I do understand what you are saying. I also feel like my MS diagnosis and symptoms are dominatiing my life right now and though I'm trying not to, I'm starting to feel defeated by it and like it is a death sentence of sorts.

I've had diabetes (type 1.5) for 11 years and have dealt with all kinds of diabetes-related symptoms, but none of those, not even the most extreme (loss of some vision and resulting surgery) have scared me nearly as much as MS.

From what I've read here it seems like any part of me is up for grabs and might either hurt, twitch, burn, or go numb. It seems like I'm now sandbagged with depression and anxiety - things I felt in the past but never to this extent.

I worry about the difference between symptoms and flare-ups and still don't know that I know the difference. I don't want to complain constantly about sypmtoms, but I also don't want to ignore a flare-up and have something permanent happen.

I used to think that diabetes was the worst thing I could have because it impacted every part of my life, but now I think the MS may worse - partly, I admit, because it is new and I don't know what to expect of it.

Do these feelings of physical pain and anxiety become my new normal? If so, I don't know that I want to live this kind of life. I don't feel normal, or good, or happy, or optimistic at all anymore and I hate living like this.

What do I do if it doesn't get any better than this? If I have a flare-up which can't be treated because I can't take steroids and it leaves me permanently disabled?

I'm really scared.

I think it did for the first couple of years after my DX. It's a learning curve..I had to figure out my life all over again. I put limitations on myself. I had friends blow me off. I lost my career. I gradually grew out of making MS my identity. I no longer walk up to people and say, "Hi, I'm Jen. I have MS." Now, if it comes up, no problem. It just takes time, and a little self awareness.-Jen

Jen,

You mentioned that you lost your career (and I noticed another post about who is still working or not).

May I ask what finally led to you not being able to work?

I love and need my job and this is yet another thing that worries me.

How were you about to stop working and still able to afford to live?

I'm only at the very start of this rollercoaster, having not yet seen a neuro or had an MRI to confirm MS. However, I already find that I spend a lot of time researching MS, basically in an attempt to prepare myself psychologically and also so that I have a list of questions to present to the neuro. I'm currently managing to continue with my life as I would have otherwise, but with our 3 girls (all under 2 yrs), I have to pace myself now or I find I end up fatigued and/or sore with burning etc. As for med-long term plans.... I intend to perhaps do things EARLIER (ie move back onto a lifestyle block to enjoy my horse!) JUST incase I worsen and can't do it later. I keep telling myself there's no reason why I should get any worse, and hope that attitude / reality won't change come diagnosis time!!! I'm managing to open up to hubby regarding how I'm feeling (emotionally rather than physically.... I don't like to tell him about all my symptoms, as it's just more of the same for now.) Anyway, in short... I know precisely what you mean!

I can relate..because that is all I do now age 52 but when the doc first told me in 92 "probably ms....I sure am glad I wasn't stricken bad or permenently and that I did NOT research the disease! Because it bit hard last year.

YES I DO FEEL THE SAME WAY. I'M TIRED OF TRYING TO LIVE MY LIFE AROUND IT. BECAUSE THERE IS ALOT OF THINGS I CAN'T DO NOW. WHEN I WAS ABLE TO DO IT. WHEN YOU GO TO DO ANYTHING YOU KNOW PEOPLE ARE WATCHING YOU TO SEE HOW YOU'RE HANDLE IT. SOMETHING ELSE, I GET SO SICK AT THE PEOPLE THAT TELLS ME TO OVERCOME IT AND BE HAPPY AND LIVE. THEY CAN SAY THAT TO ME BECAUSE THEY DON'T HAVE MS. I WONDER THEN WHAT THEY WOULD SAY. SOME PEOPLE HAS NO PROBLEM LETTING YOU KNOW THEY DON'T FEEL GOOD, AND OTHERS JUST PUT ON A SHOW....

For me the worst thing about this ms is that even though I have been in remission for years with no new symptoms...
Always wonder what will happen next & when.
And that leaves me always feeling scared.

Hi Strong Woman - I can really relate because I was your age when I received the diagnosis (actually 19 when had first episode of numbness, not diagnosed until optic neuritis at 23). The good news is that now, 20 years after my first episode, no one would know I have MS unless I choose to tell them.

I think it is important for you to NOT focus on all the possible "bad" outcomes and start focusing on what you love instead. When I first learned about MS, I was terrified, as there were no effective drugs then and the only person with MS I knew was an elderly friend of my grandmother who was in a wheelchair and had no bladder control.

Fortunately (by serendipity?), for some reason I ran into the book "Travels" by Michael Crichton two weeks after receiving my diagnosis. It was odd, because he was never an author I really liked, and I rarely read autobiographies back then. Not to spoil the book for you, but he provided inspiration to me at a critical time by showing that by taking risks and following his passion (ending his high stress career as a physician and choosing to write novels) he ended up virtually MS-free (not to mention rich and famous!).

Please don't discredit the value of using MS as an opportunity to make positive changes to your life. (And I do not mean to imply by this post that those more severely"disabled" MS'ers have in any way failed - just that when you have MS, you can choose to realize just how precious life is, whether you are in a wheelchair or not, and use MS as an opportunity to make the most of your life.)

