Multiple Sclerosis (MS) Support Group
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tarabunnyears
I feel very betrayed.
I see ads for MS medications and the person is skiing or rock climbing and boasting of how they are fighting MS and winning.
Sometimes it is a drug company trying to get you to use their medication and other times an article meant to inspire. But it never inspires me, instead it makes me feel weak and lesser than, because no matter how hard I try, I will never be able to do those things.
I was extremely excited about yesterday, I was taking the girls snowtubing at a local ski place. This, I can handle. No skiing, no walking up hill to tube down as they had a conveyer belt to take you to the top of the hill oh yes, this was going to be a perfect day.
Well, would have been a perfect day if my body had not betrayed me.
I had not even made it down the hill yet, I was just standing in line when I felt it start to happen. The legs they started turning to jell-o. No, this cant happen, I promised my girls a wonderful time. As our turn came to go up the conveyor belt I stepped on and then it got worse. They started buckling, I started to panic. No, they cant fail me. Please God, dont let this happen.
Luckily Allison was behind me so she could not see the tear stream down my face. Why does my body have to betray me like this?
I made it to the top of the hill. The rest I was not worried about. Laying on a tube I can do. And yes it was fun.
After that, me and Hannah found a quiet spot and I sat down in the snow. Let her sit in a tube and pushed her back and forth as I sat there.
I was trying hard not to give into emotions. I just wanted a fun day. A day to relax and destress. A day to give something to my girls. I feel like they miss out on so much because of me.
The rest of the day was a hazy, blur. It took everything I had to just get from point A to point B.
We left, and luckily I was not driving. We stopped to eat and I literally could not eat. I simply did not have the energy.
I came home, crawled up the stairs and climbed into bed. A few hours later, decided to shower, a decision I regretted 10 seconds into the shower, as I started stumbling and falling.
See, I was prepared for muscle spasms trying to ruin the day and pain. It is not easy, but I can fight through pain, but when your legs dont work what can you do?
And the scary part is, you never know how bad it will get. And I just went off my Copaxone, thanks to a &@%$# doctor who refuses to treat me.
I just feel so betrayed by my own body. I try, I do. It just wont let me.
BTW, after the shower, I stumbled into bed. Head pounding, muscles hurting, legs weak, hands tingling, feeling like a failure. I handed Allison the ice pack and asked her to fill it up for me for my headache. She went downstairs, filled it, and gave it to Hannah to bring up to me.
As I layed in bed, crying, I hear her little feet running up the stairs, she hits the top of the stairs and starts calling out, Momma, momma, here you go momma. And she runs into my room, hands me my ice pack, gives me a kiss and says, I love you. She turns and leaves and as she closes my door says, Bye bye momma.
Yes, my body may hate me, but the love of my girls makes me the luckiest person alive
I see ads for MS medications and the person is skiing or rock climbing and boasting of how they are fighting MS and winning.
Sometimes it is a drug company trying to get you to use their medication and other times an article meant to inspire. But it never inspires me, instead it makes me feel weak and lesser than, because no matter how hard I try, I will never be able to do those things.
I was extremely excited about yesterday, I was taking the girls snowtubing at a local ski place. This, I can handle. No skiing, no walking up hill to tube down as they had a conveyer belt to take you to the top of the hill oh yes, this was going to be a perfect day.
Well, would have been a perfect day if my body had not betrayed me.
I had not even made it down the hill yet, I was just standing in line when I felt it start to happen. The legs they started turning to jell-o. No, this cant happen, I promised my girls a wonderful time. As our turn came to go up the conveyor belt I stepped on and then it got worse. They started buckling, I started to panic. No, they cant fail me. Please God, dont let this happen.
Luckily Allison was behind me so she could not see the tear stream down my face. Why does my body have to betray me like this?
I made it to the top of the hill. The rest I was not worried about. Laying on a tube I can do. And yes it was fun.
After that, me and Hannah found a quiet spot and I sat down in the snow. Let her sit in a tube and pushed her back and forth as I sat there.
I was trying hard not to give into emotions. I just wanted a fun day. A day to relax and destress. A day to give something to my girls. I feel like they miss out on so much because of me.
The rest of the day was a hazy, blur. It took everything I had to just get from point A to point B.
We left, and luckily I was not driving. We stopped to eat and I literally could not eat. I simply did not have the energy.
I came home, crawled up the stairs and climbed into bed. A few hours later, decided to shower, a decision I regretted 10 seconds into the shower, as I started stumbling and falling.
See, I was prepared for muscle spasms trying to ruin the day and pain. It is not easy, but I can fight through pain, but when your legs dont work what can you do?
And the scary part is, you never know how bad it will get. And I just went off my Copaxone, thanks to a &@%$# doctor who refuses to treat me.
I just feel so betrayed by my own body. I try, I do. It just wont let me.
BTW, after the shower, I stumbled into bed. Head pounding, muscles hurting, legs weak, hands tingling, feeling like a failure. I handed Allison the ice pack and asked her to fill it up for me for my headache. She went downstairs, filled it, and gave it to Hannah to bring up to me.
As I layed in bed, crying, I hear her little feet running up the stairs, she hits the top of the stairs and starts calling out, Momma, momma, here you go momma. And she runs into my room, hands me my ice pack, gives me a kiss and says, I love you. She turns and leaves and as she closes my door says, Bye bye momma.
Yes, my body may hate me, but the love of my girls makes me the luckiest person alive
Tara - why won't your Dr. treat you? If he/ she won't, find one that will!
My Neuro started me on Copaxone when I was first diagnosed, and she called it a "starter drug." It didn't do anything for me at all!!! You should definitely try another DMT as well as other daily medications to help with your symptoms. I am like a drug store here! Every day I make a nice, colorful salad of pills to keep me up and moving! Better living by chemistry, I always say! :o)
Hang in there!
Your story was very moving. God Speed to you our dear friend.
Oh and yeah, the ads are schmutzie. I don't think the advertising company that came up with the ads thought of using actual MS patients. Hmmm, person lying on couch most of day watching tv and sleeping? (My attempt to reserve energy stores for when I have to work.)
I am trying to find a doctor now. Limited ones where i am, so I am driving 4 hours to get one. I will get back on track, one way or the other.
http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/11241434-omg-i-am-so-scared
"WHY"
Why does my body hate itself.
I used to run and be very active. Now I cant walk in Walmart with out spend the rest of the day on the couch. I try but my body says "NO". I feel like crying every day now. What scares now is my Neuro wants me to come as soon as possible.
WHY?...( hopefully he does want another spinal tap.)
He put in the hospital in May to treat me with a steroid and I think it is not working like he had hoped. But what else can he do. I have already been on two different injection.. First Betaseron and now Copaxone. I would if it is not working.
I hope you have better days and find you a neuro soon and get back on your meds.
Thanks for your story.
Becca