[fouf]

Hi there, I've been living with MS for about 1 year 1/2 and not many people around me know about it. I have problems accepting it maybe.. Anyways, just recently I've put some words to what I feel every day, all day living with this desease. Sometimes it helps when I try to explain it to someone.

I feel like I'm constantly walking towards a cliff, but thing is, I always stay about 10 feet from the edge, no matter how many steps I take. I'm expecting to fall in but I don't, I wake up everyday feeling the same as I did the day before. I KNOW I will fall in someday, I just don't know when. Even if I want to stop walking towards it, I can't. It's so scary.

I'm hoping some of you can related and perharps share what your feelings are?! Thanks!!

[Kitty]

That's a good analogy. Very accurate.

I've often described how I feel as running in sand underwater.

You wear yourself out quickly but you don't really get anywhere.

[poetic license]

Hi fouf,

We're similar--I'm 25 and just developed MS after the birth of my 2nd child.

I totally agree with your analogy. I have these passing fears that I'll just wake up one day blind from optic neuritis. Oh, and my oh-so-kind neurologist also had to scare me with the thought of dementia.

I hope the disease is not making it too hard to care for your child(ren)... it's rough with little ones who don't understand what's going on. When I was in the middle of my attacks I'd drive myself and my son mad trying to keep him from stepping on or touching my numb foot. It would aggravate me so much, but he obviously couldn't understand.

[NurseNancy]

hello. i read your post and you mention that you wake every day the same as before.

i know what you mean about walking toward the unknown and the future but right now what you're saying is that you're stable.

if i could say anything to you it would be to try to stay in the moment. no one, not even healthy people, know what the future holds. fear and trepidation robs you of your personal power to control this disease.

i've learned that i deal with things as they come up. make adjustments as needed.

and, it doesn't hurt to do some short term counseling to help you deal with your fears.

hope to hear more from you.

[SallyC]

I hear you, Fouf and concur. I'm kinda beyond those kind of dreams now, though.....I'm in the future of MS, you guys dream about now. 45 years since my first MS sx and still counting..

I want to reassure you, because I still haven't reached the edge of that cliff, but I am still walking through sand in the ocean, as Kitty put it..

Judy also has great advise...Live in today and each day as it comes. Some days will be better than others, but worrying about what's to come is wasted time.

Having young children is rough sometimes, but you'd be surprised how aware they can be at what's going on. My Grands are from age 3 to 18 and they have all grown up with my MS. They have become very understanding and protective....especially the young ones.

Keep talking with us, we are Family here..

[Debbie D]

I just got dxd last November...it was good to know what was up, but yet I didn't want MS...
It can be difficult to try to live in the present, but it's all you've got. The past is over, and we're not guaranteed the future.
I try not to allow the disease to control me...although sometimes it is difficult.

Keep in touch...there's a wealth of info and support here...

[gonnamakeit]

Originally Posted by SallyC

I hear you, Fouf and concur. I'm kinda beyond those kind of dreams now, though.....I'm in the future of MS, you guys dream about now. 45 years since my first MS sx and still counting..

I want to reassure you, because I still haven't reached the edge of that cliff, but I am still walking through sand in the ocean, as Kitty put it..

Judy also has great advise...Live in today and each day as it comes. Some days will be better than others, but worrying about what's to come is wasted time.

Having young children is rough sometimes, but you'd be surprised how aware they can be at what's going on. My Grands are from age 3 to 18 and they have all grown up with my MS. They have become very understanding and protective....especially the young ones.

Keep talking with us, we are Family here..

My 3 year old granddaughter always wants to push me in my wheelchair and will become quite vocal if any one offers to help her. The problem is that she can't see where she is going, so I have to keep both hands on the wheels just in case we go astray. I know what you are talking about, Sally.

gmi

[azoyizes]

Fouf, welcome to MS NeuroTalk, if I haven't welcomed you already. If so, then double welcome!

Wow, you really said it like it is. I was diagnosed with MS nearly 20 years ago, and I've been getting worse the last six years or so. I still worry about not being able to ambulate and about going blind. Can't help the thoughts that pop into your brain, and sometimes stay awhile.

You just have to keep going. Don't ever give up, just keep getting back up.

We are here for you.

[lady_express_44]

Hi fouf and welcome to the forum.

I have had MS for at least 18 yrs, and symptoms that I chose to mostly ignore since the late 70's. In fact, I never accepted the dx till 2005 when I was forced to medically retire ... and I still sometimes go looking for another medical possibility.

There have been a few very rough times, several not so good, but mostly not so bad. I've had to grieve my losses on a couple of occasions, but once I've done that, I tend to move onto the next phase.

As Judy/NN mentioned, live in the moment ... even if that moment is a difficult time. Personally, I believe we need to grieve fully as much as we need to come to a point of acceptance. Sometimes it seems like we are a ticking timebomb, but over the years you do learn to trust that tomorrow is just another day.

I have raised two kids mostly on my own, and they are doing well. It is important to rest when you feel you need it, to ask for support (don't try to be superperson), and to continue to do what you can when you can. Consistency in the early years with the kids, has turned out to be my saving grace.

Cherie

[fouf]

Thank you for all of your replys! The feeling of not being alone is a very powerful one!

I can relate to most of your feelings and visions of the disease!

My biggest fears are going blind and not being able to take care of my daughter. I'm a single mom of a gorgeous 19 month old.. Obviously she is motivation enough to stay positive.

I think the fear comes from deep deep inside, since you know that you can't really do anything about the disease. You know worst days are ahead. Even if you smile and say, Hey! that's the way my life is.. might as well just live with it and stay positive. You still know you're going to fall down the cliff and be unsure of how you'll be after the fall. I guess I hate not being in control and not knowing. Makes me feel weak in a way!

Anwyays, again, thanks to all of you! I really appreciate your responses!