"I have MS but it doesn't have me…"

What a load of malarkey.
Every time I hear this or read some cheery news about how wonderful life with MS is, I want to scream. Really loudly.
Except that I can't because I'd like to accomplish something tomorrow and extremes of emotion exhaust my fried nerves.
It's not that I'm not grateful. Honestly. If I had to have a chronic debilitating disease, MS is at least amusing. It changes and wobbles and is completely unpredictable. It makes every morning an exciting trip of "can I feel this" and "can I stand up without falling over?" and "will I need to nap half the day today?" It's exciting.
But it also sucks, absolutely.
I am tired of trying to live normally only to be hit upside the head with a flare-up or a sudden inability to do math or fatigue so intense I can't get myself out to buy milk, let alone do anything else.
I used to be a can-do type of gal, taking things on and throwing them about, accomplishing three things with my right hand while juggling another two with my left. I could multi-task. I could work with music on in the background
Now I find myself typing okay with one hand while the other lolls about and goes on strike or types at a different speed. My brain packs up and wanders off at odd moments and words go walkabout.
Most of the time I'm fine.
But I can't predict it, see. When my brain goes out on me, it's a sudden thing. I become exhausted in a moment, crash and burn.
And so I find myself limiting my activities, withdrawing from things, gradually detaching myself from positions of responsibility, backing off, choosing things that can be cancelled in a heartbeat.
So, I have MS, and yes, it does have me. By the throat.

Fighting the fatigue monster

Feeling angry and generally despairing. 

Went to an event this weekend and had to return early thanks to MS exhaustion. Beginning to realize that as time goes on and the fatigue and confusion hasn't lifted, I am likely left with a bit or permanent cog fog and a lot less ability to do things...

It is frustrating and surely one of those losses I'll have to get used to over time. As with the other losses in MS, it just becomes accepting a new normal, but along with that comes the loss of dreams for the future...dreams of travel, publication, probably even a partner.

It's interesting looking down the skinny end of the telescope as my world narrows. Things close in. Friends become so important, especially true ones. Joy becomes more valued, a hearty laugh worth everything.

I've chosen wisely. I made a move to paradise, Nova Scotia. I can be outside in a wildly beautiful spot in moments. I like the people here, and I have made good friends. Health care is great, the climate is perfect, and whenever I need the sea, it's steps away. Music is everywhere, the library is fantastically accommodating, fresh apples arrive every fall...

But I'm still grieving today.

I'll have adjusted by tomorrow. Nothing that a good rest and some PBS mysteries can't solve...and a few fresh fall Macs from our last run down the valley.

Running with MS

Just read a series of transcripts on the national MS Society Website, with Dr. Kalb and Clay Walker, the C&W singer, who has MS, discussing adapting to MS . Not earth shattering, but the following quote interested me - it speaks to how I try to deal with this disease, and why I wince at all the people who say "I have MS, it doesn't have me." How they can say this when MS can pick them up in its gargantuan fingers and shake them about whenever it wants, I dunno. For me, I know that MS has me, and has changed my life forever in ways nice and not so nice.

Here's the quote from Richard Cohen, a person with secondary-progressive MS. He says, “But with any progressive disease like MS, the moment is going to come where you feel overtaken by it. It was time to stop running from it and start
running with it. I just reached a point where I had to admit it was a part of me and part of who I am."

Yep. That's the way I feel. I feel as if I and MS are a somewhat unwilling team pulling this body of mine about. Sometimes I misbehave, sometimes the MS does. We are both interested in going forward, but we might differ about the direction.
When we are running together, I feel almost normal. But I am always aware that I depend on the cooperation of my MS to continue. As it depends on my cooperation - eating well, resting enough, looking after myself, exercising....

Unless my MS is feeling mischievous that day. Then it doesn't matter what I do - my MS will play about and bring me interesting sensations, experiences, challenges.
Keeps it interesting at any rate. And fortunately we share a sense of humour.