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Originally Posted by ker0pi
I was diagnosed with relapsing remitting MS in December 2012. At that time I could walk with a cane. I could grocery shop and play with my son.
In the past three years I have slowly gone to crutches and now I use a four wheel Walker and I have to use fully voice activated software for the computer.
My neurologist now thinks that I'm actually secondary progressive, and that I was diagnosed already in the secondary progressive stage. I have not increased my lesion load at all since my initial diagnosis but my disabilities worsen daily.
My neurologist isn't willing to change my diagnosis because she wants me to still be able to try different medications.
Up until the last six months I have managed to stay optimistic, but lately I really feel like I can't do this. I don't know how much longer I'll be able to stay out of a wheelchair. My insurance won't pay for one because the bought me a mobility scooter. The mobility scooter is too cumbersome for me to use inside our home.
My whole family is in therapy at the moment to deal with what is happening to me. I think it was when I started to lose the use of my hands that I really started to feel what this disease is doing to me. I suffer from horrendous muscle spasms. None of the medication I take seems to really help.
I spend most days wishing this was a terminal disease. Then I would know the suffering would end. The thought that I could live like this, and in a worse condition for 30 years scares the hell out of me.
I used to be a long-distance runner and physical activity was how I coped with everything in my life. My therapist describes it is losing my entire sense of self. And she's right. I don't know who I am anymore. I don't know what defines me except my daily struggle with this disease and that is not who I want to be.
How do you cope? How do you reconcile who you once were with who you are today?
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Ah. I disagree with your neurologist on losing your "entire sense of self." It is more a reality of a new normal. You cannot change what is happening, you have to work on how you react to your particular set of challenges.
An antidepressant will help take the edge off your negative emotions. An antidepressant will not make things better, it just dulls the sadness and allows you to function despite the challenges.
I went from playing tennis to a wheelchair full time. It took about ten years to get to my current status. No new lesions, just the nerves doing their last gasp.
My nightly dreams sometimes trigger muscle memory so when I walk or run in my sleep and are amazed that I have movement, I treasure it.
The neurologist is right, do not update your original diagnosis. It will exclude you from trying different medications.
I have those annoying spasms. Do yours come with pain? I also take Baclofen. It did not work much, still does not always calm "the beast." Certain strains of cannabis help a little but most just elevate my mood.
See if your doctor can write a prescription for a wheelchair. It may or may not fly with insurance but try even when you think the answer is no. I have two wheelchairs, one for inside and one for going out. My wheelchair breaks apart into pieces to fit in the hatch of our Prius.
Google "The Spoon Theory" for your family. It is about Lupus but the sx's mirror MS and healthy relatives can relate to the article with more clarity.
I was proactive about this horrible disease. We bought a fancy bed that mimics a hospital bed in that is is motorized and will allow me to sit up if I become bedridden. I got a wheelchair long before it became an absolute necessity. I bought a bidet seat for my toilet. (One of my smart moves!)
And finally, I fake being ok. And I treat myself to an occasional ice cream.