I absolutely hate MS!

[KatieAgain]

Hi Katie and everyone else!

I used to go to MS sites and participated in chats and bulletin boards, etc. I moved and .... all sorts of excuses. Lately, tho, I have been wanting to stay away because I am no longer positive. That positive outlook slowly flew away as things got worse. It didn't seem right to be negative.

At one time I built up walking from 50 ft to 3 miles. I haven't been able to walk more than 1/4 mile for 15 years. I went for walks when it was cool enough and not slippery. If I couldn't go out, I walked around the apartment bldg I lived in. I moved further east of Cleveland, OH, and live in a double wide with neighbors all around. I haven't had an aide for longer than 2 hours for over a year and now I have an aide 3 days/week instead of the 6 I am 'allowed.' I haven't gone for a walk for over a year.
I recently had an exacerbation and walking has been even more difficult since. Also, fatigue has become so bad that at times I start to fall asleep in my wheelchair - just out of the blue. I am not going outside by myself. Not safe. I have a raspy voice, now. My significant other wears 2 hearing aides and he doesn't hear me most of the time. I put off calling my parents who live in AZ because they don't hear very well. I couldn't take it if my mother couldn't understand me.

To top it off, a friend of mine has been diagnosed with optic neuritis and is going to see a neurologist at Mellen Ctr for MS. She is so negative all the time (even bofore this latest) I can't take any more. I'm having enough trouble keeping my own spirits up. She is pulling me down.

Everyone in my family and my friends have said they admire my outlook. Well, that is gone. Today I told her to blame the semis with "MS Carriers" on them.

Well, I am looking for the return desk. I don't want this! I made a comment to someone at my grandson's birthday - I don't want to get old in this body - and that person told my daughter. I've had MS since 1975 or earlier. I'm tired of it.

I am still healthy with a twist.

Jill

Jill,

Darling you are going through a very rough time right now...just like me. I started the IV steroids the other day and guess what? On top of the Central Vertigo I have ON. It was like a cataract being lifted from my eye. I had no idea!

We all have bad days, sometimes months. And yes, it seems like MS and Depression go hand-in-hand. And this disease does suck...no way around that.

I understand your frustration with walking, I was paralyzed for over 4 months several years ago from the waste down because of a flare. I am walking well now, but symptoms keep cropping up.

I am so glad that you posted on this board. Let it rip! Say it like it is. Holding it in will make it worse. Please post again. You have been living with this for many years and I am certain you have lots of wisdom to share.

And maybe if you let it out, maybe a few rays of sunshine will come back into your life and some of that positivity (which we all do have, though stubborn at times, mine is really stubborn right now) might just unexpectedly pop out every once in awhile.

And if you ever do find that return desk...please let us know. I think we all have been looking for it.

Katie
"Yep, I have MS, and it has Me."

[KatieAgain]

So glad you're on the right track and getting some help. And as an MSer whose mom has MS and is a retired VA employee I've heard a lot about the MS Centers of Excellence - I don't think it's strictly a VA thing, but associate one with the other.

Anyhoo, good luck!

Thank-you...mine is attached to a teaching and research hospital so I am being reassigned to a MS Specialist. I hope to stabilize quickly, the IV Steroids Rocked, and I start a taper tomorrow.

Katie
"Yep, I have MS, and it does have me"

[KatieAgain]

Katie, I hate MS too. I am also a veteran, and I wanted to say that I think my years in the military were the best years of my life also. Reading your post made me think that I like this site (in moderation!) for many of the same reasons. I can get to know new people who know exactly where I am coming from - because they are in the same situation. Plus, I can vent for exactly the same reasons. I hope you feel better soon.

I think I hate MS the most because it the gift that keeps on costing me bits and pieces of my life.

Hello fellow warrior!

And thank YOU for your service!

I have actually written a few hundred posts on this sight (under a different call sign) but had to take a break. It is a good forum. But I too, am going to be posting only in moderation.

I hope that you can consider me one of your new friends.

Katie
"Yep, I have MS, and it Does have Me."