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.