🎶Take Me Out To The Ball Game🎶

It won’t take you long to figure out that we are a family that loves going to sporting events. Whether it’s NFL, NBA, Major League Lacrosse, Minor League Baseball, or just our school’s teams if we’re not watching from the couch, you can find us in the stands cheering loudly for the home team!

A few years ago, I thought going to a game with young kids was difficult. The diaper bag has to be big enough to hold everything, but the stadium only allows clear bags so you frantically search the house for that tote bag you got from Bath & Body Works two summers ago because it’s the only clear tote you have. Don’t forget the snacks for the toddler - you know she’ll be hungry 5 minutes after you sit down, but make sure it doesn’t look like anything an adult would want to snack on because those aren’t allowed. Oh, you actually wanted to watch the game? Hahahahaha! You’ll be running up & down the steps & making multiple laps around the concourse because the kids have learned that if they say they have to go potty, they don’t have to sit still in the plastic seat anymore. I am so very, very, very glad that we were well past that stage by the time my MS symptoms decided to appear. To those of you who are dealing with both scenarios at once, know that you are a superhero & I am absolutely amazed by you!!!

Nowadays attending games has lead to a new world of difficulties I had never considered before. Since MS is unpredictable, I’m never sure if I will be walking in with no assistive devices (SSSSHHHHH!!!! Don’t tell my doctors!), a rollator (a walker with a seat to rest on & I’m lucky enough that mine converts to a wheelchair if I get too tired), or a standard wheelchair. Soon, I will also be throwing a powerchair into the mix because I don’t have enough assistive devices taking up space in my home already. Anyway, it makes purchasing tickets a bit more challenging. Do I need to purchase handicap seats, do I buy a ticket near the top so I have a place nearby to put my device, or do I hope for a fantastic day & just blindly pick the best available cheap seats? Fortunately, I’ve learned that I have stressed about this way more than I needed to because at every stadium we’ve gone to the staff have been super helpful!

After making calls before buying our tickets at each stadium, I’ve learned that no matter what seats we purchase, they will make accommodations depending on how I’m doing and I’m always amazed at how nice everyone is. If I can’t handle the steps to my seat that day, there are usually handicap seats in reserve or a few seats available in the nosebleed section. Most ticket sales offices have told me to simply purchase the best available cheap seats & if I need to make changes to handicap seating, I can call before the game and they will change it. If I forget to do so (my memory is absolutely terrible), and I show up in my wheelchair, the staff that help you find your seats suggest alternatives & show us where to go. When we purchased season tickets, I expressed concerns after the purchase was made & they made sure our seats were in the upper row closest to the handicap section. If I can manage the 3 steps to my seat, my hubby parks the rollator in the handicap section for safekeeping & joins me. If it’s a particularly rough day, I’m wheeled to the handicap section & they bring seats for the rest of my family.

Watching for that homerun ball to head our way

Weather is another factor that I never considered before other than to wonder if I packed enough sunscreen or needed jackets. Temperature is a common trigger for MS symptoms. If it’s too hot or too cold I may be able to make it to my seat, but I will have one heck of a time making it back up the stairs. So far I’ve been lucky & the only thing I’ve noticed with heat is that I can’t do hot tubs anymore, but cold is a major game changer. For those of you with heat sensitivity, I’m told cooling vests are amazing! The first NFL game we went to after my diagnosis was incredibly cold. I had no trouble walking down the steps to our lower level seats (well, no more than usual anyway), but when it came time to leave I could not get my legs to cooperate at all. My left leg kept collapsing and neither wanted to move. Fortunately, we were with a group and had plenty of people to help me get up, but I was terribly embarrassed. If it’s even slightly chilly, I’m bringing a coat to wear over my sweatshirt and I’ve got a blanket to cover my legs. I try to save as much energy as possible the day before and day of the game so I have enough spoons left for fun (see my Spoon Theory post if you're not sure what that means) and then make sure to enjoy the moment. It’s still tricky sometimes, but at least I feel more prepared.

