I came face to face with my disease yesterday, and it scared me.
 

And I hated it :mad:

I guess I have been living in denial land, more so than I wanted to admit. I haven't admitted that I am having spasms and pain in my thighs that ISN'T going away like I tell everyone. I don't want to admit that my fatigue has gotten worse since my last "possile" relapse. I still say possible relapse, possible MS, possible onset. I am afraid to read into anything because I am afraid I am "living up to a label" when the fact of the matter is, I have managed this for 8 years... and now it seems to be noticeable. I wonder, often, if it is because it has gotten worse, or because I am living up to the label (which is what I am afraid of). I wonder if I have MS I wonder if they made a mistake. I try to be strong on the outside to everone, and deny it to myself on the inside. I try not to use the word MS. I say disease, or discomfort, or possible...

So, in order not to live up to the label... I have not admitted pains and fatigue to myself, my family, or my doctor. Yesterday, it caught up to me. I had to face it head on, and boy did I question everything, even my VERY HAPPY marriage of 14 years.

I was sitting at work... all of a sudden I got so very tired. Everything went heavy. Even my eyelids felt like there were weights hanging from them. Then I knew... I knew this was beyond my control, more than just a little fatigue that would pass. Then I started questioning my jobs, geez, if I would have had to work my second job yesterday, I would not have made it. Then I started questioning my marriage. My husband starts tasks, and they remain unfinished. So, we have 100 things around the house that he has started and have not finished. His excuse would be that when he comes home and sees that I have been home all day and got nothing accomplished, it would **** him off (I knew this, and felt badly when it would happen, but this is before there was a name to go to this other than laziness). So, over the last few years, I have de-motivated him. Or I would end up needing his help to finish the tasks I started in the house and he would help me with the chores and not get his stuff done. So, I started thinking, what happens if the time come I can't do things like I can now, and add that I may need him to take care of me on top of the chores and the fixer upper things.. can I count on him... I mean in 5 minutes I had myself talked into divorcing the man that I love for his benefit... yes, extreme. I guess that is what happens when you face what you have been ignoring for 8 years.

The pain in my thighs was so bad yesterday I could not ignore it. I talked to a really good friend, we stopped for coffee. I tried talking to her (she is still in denial, and not wanting to accept this as well). I was trying to explain the fatigue I was feeling (and still fighting mind you cause I should have gone home and went to bed, but I am determined, still, not to allow this to run my life... so I pay later, I know), and she pipes up, Oh I am a little tired today to, maybe I have MS... She adds, she is really just kidding. I know it is hard to accept... but that kinda hurt me. I added about the past 8 years, and the reason my housekeeping sucks... and she says about being lazy. UGH, after the day I had yesterday... it just made me more depressed cause you CAN'T explain this to people, because they CAN'T see it, and they DON'T accept you ARE sick... heck, I don't accept it sometimes when I should.

ACK!!! I don't like this. I don't like it at all.

Anyhow... dh and I talked. I yelled... but he knew I was expressing my fears, and taking it out on him. He is a good man. He acknowledges that he has to pick up more slack, and that he is fine with that now that we know what is going on...

All this is so hard to admit, cause I am still holding out an ounce of hope my second opinion will say it is not MS. If that happens, where does that leave all this discovery and acceptance and blame... Back on me...

ACK, have I mentioned how much I don't like this. How much it scares me...

At least I feel better today, which means I can go back into denial mode cause I can veg tomorrow...LOL

ACK!!! I HATE THIS!!!! I really, really do. When does acceptance come. When do other people "get it." When do you stop second guessing everything, and face that some problems are or ARE NOT related to MS. When do you know when to say when? I don't wann say when... but when will I know if I hafta...

ACK!!!! I realy, really HATE THIS.

*stomps on floor, and considers throwing a temper tantrum on the floor... but realizes it will hurt to much and take to much effort to get off of said floor, so stomps some more*

When will it not be all about me anymore!!! I want life to get back to NORMAL!!!

Sheesh, you act like deniel is a bad thing..:D It isn't and not only that, it's necessary, to keep our sanity.

I'm beyond deniel now, but my DD is still there and I go along with her, as long as he keeps taking her LDN..;)

Have your DH and DF go to..... http://multiplesclerosissucks.com ...and read....It's great and a real education for those who do not understand MS. The site was created and written by a very wise and very funny, MS Friend......Enjoy..:)

In the meantime, keep up the deniel, but take your meds..:hug:

Thanks!! I just found that site the other day and found it hilarious!!!

I have one question... I haven't figured out what LDN is... can you help me out ;)

Connie

In the beginning, I think we all (maybe not all) are in a state of denial about what's happening to our bodies.

It's the natural process of coming to grips with this MonSter of a disease that is going to change HOW you do some things. Every day will be different. Some days will not be any different than others, but some days will be.

Fatigue and pain are my two biggest enemies. One has to learn how to control them or they will take over. Learn how to live with them...it will be a symbiotic relationship. Otherwise, you won't get past it.

