Really.... is this me?

[DonnaH]

I had a break down moment with my partner. I was reading an article about a married couple, both have MS. The ups/downs and pure strength and love they have.
What got to me was how she was wheelchair bound and so dependent on help with EVERYTHING.
I head to the potty 20x a day(alone), shower daily (alone) with the help of grab bars,make our bed, make my our coffee in the AM, drive myself,stand to cook.

Story was: She DX 18yrs, he16yrs. The difference in abilities blows my mind. My question is, (which in my head I know there's no answer), but how long before these achy legs, weak arms, pins for feet, memory going to hell finally takes its toll. I do not (even though I know she will) want to become that dependent on others. I guess I'm just feeling scared and sorry for my partner. I think it's her and my kids that I feel the worst for. I've always been the rock, now I feel like I'm turning to sand. Hense the self pity, (Today) .

When asked how I'm doing the response is always, I'm fine. Well I'm not. I have never, much less liked whiners, so I don't. I suck it up and roll on, life still needs to be addressed on its terms. But damn why did my life game plan change.....?
So I guess after my ramblings my question is; since DX 6 mths ago, how long have I had it before someone finally realized its "this". Then how long has it been attacking me. Am I going to be one descends slowly, miserable. Or like some that's known for 20+ yrs and stayed strong? The unanswered questions drive me nuts.
I do not dwell or feel sorry for myself and give into it.. it's just the question, how long before the inevitable happens?

[Boudreaux]

No one is capable of answering your question, if fact we all wonder the same thing and we are all fine without being fine. You have to make the most out of every day, that's it and that's all. It hurts and I CRS but I get after it, daily. I also have moments where I wonder what's the use because I'm sure I'll go down but I snap out of it and get back on the path.

[Mamabug]

Yeah; we can't answer your question.

But, 17 years after my dx, here are some things that I wish I would have done differently.

1. Got on effective DMD sooner. Because it took almost 2 years for a dx, I couldn't control that. But I was on a DMD for 5 years after that which wasn't working for me.
- I wish I would have switched sooner.

2. I now eat no gluten, no dairy. It makes a difference in my symptoms and seems to be stopping, or at least, slowing, progression.
I got rid of toxins in my household and personal care products. No plastics in my kitchen. No microwave. Personal care products from natural health stores.
- I wish I would have changed my diet and lifestyle earlier.

2. I exercise regularly. My MS specialist says it delays progression, especially cardio.

3. I learned to prevent / manage stress. I say "no" when commitments might overwhelm me. I have myself. I meditate. I do chair yoga. I listen to calming music.

4. I plan activities that fulfill me and add purpose to my life. I volunteer. I socialize with family and with "right tribe" friends, etc.

[Carolinemf]

Me too- yeah.
(Ps- You guys are so eloquent. Beautifully written)
Can't answer that .
No crystal ball unfortunately.

And although i say 'good days n bad days', in reality its good years n bad years for the most part.

When i was RRMS i had some quite severe attaches that were very debilitating and even though the major symptoms usually eased after a week or two it took months (maybe years) to get over the weakness, fatigue etc that followed. By then I would have had another episode so they kind of blurred into each other.

I'm one of those look normal on outside people.
33+ yrs since onset of noticeable symptoms.
22yrs since official diagnosis.

Most of the time i feel luckier than a lot of other mser's i come across , including on here.
Unfortunately this 'lucky feeling' also comes with guilt because i'm not as badly affected as some others. This kept me very isolated for a long time and staunchly refusing to admit that i was a member of our "club" .

I am progressing now without relapses and i find i am worrying about things in a similar way to when i was RRMS.
I had some pretty bad RR's . Does that mean those areas of damage from back then are going to slowly bring back the RR symptoms? On a permanent basis?
I don't know. Docs don't know. Researchers don't know. No one knows.

So- no comfort there. Sorry.
But DonnaH --- NOTHING IS INEVITABLE!!!!

You may be having a 'bad year'.
SHE may be having a 'bad year'.

I hope for all of us that we are just having a 'BAD YEAR', a not so bad one around the corner.

Try and focus on the 'him' type of mser in your story.

It helps to get mad!!

Caroline

[pennstater]

I noticed you were diagnosed 6 months ago. I know for me, the first year was a wild emotional roller coaster. It was during this time I would envision the worst prognosis. Every little change, I was hyper sensitive to.

The second year was a little better, and by the end of it, had come to some type of acceptance of living with the unknown. MS became part of my life, but not the focus of my life. That being said, with every relapse, my kind would again wander to negative thoughts, helped by steroids of course.

When I do feel this way, I let let myself fear it for a day or two. Then I remind myself what my neuro would tell me when I would pester him in the early days for a prognosis: noone, MS or not, knows their future. I could leave his office an get hit by a bus or car. He would remind me that those possibilities didn't stop me from leaving my house and driving or riding in a car. So treat MS the same. Live your life. Don't let your mind limit you before your body does. Plan for the worst, expect the best. It is okay to feel that fear, but don't let it control you. I really miss my first neuro - 5 years after his retirement and I still draw on his words.

We do all understand your thoughts and fears. This is a great place to get support from others who really get it.

Try to focus on what you can control like diet, exercise, activities that make you feel better. Volunteering helps me too. Don't be afraid to say no to things when you need to. I struggle with that last one, but am getting better. Hang in there. Hope to see more posts from you.

[kittysmith]

It's scary at the beginning.

I was diagnosed in 2008, but had symptoms much earlier. The diagnosis was out of the blue for me. I had a blurry eye, the next thing I know, I've got MS. I was devistated and confused.

First, I was wondering when my ability to walk would go away. Then, I was convinced that I had to take 3 hr naps every day to stay well rested. I finally realized I was blowing my MS diagnosis out of proportion. I have RRMS. Some leg spacticity, heat sensitivity, fatigue, and a neurogenic bladder. I've had a few relapses with ON, but my sight has come back every time. I have a pretty mild case.

It's scary. You feel like the rug has been pulled out from under you. But, it will eventually become a new normal. There will be days when you will hardly think about it. Good luck and keep asking questions.

[REG53]

Hello DonnaH, I can only tell you about my journey. I had my first sx around 1976 but I wasn't dx
with ms until 2004. I had sx's thru the yrs. that would come and go and ms was never mentioned.

About a yr before I was dx I started having drop foot and was in a afo.

I was strong for about 27yrs.

You enjoy and live your life to the fullest and I wish you all the best.