Great seats, but so cold!!!

Our kids are older, but some things never change. They still say they’re hungry or thirsty five minutes after we sit down, and Turtle Monroe is still young enough to get fidgety if the game isn’t as exciting as she’d like. There are still moments where we don’t get to actually watch as much of the game as we’d like because we’re trying to keep an eye on them a row or 2 away while they’re sitting with friends. Despite the challenges associated with attending, I wouldn’t miss out on these memories - they’re too much fun! The kids dance to the music, we learn all the cheers & shout with the crowd, and it’s always big grins & high fives when our team scores. I love that even though my mobility has changed, we can still make our way into the stadium to root for the home team!

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Surviving A Sleepover

Imagine having the scary night described in my previous post followed by a 10yo sleepover the next day. Yep. That was my weekend and, even though I’m pretty beat at this point, it wasn’t terrible. Careful planning is key when you’re having difficulty speaking and any movement is exhausting, but we pulled it off and the kids had fun.

Turtle Mae’s friend joined us yesterday after school for a sleepover and I knew it would be a challenge, but was determined not to disappoint the girls. The biggest concern was how to keep 3 girls occupied, happy, and fed while I could lounge on the couch and recover. I spent the morning and afternoon on the phone with various nurses because I promised I would call my primary care physician (PCP) & neurologist if anything changed which led to frequent callbacks throughout the day. Mostly though, I called because my mom & sister kept calling and texting until I did just that. The good news was that they didn’t want me to come in that day, but I am scheduled for next week tentatively and some of my medications were adjusted. The sleepover wouldn’t be derailed by a visit to the hospital for an MRI - one less worry taken care of.

Next up, food. Depending on their mood they can eat just a small amount or my entire food supply and it’s difficult to tell until the festivities start. I went online and scheduled delivery of a couple pizzas & sides, made sure the cupboards had plenty of snacks, and my hubby did the dishes so we would have plenty to dirty up again. I figured they could munch on pizza, popcorn, granola bars, chicken nuggets, sandwiches, fruit, carrots, cheese, and cereal without me having to cook. Done.

Delivery is a lifesaver when fatigue kicks in before a sleepover!

We already had our tickets to the Hounds, so I purchased an extra one right next to us and my hubby pulled out cash for treats at the game. We’ve got tons of movies and also an Amazon Fire Stick with lots of options so they would have plenty to keep them occupied for the evening. Batteries were placed in the Nerf squirt guns, cookie dough was thawed, hoverboards and video game controllers were charged, and we’re fortunate to have a swingset and woods to explore so that would be enough to keep them busy until her mother picked her up the next day. We were ready.

Ready for the game!

The only thing I wasn’t prepared for was just how much energy 3 young girls can have when they’re excited. How could I forget the late night shenanigans my friends & I had when we did sleepovers??? The shrieks, giggles, and running through the house and all the chaos that creates with 2 dogs did not help my headache, but they were having lots of fun and not really hurting anything. I’m definitely not going to shut down the memories being made since it’s not every day that a friend stays over, but I did send them outside several times when things got a bit too loud so I could keep my sanity and my poor hubby could get some sleep after working third shift.

Beautiful night for a game!

The kids cheered for the win, ate their fill, wore themselves out, and are already planning their next sleepover. I’m tired, but I regained my ability to speak without concentrating extra hard and will be returning to work tomorrow. We survived the weekend! I’m going to celebrate this by taking my medication, crawling upstairs to bed, and snuggling with the dog as I snore away my physical exhaustion. I was told I should cancel the sleepover and even stay home from the game, but I would’ve missed out on all the smiles & laughter. Either way I would be sitting down, so why not sit and watch the fun instead of skipping out on it entirely and feeling sorry for myself? Easy choice! Are there any tricks I overlooked? Feel free to let me know any extra secrets to surviving sleepovers so I can use them later!

