I Have MS . . .A Reflection & Renewal
 

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.:hug:

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

Tricia, Thank you for your post. :hug: I guess I have been struggling with this also. Notice I am not willing to definitely say I am struggling with this.:rolleyes: 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.

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

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". :rolleyes:

Thanks so much too, for expressing what we all need to say too :hug:
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.

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.:p 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:rolleyes:, 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.

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. :)

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

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.:cool::D

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

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

:Good-Post: :Thank you:


Very well stated Trish! :cool: :hug:

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...:rolleyes:
Thanks again for your post...:hug:

Wow! I didn't realize how many of you were going through a similar experience. It's a combination of denial and grief; denial that this is happening to us and grief for our old selves.

So far, the techniques that I am learning from my counselor and opening up more are working. I have to self talk a lot but am directing it my thoughts in a positive ways. Reminding myself that this is just the way it has to be and to not fight what my body is doing.

Another example . . . I love sitting in the living room with DBF early in the a.m. We drink our coffee, watch the news, talk, etc. It's a nice peaceful time. This morning my legs just did not want to be in a sitting position and they clamped up. Instead of getting frustrated or upset, I just told DBF that I needed to go back to lay down and stretch my legs out. I came back to my room, self talking A LOT all the way there, and got myself situated on the bed. It was a tough, but I made it through with out beating myself up and causing myself more stress, tension, and even anxiety.

I hope we all find some peace and acceptance in all the craziness MS brings us.:hug:

Good for you, Tricia. :)

Ya know......why do we stress so over the fact that things do not stay the same? Our health, our lives, our weight, our job situation. All these things are going to change. It's inevitable. Some will change positively....others not so much. But, It's our ability to "go with the flow" and make adjustments to our attitudes as well as our physical selves that will determine how much enjoyment we get out of our lives.

This thread and all the responses has helped me immensely. :grouphug:

To be honest, the first thing I did after my diagnosis was seek counseling. It really helped put things in perspective......BUT
it all comes down to this:

God give me the strength to accept the things I can not change, courage to change the things I can and the wisdom to know the difference

That is so true! I wonder if there is a 12-Step program for MS. :D I don't know much about the 12-Step Program, just it's effectiveness. I am sure you can apply it to MS. They apply the same concept to many other things/support systems. I know several people who go to Al Anon meetings for support as they have family members or friends that are addicts. They have a name for the group, I just can't think of it right now. They all love going to these meetings and have told me that the concept applies to so many areas of our lives. A couple of them even told me to just attend one as you can learn so much at them and the group is so dang active! They are always doing something. (Very unlike the MS support groups here in town).

I guess I need to read up on it and come up with an MS 12-Step Program plan.;)

wow... when I started reading your first post it reminded me of a line from the Big Book of AA:
"And acceptance is the answer to ALL my problems today. When I am disturbed, it is because I find some person, place, thing, or situation- some fact of my life- unacceptable to me, and I can find no serenity until I accept that, person, place, thing, or situation as being exactly the way it is supposed to be at this moment."
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The 12 step program can be used in any way you desire. In the early 70's, I started using it as a tool to improve my life. I generally have to practice step 1 every time I leave the house and sometimes while at home :D Step 1: Admitted I was powerless over (alcohol/drugs/husband/MS/cat..)and that my life had become unmanageable... (what is 'unmanageable' differs for all of us)
amazing how just admitting to my self that I am powerless over other people places and things, and bring the focus back to what "I" can do to better my "Attitude" at the moment, really helps...
like driving down the road and coming up on that 'Sunday driver' doing 40 mph :mad: and I accept I'm powerless, turn it into an opportunity to practice positive thinking ("The universe has placed this person on the road to slow me down, I'm going to fast (emotionally/mentally/physically?) so i need to slow down and be more observant.

I fully believe that the more you practice 'acceptance' and do the things you can do--do your part, the better you will feel, Tricia. I commend you on recognizing your level of denial and the need for change. You are a remarkable woman :hug:

"I guess I need to read up on it and come up with an MS 12-Step Program plan."

Hey, we could even print up some Tshirts & create a secret handshake LOL

In all seriousness, you wrote what I am thinking in a much more elequant way than I ever could. Thank you

Viseeu - I had to giggle at your statement about practicing Step 1 every time you leave the house. Admitting we are powerless is so important. I guess I am on Step 1 of the MS 12 Step Program; admitting I am powerless to MS.

I found these 12 Steps online. They were adapted to general life issues and I just changed a few words to make it applicable to MS. Looking at these steps, I have done quite a few of them over the last month or so. Not necessarily in the order of the steps but different steps at different times.

The 12 Steps

Step 1 - We admitted we were powerless over MS - that our lives and bodies had become unmanageable.
Step 2 - Came to believe that a Power greater than ourselves could restore us to sanity and healing.
Step 3 - Made a decision to turn our will and our lives over to the care of God as we understood God
Step 4 - Made a searching and fearless moral inventory of ourselves
Step 5 - Admitted to God, to ourselves and to another human being the exact nature of our wrongs
Step 6 - Were entirely ready to have God remove all these defects of character
Step 7 - Humbly asked God to remove our shortcomings
Step 8 - Made a list of all persons we had harmed, and became willing to make amends to them all
Step 9 - Made direct amends to such people wherever possible, except when to do so would injure them or others
Step 10 - Continued to take personal inventory and when we were wrong promptly admitted it
Step 11 - Sought through prayer and meditation to improve our conscious contact with God as we understood God, praying only for knowledge of God's will for us and the power to carry that out
Step 12 - Having had a spiritual awakening as the result of these steps, we tried to carry this message to other MSers, and to practice these principles in all our affairs

It's very difficult if not impossible for me to make 12 real steps with my MS.:rolleyes::)

I am at a stage of acceptence, so I don't need the 12 step program, but I wish you luck with it and hope it brings you the peace of mind, you need..:hug:

LOL, Sally! There are days when it is difficult for me to make 12 real steps too. Hence, I am seriously considering a rollator and will be talking to my drs. regarding such. This is part of my new attitude and acceptance . . .acceptance that I need these things and that they will help me gain some of my independence back.

I am glad you are at the acceptance stage. Did things seem to get better once you got there? Well, in terms of less frustration and fighting of the symptoms?