Don't want to think about MS, but do all the time!

[jillmb]

I just realized that I wrote in another post that I feel like I'm in denial, I don't even want to think about MS, but then again, I realized that I think about it all the time!

Anyone else feel this way? I mean on one hand I am so busy with my life, family, work, etc...that I don't have time to even think about it, and I don't want to. But, then again, I find myself thinking about it all the time, make sense?!

Jill

[Alicious]

Totally. I;ve been told that really does ease up in time, but when you're still in the thick of a new diagnosis it can be really hard not to see everything in relation to it.

Hopefully as you get your feet underneath you again and can get some distance from the diagnosis you'll be able to really not think about it instead of denying that you are.

((hugs))

[Leola Stotts]

JILL,
I SURE KNOW WHERE YOU ARE COMING FROM !!! I CONTINUE ON WITH LIFE. DO WHAT I NEED TO WHEN I CAN AND TRY TO NOT ALLOW IT TO CONTROL ME. YET???? IT IS HARD WHEN YOU HAVE PLANS AND HAVE TO CHANGE OR CANCEL THEM BECAUSE A SYMPTOM HAS COME UP THAT YOU CANNOT OVERCOME. YES, I THINK ABOUT IT ALL THE TIME, BUT WOULD LOVE NOT TO.
HOPE YOU HAVE A BLESSED THANKSGIVING.

[Sequoia]

I rarely think about it, unless I'm researching something or I'm on the board here.

I do pay attention to it, but I refrain from commenting mentally (thinking) about what I see/feel, as much as I can.

Our internal monologue, the incessant mental chatter that goes on during every waking hour, colors the way we see ourselves and the world around us. If that monologue includes a lot of thoughts about MS, we may find ourselves getting stuck in identifying with our disease, and in seeing the people around us in terms of their relation to our disease (caregivers, co-workers, affected family members, etc.).

I may be trapped in a body that has MS, but my mind is free...or at least as free as I can allow it to be.

[kate8103]

Hi Jill,
Wow..I feel the exact same way. I don't want to think about it...but I do...ALL THE TIME! I was just diagnosed in late April so it is pretty new to me. I am not one to sit and feel sorry for myself. I work full-time and have a 7 year old to chase around so I don't have time to do that. On one hand, I wonder if I have truly dealt with the diagnosis but on the other hand, like I said, I am not one to dwell on it.
Maybe it's because I still have slight residual symptoms from my 'episode'. Nothing major but just slightly annoying enough that I can't help but think about it.
The hardest part for me is the "FOREVER" part of MS. And the unknown. Will it progress? Will I be in a wheelchair? The neuros in the hospital assured me that mine was mild and that I would be mobile for a LONG time...but from what I read, how do they know that? I don't know. The whole thing is hard to stomach....
Wishing you luck. You are NOT alone

[Debba]

Hi Jill,
Once again, I think we have something in common. Since my dx (in July) I have not had a ton of symptoms. When people ask me how I am feeling, I usually say good, but to my closer friends I say that mentally this disease is kicking my butt. It is all I think about too. If I see someone with a cane/walker/wheelchair, I wonder if that will be me soon. It is so hard, it is good to know that others feel the same way.
Debba

[jskmssss]

Debba

Hi,

I could have written your post myself. I am just at the probable stage and I think about it constantly. I look at
everyone who is using a cane or walker and wonder if they
too have MS. I also wonder if I will end up in a wheelchair. I don't think my coping ability is very good. Every ache, unusual feeling or pain, I wonder is this from the MS.
Hang in there. I am so happy to be part of this wonderful group of people.

[Jules A]

Its been over 5 years and I still think about it all the time.

The good news is that it does lose its shock value compared to when you are first diagnosed. The bad news, imo, is that it has become a part of who I am.

[Alicious]

Hi Jill,
Once again, I think we have something in common. Since my dx (in July) I have not had a ton of symptoms. When people ask me how I am feeling, I usually say good, but to my closer friends I say that mentally this disease is kicking my butt. It is all I think about too. If I see someone with a cane/walker/wheelchair, I wonder if that will be me soon. It is so hard, it is good to know that others feel the same way.
Debba

This EXACTLY. It can't be good for our mental health long term, but right now in the thick of early diagnosis, it's hard to do much else.

[jamilea]

Thinking of you Jill. I hope that your time processing everything goes well, and that you learn many things about yourself. Take it easy. One day at a time

Love,
Jami Lea

[fina66]

I know exactly what you mean.

I agree with all of you. I can't stop thinking about it. As busy as I am working and taking care of my home and my family there really is no time to think about how depressing this dx really is. Every little ache and pain is it MS getting worse? did I just develop another lesion? I am stable and haven't had a relapse. I feel great and strong and normal could they have misdiagnosed me? Then there are days when I am so fatigued and no strength what so ever I feel light headed like my sugar levels are dropping I close my eyes but lose my balance a bit then I know there was no mistake! then I know how sick I really am. My feet have been numb now for 15 months. My hand has been numb just as long. I have learned to accept the feeling of numbness somedays it makes me crazy I just want to cut them off for a moment just to not feel the numbness and tingling it won't stop. Somedays I feel content and feel like I have accepted and feel peaceful, but it doesn't last. My job doesn't know about me. I don't need to tell them. when I am there I feel like I am walking around with this deep dark secret but it's my business. I do not need modification in any way so there is no reason for them to know. There are days when I feel like it's stamped on my forehead and someone will see it. sometimes when I am at work too long I feel like I am not making sense. my words are distorted I know its because I am tired. I know what I want to say and I see the sentence in my head but it doesn't come out that way.
That has never happened to me before. So when little things are happening that have never happened to you before, how can you not think about what has really happened to you? How does one stop thinking about the monster inside them when the monster won't let you forget he is there?
somedays I am so sad. somedays I am so thankful.
When I step outside the box and look at my beautiful family and think about how it could be so much worse I count my blessings, I would rather it be me afflicted with illness then my children or my husband therefore I embrace it.
Then tomorrow comes and its the same thoughts all over again.

[fishead]

I just realized that I wrote in another post that I feel like I'm in denial, I don't even want to think about MS, but then again, I realized that I think about it all the time!

Anyone else feel this way? I mean on one hand I am so busy with my life, family, work, etc...that I don't have time to even think about it, and I don't want to. But, then again, I find myself thinking about it all the time, make sense?!

Jill

Jill,
This disease seems to be "all-encompassing". MS never lets you forget it has its claws in you. I am sorry you have it, it makes sense that you ponder this question, but in time, it gets to be more "realistic" and also seems easier to deal with====aka you find a "routine" and it becomes "part of you".

Namaste
LaTish

[jillmb]

kate, debba...

Omg, I am the same way! When I see a wheelchair, cane, walker, etc...I find myself thinking if I am going to end up that way, why are they using them, do they have ms too? It drives me crazy! Thanks for your replies :-)

[jillmb]

Thanks...

Thanks everyone for your replies! It means so much to know that I am not alone. I know that it is just such a major thing in my life right now, especially being so new. I am hopeful that it will change and I won't be so incredibly focused on it in the future!