This Is MS Multiple Sclerosis Community: Knowledge & Support

I like to think I'm a "semi"normal person. Today however, I thought to myself, "I wonder if everybody thinks about their MS as often in a day's time as I do."

When I wake up, I lie there. For that first few precious seconds I really don't feel like I have anything wrong. Then I move. Spill my water on my way to shutting off the alarm clock, not being able to feel the tag in my sweatshirt to know if it's insideout or backwards (my hands are numb for the most part), dropping my toothbrush, wrestling with my curling iron, TRYING to put on makeup (I usually look like marilyn manson by the time I'm done), droping my coffee cup, keys, gloves, sliding off the door handle to the car, oh I could go on and on.... (don't ask about the unfortunate clash of the cell phone and the mud puddle ) by then I'm usually pretty ticked at myself and the world in general. Heck of a way to start the day huh?

I have tried to adjust my attitude & even get up eariler to allow for TONS of time so as not to rush, never changes how things go. I just try to do more things that usually remind me just how badly my hands don't feel. They work, (I know, that is a positive) but geeeeesh.

I work so I have an entire day of dropping phones, pens, papers, banging my hands on corners, stubbing my toes, here again I could go on......

I come home and just want to go to bed. I'm tired from being me all day. I actually was invited to go (yes indeedie doo) BOWLING a couple weeks back. I laughed and politely declined (this person has no clue I have MS BTW) but you know, I use to bowl in three legues a week, how I long for the day.....

So is it just me??? Am I obsessing??? How do ya'll get over/through this phase??? I know it doesn't get any better, the Dr told me this is as good as it gets for me. How do ya'll do it?? At this point cranking the tunes and singing my lungs out on the way to work does pep me up some, till I can't get the back door open to go in at work!! HAHA.



Peace!!!!

Vidalia, I think we all feel like that at least some of the time. I have my good days and my bad days. On a good day, I can laugh at those things-on a bad day, it can send me into a depression spiral. I try to stay positive and not let small things get to me. There are plenty of major things to worry about. Especially when I'm in the middle of a flare but I think I know now what to brush off and what to pay attention to. Whatever you find to get you through-use it. This forum really helped me because it makes me feel hopeful to see all the research that is going on. Don't let it beat you and don't give up. I believe help is on the way

hi v you're not alone, i always wonder if the ppl at work think i'm worse than just being not used to a new job. when i stop moving always sussing how the spinal lesions are doing, figuring out where the tingling is or isn't. continually rubbing my fingers together to try and see if they're getting any better. wondering what percent of the feeling is gone in my right foot. wondering if that little blip in my vision was something to worry about. etc. etc. etc. at the same time, i'm back to taking a lot of things for granted. used to have to think pretty hard to target say a mug and pick it up. no biggie now. but i think once you're off "normal" you do notice it all the time.

Every day and all the time - I dont think I dont think about it for many minutes at a time

But hey who wants to be "normal"? Normal people dont do science, normal people dont pen novels, normal people dont produce wonderful music or paint beuatiful pictures or write interesting letters to friends, or even think about themselves much. And most normal people dont have the courage to poke their head above the parapet and post their feelings on an internet bulletin baord - like you have

Normality is not one-dimensional.

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John
I am what I am

In our house if I'm sick I eat my chicken soup and I'm fine so I never give it another thought. When John is sick I'm combing the net to see if it is MS related and or what the repercussions might be to his health and IF we will go into a relapse. So far none of that has happened but the panic is always present if John comes down with something. Right now he has a sore back and since Robbie had one too it could be MS related couldn't it?:D On the other hand it could be the fact he put up all the Christmas lights and we are 2 storied and an A frame so huge pitch. I don't think it can be helped as KNOWLEDGE is POWER and MS is all about QUESTIONS not ANSWERS. That's why I handle the stress for John you see with MS he is supposed to stay stress free

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Your post brought to mind my daughter's recent experiences with an "out of the box" natural treatment. (I have posted about it pretty much everywhere on this site so I won't bore everyone with "repetition".)

I will only say she is experiencing remarkable results, the first reminding me of this post. She was sitting in a chair holding and petting one of her cats. All of a sudden she realized she could actually "feel" the cat's fur--the first time in 2 years! It was a truly exhilarating moment! And one only you wonderful folks here could truly appreciate.

As a mother, my tears flowed quite freely!

I don't know about my daughter, but can assure you there is not one second of one minute of one hour of one day that I am not thinking about this hideous disease and the cost to my beautiful child! I choose to fight my fight with education--as much as I can possibly get. This site is truly remarkable for that type of thing. Lots of really intelligent people here and I remain constantly impressed!

