"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.

On the perils of accepting charity

Job accepting charityWilliam Blake

I am in a frumious mood. My own fault. I went to a charity MS event today. Not a fundraiser - a "social" event. One of the Anglican churches here has been holding lunches for people with MS for the past 40 years - an astonishing and kind commitment but ever so slightly weird. 

Why? Because they don't speak to any of the attendees and in fact treat us all as if we are mentally feeble. I had one man practically walk with me to the washroom to ensure I could understand the Men and Women signs appropriately. Argh. 

A church pianist sort played hearty Christmas music on the piano to add context but she played too loudly for anyone to speak with each other, especially MSers with weak voices, sort of like you'd do at a senior's luncheon where everyone is senile or very hard of hearing and sits quietly and drools through the concert. She did a good job but had a different songbook than any of us so we always ended the carols in different places. 

They kindly made food suitable for people without teeth and brought around broken up bits of fruitcake that were passed to us in crumbly small amounts. And they poured us 1/2 cups of coffee so we wouldn't run the risk of spilling it or burning ourselves.

Santa came, and with him a man dressed as an elf, who gave a 15 minute long speech, crying all the way through, about how he loved wearing the elf suit for Christmas Daddies and etc and how "all your happy faces" made it worthwhile. The happy faces got rather stiff during his emotional session, which I guess he does whenever he wears "the suit". He does make a good elf, if a somewhat bipolar one.

We'd taken a ride from friends so we were hopelessly trapped there for the entire event.

There WAS a wonderful man with a fantastic voice who ensured everyone sang Christmas Carols, so that was fun. I suspect he is the parishioner who pushes this thing - they said at the beginning that the usual people didn't want to host it so the men's club did. 

And so all the men stood together over in the corner staring at us while the women toiled in the kitchen, as usual with church things...And everybody brought $5 gifts to share. I was hoping for chocolate but instead got a shiny necklace and two hand towels in pink that said "Love always persists". With bunnies and carrots embroidered on them (not by hand).

All in all it made me CRINGE with horror at the thought of being in a senior's home where I would be pushed out to one of these festive events in a wheelchair and forced to endure and smile through all of this SHIT every few days until Christmas. I swear to god I am taking myself out before that happens, or I'll have to check in with a weapon. Or a few.

God, I pity the poor. It occurred to me that this is what usually happens at charity dinners, where all the good folk, hardworking and with their hearts firmly in the right place, cook food and serve it while watching the poor/old/feeble/sick and hoping they are appropriately grateful. Egad. And for the first time I saw the hell that ongoing disability could be - endlessly going to these things for a "day out" until I perish in the attempt to gulp back another shortbread cookie made with rancid butter. I'd rather get a cash gift and spend it on liquor and sin, with no one watching to see if I choked.

I really don't think I have the intestinal fortitude to be a charity case. How DO they do it?

Exhausted from trying to be nice and failing miserably. 

Rain, rain, go away...

Well, to be fair, the sun that's been hiding for the last several days is actually making an appearance today. I love feeling it on my skin as I curl by the windows.

No, it's the internal rain that's getting to me.

Battling depression isn't pretty. When part of it is due to organic brain disease, that's even more fun. Sometimes I don't even know who I am any more.

I'm disorganized, I overspend, I do silly things with my short term life choices. Sometimes it's a bit scary as I try to negotiate around the me and me-but-messed-up parts in my head.

I probably should have a keeper, someone to be accountable to. But in my twisted mind, I don't want anyone to play that role.

I feel a bit like a badly behaved horse, trying to fight her way out of a stall, but resisting the halter that would lead me there.

I wish they'd get a grip on what was going on in our heads, we MSers. Some of us have no cognitive or emotional problems; some of us hide them and suffer in silence; some of us display them for all to see.

Last week I bottomed out and I still feel like I'm in an unreal state, not really here, not really present. It's bizarre, like I'm recovering from a bad cold or something. My brain is crowded around with clouds and mist.

Where is that sun?

My dream wheels, phase two

Time and MS wait for no woman. After my clinic visit yesterday I realized that hey - yep - got this thing. Gotta learn to live with it as well as I can. Nope, it's not going to go away.
So what do I do? Look at cool toys. When I was first diagnosed I got all excited about the thought of a walk-in tub, like those ones on TV. Now I'm thrilling to the thought of a big wheeled Rollator that will allow me to walk fast for long distances and rest when I need to. Cool, huh?
And then I still have a scooter to look forward to.
In a way, hearing and seeing my right foot's lack of movement was a bit - I dunno - affirming. The thing with MS is you look fine to people - but you know you aren't. Everyone tells you to buck up, think positive, take supplements, fight. But your brain doesn't always listen to those cheerful encouragements and things do change. And they don't change back. And in a way, not fighting this is thinking positive. It is accepting the real limitations MS places on you and trying to make the best life you can, nevertheless.
There's no point in shaking your fist at the rain. But you CAN get a cool, mega trendy umbrella to make the sky bright.
Rolling onward as long as the wheels will let me...