Hi my name is MS and I have Tara

[alliesmommy]

Never in my wildest dreams when I went to the doctor because of numbness and tingling in my legs and groin would I hear the words.... you have Multiple Sclerosis. Wait... What?? I have what??? it was like an out of body experience.... but I'm only 47 ! This can't be happening. My entire world crumbled in a matter of seconds.

I realized that I have probably had it for years prior to the dx since I have seen such notable changes from 10 years til now but it doesn't change the shock of actually getting the dx and hearing those words out loud for the first time.

I have always tried to maintain the attitude that I have MS but it doesn't have me, but if I am truly being honest with myself, MS does have me............

I used to Taebo 6 days a week for an hour each day( I was even on QVC and met Billy Blanks) now I can hardly walk on a good day and have gained 60 pounds because I can no longer do any kind of exercise............ MS has done that to me.

I used to have a thriving pet sitting business that I LOVED but I can no longer do that because who wants a pet sitter that can't walk their dogs............. MS has done that to me.

Anytime anyone sees me or talks to me on the phone, they always want to know how I am feeling..... they never just ask something not related to MS..... MS has done that to me.

I used to be such an independent person.......now my DH does most things that I cannot do anymore........MS has done that to me.

MS has defined who I am now..... there is not a minute that goes by every single day of every single hour that MS doesn't remind me that it has me. How can I ever forget? Needles every other day, constant pain in my legs, a million pills

I know there are those of you who want to spin it so that we have to make the most of what we have, and please, while I respect your feelings, I don't feel that way -at least not yet.

My therapist says its a grieving thing..... I guess right now I am in the anger stage..... who knows how long it will take me to the acceptance stage...... I hope one day I will be able to scream from the top of the roof.... I HAVE MS BUT IT DOESN'T HAVE ME !

[jbell2435]

Tara,

I'm so sorry you are struggling with acceptance! I too was dx in 9/2011, and just 5 yrs older than you.

I agree with you, MS has us, not the other way around! I was just thinking that this morning as I gave my daily shot, wiping the blood away, feeling the sting, the itch on my arm from yesterday's shot not going away.

Honestly, I never thought I would say it, but I did this morning...I wish it would just end. What's the point, there is no cure and it's not going to get any better with the meds out there now?

Sorry, don't mean to be a Captain Bringdown, but lets be honest, it sucks to have this disease.

Maybe those that have had it for a long time accept it, but I'm not sure I'm there yet either. I thought I was, but now I'm rethinking that position.

[Justsayyes]

I can relate to being hit over the head with a diagnosis, I was 48, in the best shape, then whammo! The first year is hard, my worst. I thought about MS non-stop. Symptoms every day, compounding one after the other. Many friends avoided me, I had to invite them back into my life to show them it was OK to be with me.

I lied alot about how I felt because I got tired of having to make everyone else feel better about my MS.

I'm so sorry this has impacted your life in this way. This is definitely the place to vent, and thank you for allowing me to vent too on your thread! Not sure I'm over this "anger" part of the process either.....sigh......

[mjan]

{{{{ HUGS }}}}

I am so sorry for all you are struggling with and so familiar.
YESSS you need to grieve and getting angry is a healthy emotion.

What I am wondering is did you see an MS neuro? Have all the tests, labs, MRIs to rule out other diseases?

Maybe you did have all that done. Just wondering.
Do you have family/friend support? Hope so..

Come here anytime for extra support and information ok?
We understand..glad you have someone to talk to though.
And yes 47 is too young..but..remember it may not always feel like it does today. I used to blame all my signs/symptoms on stress and made it through many trials, being misdiagnosed and dismissed. It makes you tougher (and madder LOL)

Hope you stay close to us.. best you can~ Jan

[Nebbykoo]

My God, I can relate.

I was diagnosed at 30. I'm 43 now. And while I'm better off than many others with this, it has kicked my ***, and still does so everyday, without fail. One of the hardest things is meking others really understand what has happened, because it's a lot more than physical, or even mental; it steals your joy for life, your optimism, and that feels worse than having numb hands.
So all I can really say toy ou, alliesmommy, is hang in there for your kids and family. They can't feel your pain but they can still feel your love. MS can't take that.

