinion? I may have gotten it wrong. Just wanting to get it right in my head. Thanks. I am so glad we are all here to support one another. When there doesn't seem to be people who understand what is going on with us, it's nice to have this placd to turn to for comfort and support.

Greenjeans, I can't imagine what it is like to be "possible" ms. It doesn't change how your sx are feeling to you, I imagine it just adds an extra stress on top of the ms sx you are dealing with. My thoughts are with you.

BTF, in plain language, you just get used to it, one day at a time. It's not denial, fighting, accommodating or anything else, it's just living with it.

If I want to do something, I figure out how and I do it.

AMN,
You are such a wise lady!!! You have such a way of just summing it up in such a meaningful way! I know this message was not for me...but thanks!!!

I guess I look at things differently. I work with people that have the disease of addiction, which IS a disease, and not a lack of will-power or moral failing. I have to counsel these patients and tell them to fight this disease. I can't tall them to accommodate it, because accommodation to the disease of addiction would be to pop a pill to make them feel better, and continue to cycle of addiction. So to me, fighting means to do what is best for my body, but for ME to know what that is, and not allow things to dictate it. I guess, almost what you said

I look at fighting in the aspect of not allowing this to consume my time, my life, or my thoughts. I do not want, at the first feeling of fatigue, to rack it up to MS fatigue, and grab a pillow, when it could be that I ate to much sugar, or I am tired because I got 7 hours of sleep instead of my normal 10, or that I am emotionally drained because of having to counsel a patient. I need to fight the fatigue until I can figure out what the fatigue is. Then if I have to give in to it, I will find a way to do so.

I have never been one to act sick when I am sick. That is a weird concept to me, as much as fighting a disease is to you (concept, not ideal - I understand what you are saying, and not trying to be condescending with that remark). When I would have the flu, or a sickness, being a nurse, I would still have to show up most times. Even if it meant fighting my way through the day and wearing a mask so I don't make my patients sick. I didn't stay sick longer than any colleagues who did give into their sickness, but I was able to get more accomplished by not giving in.

So, I guess, by nature, I am a fighter. I don't know how that is going to affect his disease yet. I guess, when the disease progresses more, that I will have to give up some of the fight. I will learn to do that.

You are right in what I would tell another person who is sick, or has a disease like the one we suffer from. It is so easy to tell someone else to take it easy than to do so myself. I am afraid it will lead to a loss of things. I guess, ultimately, fear is what is making me fight so hard right now. I *AM* learning my lesson though. For instance, I paid for 3 days, for the decision to go out with my friend and have coffee after that fatigue hit, rather than to go home and sleep.

Thanks for your perspective. I need to see all sides to this and how others deal to start working out my own pattern of how I am going to accommodate this disease.

Amen!!! And thanks so much =)

Ha, not only was it supposed to be me taking care of him, but who'd have thought we'd have to face it so soon!!! No one, when they marry at age 18 and 21, think the sickness and health part could hit before your 40's!!!

He is very supportive, always has been. When we found out what all this was, he apologized for not understanding my "bad days" for the past 8 years (although he always seemed to understand and deal with them just fine).

Hugs back to you, and a grea big MUAH!!!

I do have the DX. I am choosing to get a second opinion. Not that I expect different results, just more information and a different perspective. When I ordered my old reports from my hospitilization in 2000, I saw on there MS as a dx THEN!!! I never knew they put it as a dx, but they DID tell me to follow up to rule it out, which I never did.

When the divorce thought entered my mind, it wasn't anything to do with DH, so to speak, other than I was fearful for MY future and his as well, and I wanted to "save" him from that future. LOL!!! He has always been supportive, even when we did not know what was going on. But, he did tell me recently that he thought my "bad days" were overly dramatic sometimes. He apologized for ever thinking that. I told him not to worry, cause at the time, I thought I was being overly dramatic as well, and that I was just *THAT* lazy. Reall, Ihave the best man in the world (although I think you may argue that fact with me, it sounds).

Thanks for your kind words!! My thoughts are with you also, and I hope you get answers very soon! I can't imagine the not knowing. I just lived in the ignoring place for awhile.

I can't wait to hear the results of my LP either. I am going to put a bug in the neuros ear on Monday, although I know she'll call when she hears!