I have MS, but it wont have me!

[azgraves]

I'm totally new to this site. I think I'm really gonna like it! Let me know a lil about you and let me get to know you!

[JerryD]

I am glad you found us. I am also glad that you have adopted doesn't have me' attitude.

This site is full of sharp people with strong personalities. It is also the best sounding board for the MS crowd. Sign in often. Good luck

[azgraves]

thank you

Thank you Jerry. I have struggled with MS for a long time in my short life. I managed to maintain employment up until recently. I suffered a rapid progression, resulting in a black hole. I continue to fight! I have a wonderful support system in my husband and children. I am currently on the brink of applying for disability, a very hard step (considering all I had known was to work), but necessary for my well being.

[Seasha]

Welcome to MSW, azgraves! Great that you have a good support system as that's really crucial.

I applied for disability 3 1/2 years ago and it was a tough decision at the time but I'm so thankful that I can now concentrate on my well-being with more exercise, better eating habits and having less stress in my life. If you have disability questions, we have an attorney, Rich Feingold, who answers questions in our SS Disability forum.

Good luck applying! Come back often and share your MS Story with us. We are a very supportive community here with lots of understanding people.

[Kittianne54]

I don't want to be a party pooper, but I've come to hate the phrase 'I've got MS, but it doesn't have me'. Now, after over ten years from dx, it does have me. I have ppms, and it's been a steady decline. MS is with me 24/7. It doesn't give me a break. I won't list the multiple 'gifts' it's given me, too discouraging, and we all know every case is different.

Hopefully, you'll have an easier course of the disease and MS World is always here to help you with the journey.

[Kalliope]

I know what you mean Kittianne54...

One day, when I was lying in bed, I read an article. It had the saying of how I have ms but it doesn't have me. All I could do was laugh at how ridiculous that was. The reason I was lying in bed was because I woke up and couldn't move my legs. MS didn't want me to walk-and I wasn't.

I thought about the times when it didn't want me to talk, swallow, move, think...you know, all the things MS takes from us-sometimes for keeps and sometimes just to show us it can. I thought about all the times I went to therapy and worked so hard to get back even half of what I lost only to havpppe MS take it away again, this time for good. Countless times I've learned to become "the new me" because MS took the old one.

If MS didn't have me I wouldn't need a team of doctors, a walker, a wheelchair, medicines, therapies of all kind, the list goes on and on.

I've decided that the people that use this term must mean that no matter what MS throws at them, they still plan on having the best life they can. That statement I am a firm believer in, but to say it doesn't have me-I've been on this bus long enough to know who's driving, and it isn't me.

Azgraves-I'm glad you found this site. I've found a lot of wonderful people and information here. It is a good place to find compassion and different opinions to help you see the many sides to things. I'm happy you have a good support system too. I thank God for mine every day.

[azgraves]

To Katianne and Kalliope

This is for a couple of precious ladies who, like a lot of us, life is overrun with all of the issues, health and cog probs, etc that Ms brings. Ladies, when I use the all too well known phrase, I have Ms but it doesn't have me, I mean know offense to anyone, including myself. The first time I heard this phrase was several years ago when i knew I was dealing with the symptoms of Ms, and was speaking with an Ms veteran that was an elderly lady. I was spilling all of my issues, heartbreaks and overall decline in my health and mobility.

She was kind, compassionate and concluded by saying 'my dear, you must understand, that although you may have Ms, it doesn't have to have you.' This conversation changed my life, for I had always been a firm believer and often said to others in counseling situations, 'its not about how bad things get in your life, but how you handle those situations that bombard your life.' Very similar concept. Although Ms has ripped and stolen so much from me that i treasure, although I have gone from athletic to a power chair, from doing everything for everyone in my family because i want to, to having to need much done for me, from taking one medication daily to taking 11 daily, from always saying that i would never be on a scheduled pain Med to being on one just to maintain some quality of life despite the 24/7 pain, etc...I choose to live by this phrase, although Ms has encompassed and suffocated every part of my life, I choose, mentally, not to allow it to be who I am...for, I am, as a person, far more than this disease!

So, ladies, I now hope you see that i meant no offense! It is just a way I choose to cope with life as it has been handed to me.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Kalliope]

I take no offense and didn't mean any...

You may find this strange, but I was curious as to why someone says this phrase. Thank you for telling my why you do and I'm glad it brings you comfort. I guess I don't see as much similarity in "I have MS but it doesn't have me" and "'its not about how bad things get in your life, but how you handle those situations that bombard your life" as you do. The second statement makes sense to me.

I meant in no way to belittle how you choose to get through this disease, but only to understand why this saying is said by so many when in my experience-ms clearly has decided when, where and what it wants from me and hasn't hesitated in taking it. I guess I am seeing it more on the physical level and not the mental one. Physically, MS does what ever it pleases, mentally, is where becoming the "new me" comes in-again and again and again.

I read a lot of posts that have sayings at there closing (sorry, I know theres another name for it but can't find the word right now.) and have found a lot of them to be uplifting, some hilarious, while others thought provoking. Some I wonder where they came from...what the story behind them are. I've read and heard people saying the I have MS phrase before and wondered about it too. I truly meant no disrespect to you.

As I had said previously-"I've decided that the people that use this term must mean that no matter what MS throws at them, they still plan on having the best life they can. That statement I am a firm believer in."

We think a like in some ways because even though, sadly, we endure a lot of the same things MS has sprung on us, we both strive for the best life possible. Read some of my posts, I'm not all gloom and doom. I try to look for the wonderful things in life, appreciate those that I love and show them in anyway I can how much I care, find things to look forward to and celebrate life as much as possible all while juggling the never ending horrific pain, the exhaustion, the simple pleasures that have been stolen and all that comes with what has now become the constant decline in my health.

I truly didn't mean to offend you. Thank you for telling me your story of why the saying-you have ms but it doesn't have you-brings you comfort-when you didn't have too.

[Tomjadg]

I have to agree with Kalli, and several others that find this phrase highly annoying.
MS does have me, and decides what I am able to do.
Positive thinking, prayers, and good wishes have no effect on the nerve damage.

I would love to be able to do photography again.
MS has taken away my abiliy to use the two hands needed, because one has to have a cane.
Focus is impossible with my vision effected.
I can't travel any more to take the pictures.
This is reality. No amount of positive thinking can change that.
It is just a brave sounding phrase people use. Whatever works for you I guess.

[BarkingDogs]

I don't want to be a party pooper, but I've come to hate the phrase 'I've got MS, but it doesn't have me'. Now, after over ten years from dx, it does have me. I have ppms, and it's been a steady decline. MS is with me 24/7. It doesn't give me a break. I won't list the multiple 'gifts' it's given me, too discouraging, and we all know every case is different.

Hopefully, you'll have an easier course of the disease and MS World is always here to help you with the journey.

I'm with you on this. I think I have a pretty positive attitude most of the time, and as you point out, everyone's MS is different--but as more and more time passes, it is apparent that "my" MS has got a hold of me and its not going anywhere any time soon.