My best to all of you..truly!

Hi Vidalia I think about it 98% of the time and live it 100% of the time...

v,
i think we all think about it..i think i would have to say i have it in the back of my mind every waking hour and try to keep the negative thoughts away..but ya do have them.....when people ask me how i am doing i say still breathing..now weather they know about my problems or not they just smile at me and laugh...some days i laugh with them other days i want to scream at them its not funny..its a statement to convice myself i am okay and doing well..and man am i bad at fooling myself.....i swaer one of these days the one side of my brain is going to kick the )(*& out of the other side for trying to be postive.....lol...but we all have good days and bad.....i also wake up thinking there isnt anything wrong...and then i try and move....some days my right leg moves okay and i can just get up but other days it dont move for awhile.....so think about it all the time just try and not let it drive me to crazy...so keep your head up....

chris

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waiting for answers

Thank you all for the replies. Many things ya'll have said thus far I shall mull around in my headI feel. There is wisdom in the experiences of others for me. I am pleased and comforted by this place.

Oh yes, I too know the wonder of actually feeling the soft fur of my kitty cat when I am granted that pleasure. When I get an ache or pain, I too question "is this MS related or something else??" My family Dr fuels that thought because I believe she's scared to death to treat me for a cold as she consults my neuro every time I walk in the door. I personally don't like my neuro and the least amount of contact I have with him the happier I am. He's the only one around here, so I am stuck with it.

I believe I do need to clairfy the fact that my life does not totally consist of a "oh poor poor me I have MS!!" attitude, I do think about it a lot though. It doesn't totally stop me, I just have inconviences that seem to pile up in my brain and ergo my original post. I just spill over. Today wasn't that bad, it was a good hair day. I opted not to temp angering the make-up Gods and went commando. I put on a bright sweater instead of my usual (black) and wore comfortable shoes. Head noise lowered, better attitude, day went faster and it was less hard being me.

I'm an "out of the box" thinker myself, I've always been that way, and I do not believe I am one dimensional. (I do have to ask, what's a parapet?? JFH???) Thank you all, I look forward to reading and posting more!!

Peace, V

I am to the point where I think it is keeping me from living a 'real' life. I think about it constantly, not because I want to, but because I have to, its always there. Its there because I know its there, not necessarily because I'm feeling the effects, but since the day I was told, its been a huge weight on my shoulders. And I'm pretty lucky I guess, well compared to others, and not as lucky as some. I am fixated on what is coming, the doom that is on the horizon, I will never be able to do this, I will never be able to do that, I will never meet anyone (I'm divorced) because no one will want to be with me because I will most certainly be a burden, I am going to be alone. The uncertainty is overwhelming and all consuming. I'm overweight and very unhappy about it but I'm not doing anything to change that. Exercising is hard enough to be motivated about without the lingering fear that I can't do things, I will fall down, embarrass myself, or set off an attack. Then I start thinking about the future and money and what will I do if I can't work for the next twenty years? All this focus on it is very exhausting and draining. I'm very unhappy and just see the future as a slow deterioration of body, brain and pride. I've been waiting for two years for my mindset to change, to accept things and get on with it. But I never do. I know I should try to work on my outlook and mood and that I'm likely reaping what I sow to some extent, I'm putting a lot of negative out there because that's what's inside me.
No pep talk response needed. It is what it is. I do feel sorry for myself.
Every day. And I feel sorry for everyone else who's facing the same thing. I do have a 'poor me' attitude, because this sucks.
*lol* And I'm not even having a bad day, just a day like any other.

Wow Mary.I pray your days get better.

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Mary--You are completely correct--this MS sucks! We can only do our best each day, each moment. And sometimes that means dissolving into tears!

We cannot be optimistic all the time. But we just keep trying, keep hoping. As dark as the present is, I truly believe the future will be better. It is human to feel depressed at times, but I think there is something in us that reaches for that hope, too.

I think help is coming for us, Mary. You will make it! I think good things are in our futures!

Mary what you said about a real life is so true it's gone, when you said about being alone, we all feel that no matter who is in our lives. just keep writing how you feel and let everyone here share your pain. rob

MS can take your coordination, But it can't take your spirit. Only you can give up your spirit. Fight for your spirit as if your life depended on it. The reality is, that it does.

napay

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

A parapet is the little bit on top of a castle (or in modern times trench) wall that protects the defenders. See http://en.wikipedia.org/wiki/Parapet.

And hope I didnt give offence I was not suggesting that you might be one-dimensional just that popular opinion thinks of normality in a very linear way. And that IMO is a v. wrong view of the world and the people in it.

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John
I am what I am