Struggling and feeling a bit "lost"...
 

I was diagnosed with RRMS about 2.5 yrs ago, and things were pretty much fine for me up until the past 4 months or so.

I had a baby 9 months ago, and had the post partum flare and thought it was over. A few months ago, I started having more and more trouble walking, legs really stiff, knees not bending, that kind of things. I've graduated to a scooter now, and I can't help but feel completely lazy riding on the thing!

I know I NEED the thing, but I am only 32 and a not so long ago I was walking just fine! I can still walk, and I do as much as I can. The dr has given me Baclofen for spasticity, 60 mg a day. I know it helps, I can definitely tell if I haven't taken it, but I always hear about people with spasticity with alot of pain, and I have no pain. I'm not sure if something else is going on or what!
I told dh yesterday that I'm scared that my legs are going to stay like this. He told me I can't think about things like that, but how can I not?!

Anyone else feel lazy for riding a scooter, or am I just being stupid about this?

I almost got one at walmart when I was in the midst of my flare, and did not for the reason you say. I wish I would have. By the time I got home, I was so tired, I could not carry in anything, nor could I help put it away. I was done for 2 days all because I was being dense :eek:

If you have rrms, just think it is more than likely temporary. Do when you need to do to get through this time, then keep the scooter for the next time :rolleyes:

Save your energy for other things like paying with your baby!!! That is the important things. Walking is over rated sometimes (only sometimes, I know if I could never walk again, I WOULD NOT say that!!). For now, you need to save your energy reserves, and your scooter is helping you do that!

:hug: Hope things start looking brighter soon.
Connie

Have you talked to your neuro about Physical Therapy (PT)?

Exercise and stretching can be beneficial for spasticity. Not everyone will have pain with spasticity although it is common.

My legs are exactly like yours - stiff and my knees don't like to bend, I hate stairs and curbs but will do them. My legs have been like that for a long time.

When I was dx'd my neuro told me if I do nothing else, walk. That was in 1986 and I still walk. I use a treadmill and do quite a bit of stretching.

Will my approach work for you? I have no idea, maybe, maybe not. Each of us are different and what works for one will not work for someone else.

I need the stiffness it's what helps keep me walking. I have quite a bit of weakness in my legs and always have. If I lose the stiffness I will not be walking -guaranteed.

Again - talk to your doctor about exercise and/or PT

Jenn! This is huge! Talk to your neuro right away about switching from Baclafen to something else like Zanaflex. I was taken off Baclafen when it caused me WEAKNESS IN THE LEGS. It's actually one of the listed side effects!

Do you look at me when I'm on my scooter and think that I'm lazy? ;)

Jenn!
Jennjennjenn!

Dirty/condescending/second-guessing looks be damned. Get on the sccoter.

Which hurts more? These looks from strangers who don't know you and are ignorant and arrogant enough to judge you? Or how bad your legs feel later?

Moose has the MS too. And dirty looks don't count.

And I never gave you one of my patented big, warm, tight, hug, handshake and howdy, moose-size official type welcomes. This place is amazing!

You are not alone.:)
You are one of us.:hug:
And we are here to help.:grouphug:

I can walk (if I have to), sitting in this wheelchair seems to make walking harder, BUT I love being to get around faster, I have more energy and access to do things. More independence really. Power chair on order, insurance oked it, etc. Also buying myself a travel, breakdown into manageable pieces powerchair. Compared to before, get around more now and never realized how much of my energy was taken by my insistence of walking with walker. Was I trying to prove something? No more stairs anymore, DH had skills to build 1st floor addition for big bedroom and bathroom with wheelchair friendly shower. Use a shower chair now, but no getting over tub wall to shower!! I have MS, why not make things a little easier. (No, I'm not lazy)

I'm confused.....:Scratch-Head:

Why on earth would you feel lazy by using your scooter? You have MS. Yes, there will be days when you don't need to use it. There will be days when you know you need to conserve your energy and, therefore, need to use it. And there will be days when you'll need to use it all day. There's nothing wrong with that.

If you were perfectly able-bodied and used it because you just didn't feel like expending the energy needed to walk then, yes, you'd be lazy.

It doesn't matter what others think - anyone who judges you without knowing why you're using it really doesn't matter in the big scheme of things.

Welcome..:) I used to feel that way (lazy) and still do, on occasion, but, as Kicker said, I like getting around faster, especially to the potty..:D

Because of using my scooter so much, I don't walk as well as I did, but I feel better and not so exhausted, all the time, as when I was walking with walker.

I'm an old bat, though, and you are so young, so I do understand..:hug: I'm hoping that it's just temporary and when your flare is over, you will be up again, chasing that new Baby all over the house.:D

HIJACK!!!

Hey, I never got one either :( It sounds great!! Can I have one.

In the meantime, I'll give you one of my little, not so tight hugs...

