What will I do today?

Something occurred to me last night. I spent all day doing stuff. Stuff needed to be done, so I just did it. Without much thinking. Do you know what that means? Yesterday I was not fatigued. Not being fatigued means I can just get up and do things and not have to wrestle with myself about it. You just get up and do it.

I have to remember this feeling, this reality, for the days that I AM fatigued. Because those days are much more common, and those days I tend to beat myself up about it. I feel guilty on those days for not folding the laundry or vacuuming the floors or cooking good meals. I feel guilty about sleeping too much. Because some ridiculous little voice inside me tells me I’m lazy and not good for much. But that’s just not true, is it? Because the fatigue really does drag me down. I guess I live there so often I forget what non-fatigue feels like. Is this what it’s like for “normal” people? Is this what it was like for me pre-MS? It’s a wonderful feeling. Not being dragged down. The ease of standing up and walking to the other room. Deciding to put away the clean dishes and then immediately getting up and doing it. That’s something I know we take for granted. I know I did, before fatigue entered my life. But no longer. Now on days fatigue decides to step aside for awhile, I look around with awe, I breathe a little easier, and I ask myself… “What will I do today?”

Advertisements

Father’s Day 2017

Today was Father’s Day, and I know my husband’s dream day is a day where he doesn’t have to do anything, a Day of Nothing if you will, so I tried to give him that today. The problem with that is that the lawn still needed to be mowed. Also, I had planned a dinner of steak and potatoes, and I’m not allowed to grill steak because it’s just too good to risk messing up, so he was stuck grilling as well. But he says he doesn’t mind that, so I guess that’s okay. I marinated the steak early in the day, baked the potatoes, and the rest was up to him. I’m really uncomfortable operating a grill, so I was totally fine with the compromise.

We did manage to prepare a nice brunch for him this morning, and that was a lot of fun. I made the bacon, Luke made the pancakes, and Natalie set the table. All while Dad rested in the recliner, watching the replay of last night’s Tigers game. It was a mostly relaxing day for him, and I know he got a good nap in before dinner, so I’ll call that successful enough.

I really wanted to give my husband the same spectacular treatment I feel like I was given on Mother’s Day, but I think that was just too much to live up to. Still I think between the Tigers’ game and a day of mostly nothing, I hope we came close. I really do, because he really works hard for our family. Seriously. He’s the glue, man. I can’t fathom where we would be without him. I hope he knows how much we appreciate him and all he does for our family.

Tigers’ Game!!

We went to a Tigers game last night! We love the Detroit Tigers around here. Baseball is really the only sport I am able to follow. Simple enough rules, and it moves slow enough that I can keep up. My boys love it too, of course, so it’s fun to share in the excitement of a good game. My daughter actually kind of hates baseball, and most other sports, because she says it’s boring. But despite her lack of enthusiasm, she tried her very hardest to have a good time. And as you can see from the photo, she managed to put on a smile.

The Tigers were down one run in the 9th inning so we all turned our hats on inside out and sported our rally caps. I didn’t get a picture of all of us but I assure you it was cute. (It didn’t work though, they didn’t manage to score again.)

We stopped for dinner on the way home, and enjoyed each other’s company thoroughly. It was good to do something like this as a family and I’m so looking forward to more adventures together this summer.

Grooming the garden


Okay, it’s not a garden. I just use that word for alliteration’s sake. The boys are away at a baseball game and the girls opted to stay home. When Natalie asked if she could go next door to help her friend pull weeds, it reminded me that I had been wanting to trim the front bushes. And since it’s evening, and the sun sets on the back of the house, I decided now was a good time. But halfway through she came back over to help me finish up, so I had to get a photo! Cuz that’s a good way to help make the memory stick.

Speaking of memory, and as a sidenote, I met with my neurologist earlier this week. She addressed my concerns and asked if I had anything else to discuss or ask about. I said no. Later that day, it occurred to me that there was one concern I forgot to mention: the fact that I occasionally have trouble with my short term memory. Ha! The irony there, l tell ya. Can’t take me anywhere, is what I say.

Anyhoo, hope y’all are enjoying the summer so far. Stay cool!

Hot Mess

85 degree summer heat.

Baseball tournament.

M.S.

Tingly hands debut.

Nerve pain.

Broken A/C freak out.

Sunburn won’t let me cool down.

Feeling helpless.

How does this not bother everyone else the way it does me?

What is wrong with me?

Oh yeah…. M.S.

Crying in the shower, snot running down the drain.

A good night’s sleep tried to help.

Literally dragged my foot to the bathroom the next morning (I did say “tried”).