[emass]

Changed My Opinion

You know, I used to feel like that too. Until this last January when at the age of 58 my dad was diagnosed with bulbar onset ALS. He has lost the ability to express himself and slurs so badly he can no longer do his job. He is on work disability and will be applying for SSDI, which with his diagnosis is a slam dunk. He can't drive either. I wasn't too bad at playing the "poor me" game, but every once in a while I felt it wasn't fair, but what I have is a drop in the bucket compared to my dad. I know some people aren't so lucky, but with RRMS and my meds, I have a fairly normal life span but my dad has 3 years. Now THAT isn't fair.

[mjan]

You know, I used to feel like that too. Until this last January when at the age of 58 my dad was diagnosed with bulbar onset ALS. He has lost the ability to express himself and slurs so badly he can no longer do his job. He is on work disability and will be applying for SSDI, which with his diagnosis is a slam dunk. He can't drive either. I wasn't too bad at playing the "poor me" game, but every once in a while I felt it wasn't fair, but what I have is a drop in the bucket compared to my dad. I know some people aren't so lucky, but with RRMS and my meds, I have a fairly normal life span but my dad has 3 years. Now THAT isn't fair.

So sorry to hear this about your dad. ALS is such a hard disease on everyone. He and you are in my thoughts..and prayers. Yes there is always someone who has it worse than me/us.

Hugs, Jan

[SNOOPY]

Hi alliesmommy,

I was not going to respond to this thread but the more I thought about it the more I felt the need to express my thoughts and opinions...for better or worse

I do understand the grieving process which takes place when diagnosed, all of us have dealt with an array of emotions...it's normal.

it was like an out of body experience.... but I'm only 47 ! This can't be happening.

I am sure many of us have said or thought the same thing. Unfortunately, many are saying things like "I am only a kid," "I'm only a teenager," "I'm only 20 something." This can't be happening to me, I'm too young to have MS.

Feel fortunate you didn't have to deal with the disease and it's ramifications at a much young age, when you have to start out your life with this disease.

I hope one day I will be able to scream from the top of the roof.... I HAVE MS BUT IT DOESN'T HAVE ME !

You can certainly think MS doesn't have you, if you so choose but the fact is...this disease is in control unless or until a cure is found and/or damage can be permanently repaired.

I used to Taebo 6 days a week for an hour each day( I was even on QVC and met Billy Blanks) now I can hardly walk on a good day and have gained 60 pounds because I can no longer do any kind of exercise............ MS has done that to me.

Have you tried Physical Therapy(PT)? Have you spoken to your neuro about appropriate exercises or stretching that might be beneficial for you and are appropriate for your current abilities?

Exercise is possible. Exercise may not be what you did before MS but even those in wheelchairs are able to exercise.

MS has defined who I am now

MS does not define who you are...you do. If you don't like who you are then look inside of yourself for those things that can help define you differently.

MS is a part of your life but it's not who you are as a person.

[gomer]

I do understand being hit like a brick wall by a MS dx can be very hard to swallow. Do realize there are worse things than MS. THIRTY years ago, in my 30s with 3 small children, the latest born 2 weeks before my surgery, this time of year I was getting over a much more serious shock. I had recently been given a 1 in 10 chance of surviving just 12 months due to the cancer Dx.

My oldest, my daughter was not even in school yet, and here I had little if any hope of ever being here to see her grow up, go to school or get married, that last one was the hardest.

That was 30 years ago. I have had diabetes longer than that, and MS complications even longer yet. Along the way I have always simply ADAPTED. I have had a full life, sometimes too full, compared to most.

Recently I spoke with my old family doctor from 30 years ago. He recently turned 72 and I am 66. Thirty years ago one bit of advice stuck with me all these decades. He told me as long as I was the one out of ten that survived, don't worry about the other 9. Now he has his own health problems and less active than I am, despite AFOs, canes, Rollator, scooter and part-time power chair user.

I hear the SAME stories from type-2 diabetics who have no clue what its like to be a type-1 diabetic, who also have the SAME stories. The grieving process is the same, the specifics vary, but the process does not.

I Have RRMS going back to my teens, Diabetes (5 insulin shots/day) and 3 heart valves with stenosis from Rheumatic fever, chronic kidney disease and a few extras for good measure. I am still kicking, I lived to give my daughter away in marriage, play with my grandson (just not as much as he would like) and have FUN, even if much of the time I using my power-chair.

Do I get DOWN......... yes.. I am only human after all, but I do NOT let diabetes or MS define ME, at least not yet!.

Gomer Sir Falls-a-lot

[Windwalker]

I hate that saying..."I have MS but MS does'nt have me."
I just do.

Nice vent there alliesmommy.