:hug:
Connie

This is only a moment in time . . . and you will get past this. In the meantime, do whatever you need to maintain your strength for the more important things in life.

Use that scooter for going the distance! . . . but keep limber by stretching and/or getting as must exercise as you can too though (in SMALL DOSES). Scooter, stretch, scooter, walk, scooter, swim, scooter, work in the garden, scooter, play with baby in the yard . . . etc.

Cherie

I'm so glad I followed my MSW buddies over this way! Big hugs right back at ya Moose! You guys really know how to make a girl feel better.

The baby loves to ride on the scooter and push the buttons, especially the horn. LOL!
I think I'm just letting this MS bs get to me a little too much. I'm wondering lately if what I thought was a flare after the baby was born really wasn't, and this is my after baby flare. I can't wait for warmer, dryer weather so I can sit outside with the baby and let him play in the grass!

It's not helping that I've gained weight since the baby was born, but I'm trying Slim-fast since I can't really exercise too much, and so far, so good. And Cherie, you're right, scooter, stretch, walk... it's what I try to do. I generally walk when I'm doing something in a small space (the kitchen) and I try to keep up with some chores around the house. It makes me feel like a little less of a loser.

Thanks you guys!!

Oh honey, you are NOT a loser!!! I was glad in that respect to get the dx, cause I thought I was just dumb and lazy most of the time. I never had energy to do anything. I used to apologize to DH cause I was a bad housekeeper... I'd tell him I was having a bad day, but could never explain it. How many 32 year olds use "bad day" to explain 5 of 7 days a week... I thought I was just the laziest person on the earth. Now I feel a bit vindicated...

Don't ever think of yourself that way. Do what you have to do to keep you healthy, and do the important things. Dishes can wait a day or so before they stink...LOL

:hug:

OK, beautiful. Hang on. Here comes...

One big, warm, tight, hug, handshake and howdy, moose-size official type welcome to the site. This place is amazing!

You are not alone.:)
You are one of us.:hug:
And we are here to help.:grouphug:

Aww, thanks!!! I feel officially welcomed now!!! I agree, this place IS great!!! Lots of GREAT people here!!! So glad I am a part of it...

Jenn :hug:

You've GOT to get out of that mindset.....you are NOT a loser. None of us are. Just because we have MS and have to do things differently doesn't change who we are inside.

Do you perceive others who use mobility aids as losers? :confused:

Nope, I certainly don't perceive others as losers for using a mobility aid. I know I have to stop thinking that way, and I'm trying! This is the worst time I've had since my dx and I'm totally frustrated. Trying to think positive about the whole thing.

:hug: It's so hard - I know - and there are times when we get down on ourselves even though we know it's through no fault of our own that we have this condition.

You have a lot on your plate right now. New baby, trying to lose a little weight......some days even the most mundane tasks seem overwhelming due to the fatigue.

Keep posting and coming to this forum - it helps SO much. Just knowing that someone else is experiencing the same thing is sometimes all we need in order not to feel so helpless.

I hope you feel better soon! :hug:

just like AMN I also was remove off baclofen cause it was causing more troubles with my legs, right now i am on other meds plus kolopin(sp?),(tried a few other meds no luck) daily stretching and starting a water exercise program, exercising does help talking to the doc, is a good idea

Jenn, When using or thinking of using a mobility aid think of it as a quality of life issue -

If you didn't use the scooter would you be able to function right now? Could you do the things you do without the scooter? If the answer is no then at this time you need that scooter to function in your daily life - quality of life.

Positive attitude: I think everyone needs to have one. It can help many get through or deal with this disease and life in general but there are many who no matter how good their attitude is still struggle living with this disease on a daily basis.

I understand your frustration except I usually have anger at the same time :rolleyes:

This disease affects my legs the most and 5 of my 6 exacerbations have severely affected my mobility. It's not a positive attitude that has gotten me through those exacerbations, it's anger, frustration and determination.

At the time I'm dealing with the exacerbation there is not a single ounce of positive attitude in me. Positive flew out the window along with my mobility.

Getting angry works best for me although I don't try and get angry - it just happens. My anger is never directed at someone...well.....ummm....I have been know to curse my neuro when trying to walk since he is the one who told me to walk even when I don't feel I can ( I adore him :)).

My anger is usually directed at my legs and this disease. I might be odd but this approach works for me.

I will add - I shed a lot of tears during this process.

Hang in there, Jenn :hug:

Moose,

I always imagine a hug from you would feel like a big ole bear-hug.


Sally,

With PPMS I know there are no good days coming, just steady progression. But now I get to the bathroom quicker, kids and their friends take my chair and turn up the speed and laugh the whole wild ride, and I do have more energy for other stuff (no, cleaning is not one of them. Did make brownies the other day, does that count as housework? I was in the house).

I do try to use walker sometimes and stretch, but not as good (never really good anyway) as I was. BUT I do feel I've gotten more freedom and mobility with the chair.