Should you leave your job? Not if you enjoy it! But if not, I would seriously look at discovering what activities would bring you the most joy. After reading Travels, I quit my high stress job banking job in Manhattan and chose to pursue a career in natural medicine. (By the way, I am now in another "high stress" job as an attorney, but can handle it now!)

One more thing, for the first 7 years or so of having MS, I didn't tell anyone (except on a "need to know" basis - spouse, select bosses, etc.) I truly believe that by not openly identifying with the disease, my health remained much better than it would have otherwise. If you are interested in this topic, I recommend anything by Caroline Myss, who talks extensively about the dangers of "woundology" (identifying ourselves by our wounds instead of our strengths).

Anyway, I'm rambling on now and have to get back to work!

Rachbach...I was in a very high pressure career. I traveled all the time. I was in the middle of consecutive attacks when they let me go. I started another job in the same field...I was upfront about the MS, my boss had a brother and cousin with it. I did fine for about a year. Then...you know how it is.

I am very fortunate to have a husband who is able to support me. It was very tight for a while, especially paying insurance out of pocket, but after 4 years of fighting SSDI I finally won my benefits. We also have some investments that make it possible for me to stay home. Like I said...I know how fortunate I am. I had a few years when I didn't know how I was going to make it. Hope that helps.-Jen

I see your posts but I don't see mine from yesterday.
Strange but true

thanks everyone for responding. I'm trying to live up to my screen name and stay strong, but, I guess I just find it too difficult sometimes. But, I WILL TRY!!!

When I was 20 years old I struggled with this massive fatigue, and my left arm and hand kept tingling and pins and needles sensation. Had difficulty chewing and swallowing. I had trouble "keeping up" the pace with my classmates right before I graduated, and my then boyfriend turned fiance was having a difficult time with all of my could nots. Why couldnt I attend this? Why couldnt we go out to dinner? Why didnt i order that steak? Why dont I want to go on that fun hike like everyone else? Why did I always want to lay around all the time??? We didnt know then that it was Chronic Fatigue and MS symptoms. And I wouldnt know until 20 years later. And yeah, it does change your life. Some people are diagnosed later in life when they have had their college and work and built careers and marraige and children, and some people get diagnosed very early in life, or have the symptoms early in life and dont quite get to the work/career field. I tried working but had such a hard time keeping up with college, keeping going with a relationship, that everything fell apart and so early in life too. It helps to know what you are dealing with. For 20 years I didnt know the name of "it", just that I could feel it when noone else could understand me. I'm saying this to you not to lecture but just to let you know that I understand your feelings...I relate to it all so well. You pour your focus into these websites and pages because the MS is a part of you and it effects you and your life everyday and you want to learn more about it to learn more about how to deal your day to day life, how to create your life with what you have to work with. I work with my MS. I know what it is, and I learn how to work with it, to pace myself with what energy I have, and I have had to learn HOW to pace myself with what works right now. And some days I dont have energy to do anything and I feel like I'm just wasting away but I had to view my resting as a way of healing my body when it gets all tired out. I have learned from these wonderful people here at Daily Strength that there is so much life to live in different ways and how each and every one of us has talent and love and hope and even tears to share with each other. I love listening to music, I cant dance like I used to, I'll wipe myself out, but I love the music and I do things differently than I once did...and I have made some awesome friends from Daily Strength too.

I wish you well and big hugs Ellen

Morning,
Funny you should talk about CFS as I got stuck with that for years. My latest de-stress thing is 'rescue remedy. Sounds goofy but it helps. I was glad my son was 6 or so before my fatigue started. I am 51 now & have learned many strategies along the way. Ask & I'll tell you some.
Lorna

I have somewhat mixed emotions about MS being the main identity factor in our lives. Yes we have it. Yea we have to change certain things to live hand in hand with our chronic illness. I think we need to be careful in how we perceive MS and what may happen to all of us in the future. There is such uncertainty and saying that MS is a disability is true but at the same time.. in some kind of messed up way it is a blessing. We have been forced to deal with the confirmation of our diagnosis and now we have to learn to live with it. Yes we have no choice but to be in survival mode 24-7. We have a choice to make every day in our lives count.. on great days.. on bad days I know now that everything I do and say and how I treat my body and what I put in it counts. Embrace it and as hard as it is we still have to keep it moving as best as we can. I think a positive mind frame as HARD AS IT IS.. is so important in surviving this. MS is like the MEGA SALAD Super Sized of all annoying symptoms mixed in one and we also get to choose what sort of nasty dressing we want to put on it. Look guys it is depressing and it can consume our lives but lets not pity ourselves. We could be in far worse positions. We are alive and we are breathing. We are all here on this open forum for support and to support one another. Life is Beautiful and it still is even with our MS. (Stay positive you are not alone. LOVE THE JOY OF LIVING LIFE again. It gets easier)

Many people have issue with me. Why? B/c they feel that I exist in a realm of denial. But let me say this...I need my denial, it keeps me fighting.
I push everyday and I refuse to change. Don't get me wrong, I have had to make a few adjustments.
I have found that b/c I stay engaged in life, that it has enabled me to survive this disease. Our lives are unique and we must adjust. But when doing this don't forget the most important thing...and that is that you are alive! Take a moment and let that sink in. You are here, you get one life...live it! Live uniquely.
emmie