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I’ve Been Deluding Myself About My MS: It’s Worse Than I Thought

Appalled by How Far I Have Fallen

I have been appalled by how far I seem to have fallen in the past days. My gait, my strength, my stamina, my cognition, and my speech — they’ve all taken a serious hit in the past fortnight, and so has my self-esteem.

It’s why I've missed posting blogs for you all last week. Caryn has also had to take a whole new role in caretaking, as she has kept me from wandering around like a stoner looking for Screaming Yellow Zonkers.

We’ve laughed about it for lack of anything else to do, but that’s how I’ve felt: as if my mind and body have been totally stoned on drugs.

Maybe I Shouldn’t Be So Surprised

I have been appalled, but Caryn was surprised — not by how heavy my comedown has been, but that I see it as so new and so odd.

I’ve often said that I’m not the only one in the house living with my MS, and this experience bears that out. It seems that Caryn has seen this coming for some time now, and it’s not new to her.

There is the delusion.

I’ve been deluding myself that I’m better than I am. While this relapse has forced me to look at the way I walk and talk and get on with my days, I’m simply seeing what Caryn has been observing all along. Sure, it’s more pronounced and happening all at once this time, but she’s been watching me pretend that I’m more well than I am for a long time … and I can see that that makes her sad.

Wondering What I Can Do About It

We have a little joke that we like to say when one of us stumbles upon the obvious in life. “Oh, you’re soooooo pretty!” (said with a loving pat on the shoulder and a comforting frown. Think, “Petal, have you seen my reading glasses?” when they’re on the top of my head or something like that.) We laugh at ourselves a lot with that line.

Well, I’ve been “sooooooo pretty,” deluding myself that I’m getting on just fine. I’m not, and I’m wondering if there is anything I can do about it.

I happen to have an appointment with my MS team next week. It looks like I’m going to have a lot to talk with them about. I’m in a tough place right now, and I know that many of you can understand.

I have no idea where the blog topics will come from or where they’ll go in the coming days or weeks, but we’ll try to keep plodding away. I’ve put off my interview with the stem cell researchers until I can think straight, but we hope to get to it soon.

Missing My Delusion a Little

We’re going to keep on living our best lives, Caryn and I — MS or not. I guess I’m just at a place where I can no longer pretend that little is the matter. MS is the matter. And I have to wonder if, other than the shock of coming out of it, living in that delusion wasn’t a little bit better.

Wishing you and your family the best of health.

Cheers,
Trevis

My book,Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Illustration: Kirsty Pargeter/Getty Images

Last Updated:7/12/2016
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Date: 01.12.2018, 16:02 / Views: 41233