---my short story when I was first dx'd ----
I was in school full time finishing my Bachelor's degree in Horticulture...the last two years of the degree being the "physical" part of the program. The dx came out of the blue. The most difficult part was having to go to my classroom and tell everyone that I just been told I had MS...and had no clue how it was going to manifest itself but I was determined to continue with the program and graduate with my class.

Those next 2 years became very difficult. I had exacerbations every 3 months...spent more time in the infusion center at the hospital than I did in class...but my classmates were wonderful. We all got through it. I did not give in. I had one instructor that didn't get it, but I was determined to get through the program and I did. I had to work harder on things than anyone else did, and I had to take some summer classes, but I did it...I graduated with MY class with a 3.97 GPA #1 in the program!

Facing the MonSter is not giving it...it's taking the bull by the horns and dealing with it. We each have our own way of facing reality. You just have to find yours. :hug:

I don't mean to take anything away from your pain and what you are dealing with by posting what I went through, but I just wanted to let you know that I went through denial too...sometimes I still do 7 years later! It's how I cope.

As for the the way your Husband handles it...yeah...totally understand. ;)

Low Dose Naltrexone.

I agree with Sally....some days we just have to pretend that everything is OK. We know deep down it's not - but pretending is OK as long as we keep a grip on reality.

I know what you mean about others not "getting" it. I've gotten to the point where I am tired of explaining the same thing over and over so I just give out the website Sally mentioned (www.multiplesclerosissucks.com) and tell them to read up on it.

My latest victim was my sister. She asks every time I talk to her if my hand/arm is still numb. I tell her yes. She asks if I am still taking my medication. I tell her yes. She asks why its not working. I have been over this a million times with her. I'm tired of trying to explain it. Some days I can't even put the words together TO explain it. So I just tell her I don't know. That begins the "20 Questions" game and by the time we hang up I am exhausted and totally frustrated. :(

You're fortunate to have a husband who understands and will pick up the slack when he needs to. It's natural to question things.....even our relationships. I've learned to sit on" things before I "act on" things. Because I may feel totally exhausted and ready to give up today but tomorrow I will feel fine and have energy to spare.

Take care.....and just know that you're not alone. :)

http://lowdosenaltrexone.org ....Read all about it..:)

So much of the literature on chronic diseases deal with "fighting the disease."And I have no real idea what that phrase means, except that, to me, it is absolutely an absurd concept. What I try to do is the opposite. I try to accommodate my disease, to give in to it. When I am sick, I act sick, and then I try to treat my sickness, but to do that I need to give in to it, not fight it...just like an athlete who listens to his what his body is telling him, I have learned to listen to what my disease tells me, and rather than denying the message, I give in to it, accept it, and then I try to make the best of it, to smell what roses are left for me to smell.

If another person were in your shoes what would you counsel them to do...to fight the disease means to resist, to push back, to resist. But that makes no sense.if you were to really fight a disease, you'd refuse to go to a doctor, and not take meds, or seek help.

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.

I have also quit trying to describe my symptoms to others, I just say that I am sick today, and leave it at that. If they want to know more they'll ask...and most do not.

michael,

I agree with most of what you say in this post. For me, fighting it means that I do all that I can handle physically and mentally and do not push myself. Those around me know that I do all that I can and they have never questioned me or offered advice to "fight the disease".

Your approach is much like mine and I think we are both pretty smart cookies.

gmi

i know this isn't an easy process.
you havn't been dx'd very long at all.

i got dx'd at 53. i was working in nursing in the NICU with babies.
i finally got to resign my job because of the physical demands. i still remember how shocked i was. how afraid. i really grieved for my self. nursing was my life; 35 yrs.

but i got help with therapy in dealing with all my feelings.
my good friends get it. but you're right. most people just can't and i don't blame them. your dh sounds like a great guy.

be honest with your dr. that way he can help you to better control and/or work with how you are now.

just try and take 1 day at a time. it took me a long time to know what my limits were. for a while i could go past them but not anymore. if i overdo i pay the price in pain and fatigue.

learning to judge what you can do and when you need to back off and rest takes some practice.

i'm glad you're on the board.
hope to hear more of your posts.

Amen~
 

[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!

Dear Beauty,
 

:hug::hug::hug::hug:

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. :wink:

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.:hug:

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!! :hug:

...did I misunderstand...I thought Beauty had a firm dx, but is just going for a second opinion? I may have gotten it wrong. :wink: 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. :hug:

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!

:hug:

:rolleyes: You make it seem so easy!!! I like your way of thinking!! ;)

Thanks! Really, Thanks!!

I know what you mean about having nobody that you can talk to in person. I have days that I go to work tired as can be and the bad thing is I am on Bupropien and Provigil C and I am still tired.Then people come in and say man they are tired after partying the night before. I hate this disease. I sometimes live in denial. I don't want to admit that I have a disease and I that I have to take a ton of medicine a day to function and it still somedays doesn't even help with the pain. I have days where I want to take my kids to the park but can't because the heat gets to me.Optic Neuritis is keeping me from driving:( and they said either it will get better or it won't.That was 8 mths ago and they have gotten worse. I just get so frustrated sometimes and denial comes and goes for me.But know you are not alone:grouphug: