I've been thinking a lot lately about it. Who's ms harder on...me or my loved ones?
I'm so deep.
My personal opinion, and that's all this is, is that it's harder on them. Not really my kids, because they've only ever known me with ms. But my husband, my mother, my grandmother, and friends who "knew me when"? I believe it's more difficult for them.
This has come out recently in several comments my husband has made in the midst of unrelated conversations. For example, he expressed a feeling of urgency to get our "financial house" in order. I thought he was saying that, because he was tiring from working all the part-time jobs. Nope. Turns out, he'd like to have the flexibility of moving into a home sans stairs. What kind of challenge is that? A house without stairs? Come on! Carrying a laundry basket upstairs is about the only athletic event I've got left. Oh, lest I forget our recent purchase of a new refrigerator. He chose a french door style fridge that was twice the price of the traditional one I chose. Why? He didn't want me to have to lean over to pull out the gallons. I won that battle by countering with a fine "our financial house won't get in order if we take on debt" speech. Obviously, our "financial house" has spiral staircases. That oscillate. And he's recently become overly careful of me. His typical bear hugs are more like squirrel hugs. When I asked why he's treating me like glass, he reminds me that I recently mentioned I'd been in pain. Oh. Yeah. But I didn't mean...oh nevermind.
Telling my husband that neither of us are in control of what ms may do - is not of comfort to him.
Telling my husband that, if I get to the point where I can't make it up and down the stairs in our home, we could get one of those cool chair lift things - is not of comfort to him.
Telling my husband that I need his hugs, just don't kiss me on the top of my head on account of how it feels like sharp objects stabbing me in the scalp - is not of comfort to him.
So what does he do? He organizes the new refrigerator in an OCD-esque flavor. My kids took me aside the morning after he did this and said, in all seriousness...pointing at the carefully aligned array of items:
kids: "Mom? Dad said this refrigerator needs to stay just like this, okay?"
me: "I'm sorry, I thought you said, 'Dad said this refrigerator needs to stay just like this'."
me :::laughing, grabbing jelly out, spreading on toast, placing back on top shelf of main fridge:::
me: "what's the proper order?"
son: "jellies here, Daddy's jam there, condiments and such here, all the dressings go down there"
me: "oh reeeeeeeeally..."
son: "Mommy, please. Please don't do it."
me: "we both know I have to, buddy. We both know I have to..."
In place of my blackberry jelly? The giant bottle of mustard. The basset thought it was a great idea, too. If I go down, I'm takin' him with me. Proof's in the picture...bottom right;-)
MS, look what you've done to my refrigerator for the sake of all things good! A special place for "Daddy's jam"? (Refer to "jelly or jam" blog post of yestermonth) This is precisely why I don't often share how I'm feeling with him. I cannot adhere to such stringent refrigerator regulations.