I sat and waited in the physical therapy office for a half hour before checking in with the receptionist to see what the hold-up was. She was quite obviously unaware of the time of day, and had forgotten to let the therapist know I had arrived. It goes on from there, my bad luck, but I’m tired of hashing it out, those dumb details, so I’ll attempt brevity. I missed my ride, they tried to get me a new one, but I took a ride from a friend instead. Because I didn’t want to risk unleashing my emotions on a complete stranger. I came really close to doing that already at the therapist’s office, after discovering I had missed my originally scheduled ride. My husband reassured me that this was just a minor bump in the road, which I should have already known of course, but he knew I needed to hear it (He still amazes me, coming up with the right thing to say).

This was not my typical Monday. I don’t usually have to be anywhere, or talk to anyone but my family. So it was hard to do in the wake of a rough-on-me weekend. I just didn’t have the tools necessary to cope with minor hiccups like delayed appointments and missed rides. I spouted my frustration on Facebook and received lots of encouragement in return, but I felt a little shameful doing it. Because I like to be the positive one. I guess today I just decided it wasn’t worth the effort. Because it was going to take a lot of effort.

But those positive words helped, and the ride from a friend, and then a good nap in my own bed (with working air conditioning!). The kids were with grandpa for most of the day so my only interruption was the dog barking at who knows what. It was nice. And then I grabbed a beer, turned on some Led Zeppelin, and started chopping vegetables for dinner. I managed to relax. Truly relax.

I have more doctors to see this week and then I start some physical therapy next week. I’d bore you with the physical therapy details if I could remember them. So you’re in luck, cuz I have a terrible memory.

Peace out, readers. I hope you take some time this week to relax. Really, truly relax. It can only do you good.

 

Hide and seek with Piper

Our dog loves loves loves to play fetch. I’m pretty sure it’s all she ever thinks about. Sometimes when I go back inside the house she anxiously awaits my return. Only I think she doesn’t want me to know that’s what she’s doing, because she will hide, ever so cleverly, behind the grill. She just sits there with the ball, Peking around the corner. And of course she thinks I can’t see her, with the screen door blocking my view, you know?

Birthday Boy

The night before my son turned 10, he asked me to take his picture of his last day as a 9 year old, and put it on Facebook. Turns out, he had done the same thing the year before when he was turning 9. I had forgotten all about it, but maybe he hadn’t. Or maybe it’s just a thing with him, that he really enjoys the anticipation of special days like birthdays and holidays. He’s going to be one of those people who grow up to celebrate their birthday all month, simply because they are adults and they CAN. I love birthdays, and I have friends who love birthdays and we all agree that it’s cool to make it as big or as little a thing as you want. Because LIFE, people, we’re celebrating life.

So, speaking of celebration… on the exact day of Luke’s 10th birthday (the day after the above photo was taken) we all went to FunTyme to ride go-karts. Because we had so much fun on Mother’s Day, we figured, why not? Only this time Natalie rode with Dad, so Mom got to fly solo. They made sure I knew where the traffic light was located this time, as well as which position each color was so I would be sure to come in when the light turned red.

Dad beat the pants off all of us, and I was in 2nd place for several laps, until I hit the bump. There’s a decent bump coming over the bridge that I had learned to brace myself for each time. Only I was a second too late on this particular lap and I got jostled pretty good. Jostled so much that my right cochlear earpiece fell off. Well, flew off is probably more accurate. Oh, I was internally freaking, let me assure you. I calmly pulled the kart to the side and stopped, while flagging the operator to come over and help me find the earpiece. It was nowhere near the kart and I was starting to worry that I or someone else had run over it. The second operator came running and helped search┬áthe track a little further from where we were standing. He found it right away and held it up with a big smile. At least I imagine he was smiling… I couldn’t see that far, of course. Oh man, I wanted to hug that kid. I realize that the cochlear implant company can easily replace the earpiece, but I have no idea if my warranty covers it, and I didn’t want to have to make that call (with only the left year operational, of course).

Me: Hi, my right earpiece isn’t working.

AB: Can you tell me what’s going on with it?

Me: Well, it won’t stay on my ear anymore, because it’s… uh… sort of smashed to smithereens.

AB: Uh…

The earpiece showed no signs of damage and it worked fine, right off the bat. I was extremely relieved and grateful and we all had a good laugh at my expense. I’m still loving this go-kart thing though, and I think now I’ve got the two most valuable lessons under my belt: 1) know where the lights are and 2) don’t wear your earpieces while driving. The cars are so loud, hearing isn’t so useful to me then anyway.

But back to the birthday celebrations. After the racing, we let Luke hit some balls in the batting cages while Natalie practiced her cartwheels in the grass nearby. After that we all went to Chipotle for some yummy tacos and burritos. None of us had eaten there before, and we were quite pleased. Luke’s favorite restaurant has always been Taco Bell, but someone had told him that Chipotle was like Taco Bell, only better, so of course he had to try it.

Our last stop of the night was for ice cream. Because my son can eat ice cream all day long, and he will if you let him. It’s no coincidence that that’s all I craved when I was pregnant with him. TEN whole years ago. Can’t believe it, my baby boy is ten. Happy birthday, Luke.