[tkrik]

I have MS. Well, I was dx 5 years ago and have been wavering in denial ever since. It's been hard for me to admit it and learn effective ways to just deal with it. All these years I approached MS like I had a sinus infection. You know, take an abx and it goes away. This is not going away.

After a long discussion this past weekend with DD19 and DBF, I decided it's time to just face up to it, accept it, and learn new ways of dealing with things. I have been fighting it all wrong and unfortunately, I believe things are getting a little worse for me. During our conversation, we came up with all sorts of great solutions from chores to mobility aides and things that will help me improve my quality of life as well as admitting to the drs. that things are getting worse and checking out medications that actually might help me. As it is now, I can't even make it through a grocery shopping trip without my legs freezing up in tight spasms as well as worsen tremors and other stuff.

It is hard to admit my limitations. I know they are there but others don't. It is hard to just say I'm experiencing this or that. I am trying to be tough, but it really isn't benefiting me at all and is causing tension in me instead. I am sure it is much easier to just say I can't manage that task anymore - like vacuuming.

So, after 5 years of fighting it the wrong way, I'm throwing the towel in and starting anew. I will be trying to find ways to make my quality of life better and easier. I will be working with my drs. to come up with ways and medications that will help me at this stage of the disease process. I am only on 3 meds and they had been working for the past several years. I am not so sure they are the correct ones for me now. I will be reviewing that with them and making necessary adjustments. I also will be requesting some occupational therapy to help me with finding easier ways of doing things. I also will be making adjustments at home to help me so that I can do some tasks more efficiently and effectively. You know saving spoons and making the most of the spoons I have.

I have spent so much time lately trying to figure out what I need to do to feel better. What will help my legs work better, what can I eat to increase my energy, what . . . and so the list went on. I just can't do that anymore as it's causing me added stress and I start running in circles.

Also, this is the first time I have really said and admitted this. You all understand what I go through on a daily basis and the emotions involved with this disease. So, I felt most comfortable coming on here and posting this. So, if you got this far, thanks for listening to me admit that I do have MS and that it is not going away and I have to take a healthier approach to dealing with it.

[Blessings2You]

Bravo, yay for you! You have my admiration and respect...and prayers!

[barb02]

Tricia, Thank you for your post. I guess I have been struggling with this also. Notice I am not willing to definitely say I am struggling with this. My 4th year anniversary of dx was March 29th. I have never been in a full remission, but I keep hoping I will wake up one morning and feel normal. I know it isn't going to happen, but I have been having trouble accepting it.

[Kitty]

Thank you for expressing so well what some of us want (and need) to say, too.

I feel very much like you do. I try so hard to put up a brave front so that my kids won't worry about me. But, keeping my struggles from them isn't doing them, and certainly not me, any favors.

I've noticed, too, that my condition seems to be worsening. I hate to even say that because there is still so much I can do and I'm really, really not feeling sorry for myself. I am well aware that things could be so much worse for me. But, on the other hand, I do need help with some things and other things that I used to do with no second thoughts have become a challenge.

It's confusing for my kids, I know, because one day I'll be feeling relatively good and the next I'm in bed most of the day. How do you explain that?

I know exactly what you're saying, Tricia, and can relate so much to what you're feeling. If you're anything like me (and I think we're alot alike) you worry more about how your disease is affecting your family and less about how it's affecting you. It just comes with being a "Mom".

[debw]

Thanks so much too, for expressing what we all need to say too
I had thought for so long this was all in my head, or I was just getting old.
I try to trudge ahead, and do all the things i normally do, but it is so hard,
then I think I am just feeling sorry for myself.
The other night, I was frustrated, so I went outside away from everybody, and
trimmed some bushes, crying away, my son walked out on the deck and heard me. He asked me what was wrong, I said nothing. Just trying to deal with my frustration the best way I know. He said oh okay.
I try to keep my feelings to myself ,and don't let anyone know how I feel.
I just don't know how I can go on this way. I need a new attitute, or a way of being able to cope with this too.

