Fighting Multiple Sclerosis...or whatever you call this

For almost a year, I have been dealing with on-again/off-again neurological symptoms that still have no definitive explanation. I've been to 6 doctors and each of them come to the same "maybe it's MS but I'm not sure" conclusion. They refer me to someone else and the cycle repeats.

In the meantime, I've had one of the most exhausting years of my life. I've been through some extremely tough things, but this has been so unrelenting. So personal, and so draining. It has forced me to think about myself more than I'd like to. I'm a mom and I have small children to take care of. My main focus should not be on myself.

The pain can be intense. So intense and so unending. I never understood why people used drugs or alcohol, but after months of dealing with non-stop pain, I finally got it. And it devastated me to feel that way. It's goes against my moral fiber to think that way. Yet I did.

I don't take medication often. I try to live "organically" if you will. But I took every over-the-counter pain medicine I could find. None of them helped. I took prednisone for awhile. I think it helped with some of the numbness and tingling, but it made it impossible for me to sleep. And that aggravated everything else. Between the lack of sleep and the pain, I had lost all patience for everything. It made taking care of my children almost impossible.

On the one hand, I feel blessed that this didn't happen when my children were babies or during some of the other times in my life when I had to be capable and aware. But at the same time, I am angry that it's happening right now. I'm angry that it's happening at all. My kids still need me. They are at a point now where they will remember things. Will they forget the 4+ years I spent loving them and caring for their every need and only remember my lack of patience, how I was too tired to do anything, how my body always hurt, and how my mind was always occupied with something else.

Half the time, I am just too dizzy or foggy to think. And the other half, I'm focused on how I'm going to fight this disease. I'm going to doctor's appointments, fighting with our insurance company, waiting for lab results, reading about treatment options, and trying things at home to improve my symptoms. And a lot of the time, I'm making a mental list of all the things I want to do now just in case my legs or arms stop functioning all together.

I worry about giving myself the injections to stop my immune system. I worry about those side effects. And I worry about the costs. Our insurance only pays a percentage of our medical bills and I know those medicines cost thousands of dollars a year. Imagine the stress of paying those bills, or a percentage of them. Increased stress is not good for MS, or any other condition.

I'm angry about my inability to function "normally". I'm angry about my constant focus on myself. It's hard not to think about it when you're body parts randomly lose all feeling. And this happens often.

I dug my rollerblades out the other day. I tried so hard to teach my children to rollerskate over the winter so we'd be ready this spring. I guess they are just too young. But can I really wait to start rollerblading again? It's something I used to love to do. It was exercise that never felt like work. When I was younger I used to have dreams nightmares that my legs suddenly stopped working. I had these dreams often and they freaked me out. It's my worst fear and now it looks so probable. So I want to run (even though I really hate it) while I still can. I want to rollerblade again. I want to ride bike and walk and all those normal things...always.

And there it is...the focus on myself again. When I add that in to the normal mommy-guilt and worries, it's just unbearable. I want to be functional. I want to be able to think and be present again someday. I want to be there for my children, physically and mentally as they grow up. So far, it's been harder than I could imagine.

But I'm fighting back. Well, sort of. I'm exercising and eating healthier than I ever have before. I am still deciding whether I go to the next neurology consult or not. I have a feeling the answer will be the same. I've already had every blood test, neurological test, MRI, ultrasound, x-ray, you name it. I don't want to take any of the medications for multiple sclerosis, and it scares me that someday I might have to.

I'm dropping things off of my to-do list that are not priorities and making time when I can forget everything else and just focus on my kids. I've started teaching them to read and have made more scheduled playtimes with them. I've said no to people that want to eat into my family time. I've been working hard to repriortize my life. I may not have the patience or focus I used to have and my mind is defintitely a lot more cloudy, but I can cut some things out and try to focus more on the things that matter. I'm trying not to let MS be the only thing I think about or the only thing I talk about.


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Thank you for your comments! I appreciate all your tips, advice, and well wishes!


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