It's Not That Bad

I've had MS since 1978, diagnosed in 1981, and I have been both RRMS and SPMS, and I'm now what a neurologist called "Burned out MS," and let me clarify that. I'm not burned out by having MS, MS appears to be burned out with causing me new symptoms for the present. I have had two exacerbations in the last twelve years. One landed me with bipolar disorder, which is very stable and does not require any special treatment. The other hit me just after the 2020 election and appeared not to have landed me with any new symptoms, thanks. I was just sick exhausted and confused for three weeks. If you're familiar with sensory overload -- this felt like cognitive overload.

Stable and mildly disabled

In other words, I am stable as hell and mildly disabled. I use a cane when I leave the house because I walk like a drunken crab, and hearing the tiktiktik of the cane keeps me going straight MOST of the time. I also live with bladder/bowel problems, pain, insomnia, spasticity some cognitive deficits that primarily affect my ability to focus on tasks. I manage my MS with intensive physical exercise, yoga and meditation, and have been on various iterations of Copaxone for twenty years. I have LOTS of scars on my tum from the constant injections, but I've only had one reaction to an injection, which was indistinguishable from a hot flash: fifteen minutes of flushing, racing heartbeat and intense feeling of agitation. And then, poof, all done. I also do not mind shooting up and have become very tolerant of any kind of needle activity when it comes to my MS.

Communication is key

So my course of MS is not disabling, and while it isn't nothing, it's not that bad, especially compared with a lot of other people. I'm able to do a part time job from home, and before the pandemic, I was even able to travel with a LOT of help and support from my excellent husband. And I do mean excellent! He's a treat! But that's another post. And because I'm doing quite well with managing the disease and the others I live with, I talk about having MS fairly openly. Not every time I converse with people, but if they ask how I'm doing, I let them know. as in, "Feeling a bit shaky today, but I'll manage." When I work out with my trainer, I make sure to tell him exactly how I'm feeling, so we can tailor the workout to address the problems I'm having.

People not believing in my MS

BUT, and here's the kicker. People have been known to write my MS off as negligible to nonexistent, and that infuriates me. We were friends with a surgeon and her husband, and she was reported to have said, not to me but to an acquaintance, that she didn't think I even had MS. And when I told my revered chiropractor that I had made a list of all the symptoms I had currently or had experienced in the past, he told me about the people he had met when he was on the neurology rotation of his medical education, and talked about how hard it was to see people who were so disabled that they were bedridden.

It takes a team sometimes

I lived for twenty two years with no medication available other than addressing specific symptoms. My urologist treated my bladder problems appropriately and well. My neuro-ophthalmologist was tremendously helpful. My principal care physician was a rock, particularly when it came to addressing my overall health and especially addressing the IBS-C that has been an inescapable part of my life for the forty years I've lived with MS. But until I went on a Disease Modifying Therapy in 2000, Multiple Sclerosis proceeded unchecked. I was much more disabled in 2000 than I am now, twenty years later.

Invisible pain

Just because my MS is not readily visible, don't assume that I don't have it, that I don't manage it every day, that where I am now is partly because as a middle class European American woman in comfortable circumstances, my experience has been privileged. I know other people have it worse, but my bearable experience is valid as well.

We're in this together

All of us who live with this disease have individual cases that do not exactly resemble anyone else's MS. But we all of us participate in each other's cases. I don't have your exact set of symptoms, but I know what you're going through, because at some point in my long history with MS, I have been close to where you are. I currently am a moderator on the Facebook page of this site. I can relate to your experience. When you are cut, I can bleed a little. When you stumble and fall, my knee can ache too. Each of us is a part of all we have met, to paraphrase Walt Whitman. To write off my experience with MS is to slight all of us. This disease is often spoken of as invisible, but each of us has a special kind of MSvision. I see you. When I'm here, I know you see me. And we are not alone.

So that's part of my story. I'm glad I have a forum to share it, because writing about it, and reading your stories helps me understand myself and my place in the world. Thank you all and stay safe and well.

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