[tkrik]

Barb - I too was thinking I was going to waking up in the morning and be back to my old self. And, when I didn't, I would go through such frustration and anger that the symptoms were still there. It would set a bad tone for the day and I just don't want to do that anymore. I've been lucky to have experienced periods of remission - not complete but times where symptoms would ease up for months. That's not happening. In fact, to be honest, I've been having more trouble with my legs for the past year.

Kelly & Deb - It's so hard for our families to fully understand and, well, they never truly will. I melted down again the other night which in turn, turned out to be a long discussion with DBF and DD19. DBF and I have never really discussed my MS (notice I am now saying "my" and not "the" or "MS"). He was so glad that the conversation took place and got a better understanding of what I have been going through lately as well as how the MS has effected me physically and emotionally and the difficulty I have. DD19 knew a lot of this as she lived with me before I moved in with DBF. She knew some of the things I go through. But, she has seen some changes and has concerns that she shared - mainly that my quality of life has changed and she's not seeing me doing the things I used to enjoy so much due to, what she now knows, mobility issues. I was surprised at the support, suggestions, etc. that I received from both of them. We have put them in action and when DD19 is here for the summer, she is going to help with arranging things & coming up with things that will make it easier for me.

Of course, we all agreed that I needed an attitude adjustment. So, I am starting. As an example, last Friday I ended up with a stomach bug. This caused my hug to act up terribly. As a result, I could not go to Mother's Day dinner with my Mom & family yesterday. I had to lay flat in bed with ice. Instead of crying about it, as has been my thing for the past month, I accepted it. I called my mom and let her know that I was not able to make it. She was understanding and I shed no tears over it. I actually felt better and ok with it; knowing that there are times I just can't do things and yesterday, I just went with it. (Of course, I think if my pain management regime was better, I would be able to do these things).

Of note, years ago my Mom had an MS patient that she took care of (she did home care nursing). The woman was bedridden and had 2 elementary school aged kids. She said the woman cried all the time. My Mom contacted her minister/pastor and asked him to come visit with her and assist her. I thought about this and I decided that I don't want to be like that. Opening up and accepting, to me, is far better than crying all the time and much healthier in fighting. So, like I mentioned, I threw the towel in (actually, the boxing gloves) and am starting anew and plan to head in a new direction in my fight. I am now fighting for a better quality of life instead of fighting the fact that I have the disease.

[Kitty]

It helps me more than anything else to be able to come here and know that someone is going to know exactly what I'm talking about.

[SallyC]

Trish is a brave trooper. Hey, don't beat yourself up over the deniel, kiddo, it's our first coping response mechanism to this cantakerous rankerous puky disease.

I had about 15 yrs of quiet deniel, while I was in remission. DD is in about in her 10th year of deniel, even though she takes her LDN and Prozac every day, just like her Mommy.

You are simply taking the next smart step to improve your QOL....We are right here with you and for you..

Good Wishes to you all, who are struggling with this..

[TwoKidsTwoCats]

Very well stated Trish!

[Debbie D]

Trish, bless you for posting this...guess you've decided to make lemonade out of the $#@&* lemons life has given you...
I am still in the fight and deny phase of this stupid disorder...I don't like to give in, esp when DH is around. I know that I should use a cane now...I walk like my 89 yr old FIL who has Parkinson's when I get out of a chair. I don't know when to stop unless the fatigue does it for me.
My neuro, when looking over my MRI from last June, said, "If I didn't know your sxs, I'd swear looking at this you didn't have MS." So, when he said that, I told myself, "maybe he's wrong about me having MS...maybe it's in my head and I'm making all of this up." Of course when I asked him how many lesions there were, he said, "26." Huh?

I am so glad you have such supportive understanding people who care for you...it makes such a difference. And I am sure that they are glad you were honest and up front.

I am glad you shared your stuff here...we all need to read this and try to get to that place where there is acceptance and openness to how to adjust. I know I'll get there eventually...
Thanks again for your post...