I was talking to a friend, an ex-friend as you shall soon see, about me and my MS. He said I shouldn’t call it my MS. “If you do so, it will own you.” He also said I shouldn’t refer to it at all by name, and that I should meditate to get over it.

And now you know why he is an ex-friend. To make a long story short, I told him that he was not a doctor, not even a medical practitioner of any kind. I told him that he was full of shit. And I told him that he didn’t have a fucking clue about my MS.

We haven’t spoken since, and I don’t miss him at all. But that’s not what this post is about. What I want to do here is tell you why I call it my MS. But first let me tell you my thoughts on meditation, and why I don’t meditate.

I have no problem with meditation or with folks who meditate. If you meditate, I hope it helps you find some inner peace. It’s not going to cure your MS or prevent your exacerbations (fancy word for MS hits or symptoms), but it might help you relax, chill out or just feel calmer. Like I said, I have no problem with it. I just can’t do it.

I am a writer and copy editor. I edited a book on meditation. While I was editing the book, I thought I should try meditation. I meditated for ten minutes a day for about a month. And I hated every minute of it. It’s just not my thing. It made me feel uptight, not relaxed or calm. I have found my own way to chill out. Walking. I go for long daily walks with my dog. I zone out while walking him. I disappear to I don’t know where, nor do I care where, while walking him. So it’s fair to say that I find my dog walks very meditative. But I can’t and don’t want to meditate in the traditional sense of the word. And even if I could, doing so sure as hell is not going to rid me of my MS.

So, more importantly, why my MS?

If you have MS, you know that there are three main types of the disease. Relapsing-remitting MS, where the exacerbations come and go–sometimes lasting for weeks, sometimes for months, sometimes for a year or more. That’s what I had for fifteen years. Then there is secondary-progressive MS, in which there is a progressive worsening of neurologic functions over time. Some hits come and never go, and they are compounded by hits that come and go. It’s what I now have.

Finally, there is primary-progressive MS, characterized by worsening neurologic functions (accumulation of disability) from the onset of symptoms, without relapses or remissions. PPMS puts people in wheelchairs or causes them to become bed ridden.

As for me, I walk with a cane.

If there are only three types of MS, then why do I have my MS? That’s what those of you who don’t have the disease may be asking.

The answer is as simple as it is neurologically complex. Within each type of MS there are a myriad of symptoms. When I say myriad, I mean numerous, almost countless. Many are physical–and not just one type of physical. While many folks with MS have similar physical disabilities, they all have different ones too. I don’t want to enumerate them all here. Trust me, there are countless different physical symptoms, none of them pleasant.

Some of the symptoms are cerebral, in that they literally impact a person’s ability to think, remember, speak their thoughts, and/or act. And some symptoms are emotional. Some people have symptoms from all three categories, some from two, and some from one. And we all have different symptoms. Hence my MS.

So what symptoms have I had, and what am I dealing with now?

Since you asked, I will tell you… Initially, I had bizarre tingles spread all over my body. It was as if my entire body was falling asleep. I had daily hits of fatigue. Not tired, but pass out for an hour or more fatigue, and come to as exhausted as when I passed out. I have had several bouts of optic neuritis, in which strange things have happened to my vision. I had a hit to the taste buds–made everything, even water, taste like crap. I’ve had these and various aches and pains. The tingles and bouts of fatigue lasted a couple of years, and have come and gone since they first disappeared. Mostly gone, thanks goodness. Other hits as well came and went over several months. In between various hits, I was fine overall. But when the exacerbations hit…

Now I have a chronic headache. Notice I said headache, not headaches. I’ve had one headache for about six years. On a pain scale of 1 to 10, it’s been as high as a 20 (no shit) and has settled in at a 5, that spikes up to 8 or so now and then, particularly in the evenings, often in the mornings. Oh, and sometimes mid day too. My balance is off (hence the cane), legs are weakening and my knees are wobbly (no other way to put it). Plus I get pains that come and go and move around: shoulders, lower back, one hip then the other.

Not fun. But it is what it is and there is nothing that I can do about it, other than eat chocolate! Seriously, I find chocolate distracts me for a few seconds.

In short, MS is different for all who have it, and I know a lot of people who have it. Hence, what I have is my MS. Not the MS of others. Yes, there may be similarities, but there are one helluva lot of differences too.

As for my ex-friend, I wish him well. But I sure as hell don’t wish to talk to him, or people like him who think they have a cure for anything that anybody has. I suspect in a way it’s because they don’t have a cure for the ignorance and arrogance that they have.

Paul Lima is the author of Everything You Want To Know About MS, and 20+ other books, including two novels. Read more about his books at paullima.com/books.

4 thoughts on “Me and MY MS…

  1. I concur with your sentiments completely, and would have the same reaction to your once-friend’s comments. And as for meditation………it is completely foreign and unnatural for me.

    Continue to enjoy reading your blogs, though they sadden me.

    Loved, loved Season 1 of Staged and look forward to seeing Season 2. So clever.

    Anita

    Like

  2. Loved your blog. Describes MS, and ignorant people. Yes, pain clinic had me try meditation. Does not cure MS. The Pain is still there. Does it decrease? Or all in your mind?
    A GP that never saw me put a new diagnosis on top of everything. This is for a future blog, as I have blood test and endocrinologist, Neurologist, GI Dr, and cancer Dr visits to show and talk with.
    joey
    Everchangingms.blogspot.com

    Like

  3. Finally, there is primary-progressive MS, characterized by worsening neurologic functions (accumulation of disability) from the onset of symptoms, without relapses or remissions. PPMS puts people in wheelchairs or causes them to become bed ridden.

    This is me. This is my MS. You write pieces I want to write but cannot find the energy or motivation for. Thank you!

    Like

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