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Scary Night

Alright guys. It’s tough to admit to the reality of things when they get bad, but the whole point of this blog is to be open & share my experiences so I’ll take a deep breath & do just that. Last night was scary. Definitely an upside down turtle kind of day. I had been feeling physically exhausted the past few days, but pushed through small tasks here & there just so I wasn’t sitting around every day. Not too much, but better than nothing so I wouldn’t tell myself I was just being lazy. Yesterday I did the same and cleaned the litter box, then scrubbed the floor underneath while taking breaks to rest. I spent a lot of the day lying on the couch, but by evening I was feeling pretty foggy & just out of it and told my hubby. An hour or so later, I tried to ask him if he had any dinner ideas for the kids because I was too tired to cook much, but I couldn’t get any words to come out and just made odd grunts. I tried to get up and found that my arms & legs felt like they weighed 1,000lbs each and I couldn’t budge them. My muscles felt tight, but absolutely refused to move. I was trapped and unable to communicate with anyone. Scary.

Fortunately, my hubby was able to call off of his third shift duties and stay home to help out. He cooked dinner, made sure the kids did their homework & were ready for school in the morning, made me comfortable, fixed me something to eat when I regained some use of my left arm a few hours later, and carried me upstairs to bed. This morning he helped the kids get ready & made sure I was comfortable downstairs before taking a nap since he’s working tonight. I’m so lucky to have him!

With concentration and effort, I am able to stumble slowly to where I need to go. I’m exhausted and sore, but I can communicate. Turtle Monroe, who tried to teach me to speak again last night (say “you” Mom, that’s an easy word: Yuh-eeeeeeeww), has already mentioned something about it to her teacher this morning and Turtle Mae spoke about it with her grandma on the way to school. I feel bad for upsetting them and I knew they were worried last night, but I couldn’t tell them I was fine or that it would be ok. I couldn’t even give them hugs. What kind of a mom can’t comfort her own kids?

If I’m truly honest with myself, it scared me a bit too. Is this a glimpse into what my future will be? How much will I actually recover from this relapse and how much is permanent? How can I be prepared if it happens again? In the past 2 years I have already lost so much of my independence, how much more will be gone in the next 2 years? So many questions without clear answers, but I have to trust that it will be okay. Take some deep breaths and focus on the positive.

The sun is shining this morning. We have tickets to the Charlotte Hounds game tonight. My family members are safe & healthy. I am able to move and speak and smile. It could be worse, but it’s not. I could choose to worry about a future I can’t control and drive myself to a mental breakdown by focusing on the what ifs, but instead I will use yesterday as a reminder. As cliche as it sounds, each day truly is a gift to enjoy and even when I’m exhausted there is still good to be found. Last night was rough, but I am lucky enough to be surrounded by a loving family and good friends to help me through the bad days until the clouds lift and the sun shines again. I am blessed and everything will be fine. No worries! How do you stay focused on the positives when the negativity starts closing in on your thoughts?

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Fun With Spoons

Check out this lovely necklace made for me by my awesome friend Andrea at Purple Dragonfly!

Have you heard of the Spoon Theory? It was originally written by Christine Miserandino, a young lady with lupus, who took spoons from nearby tables to serve as a visual aid when asked by her friend about daily life. She had her friend describe their daily events & removed a spoon for each task. People with MS or some other chronic conditions have adopted it to give others an idea of what life is like for us. Basically we all start with a specific number of spoons of energy, sometimes less & sometimes more, but those of us with a chronic illness always need to be conscious of how many spoons we have for the day & how we will use them. Getting a shower = 2 spoons, eating breakfast =1 spoon, going to work = 4 spoons, etc. Depending on the individual and the type of day they're having, the number of spoons used for each task varies, but once your spoons are gone they're gone. You may borrow from tomorrow's spoons, but you will have less for the next day. This just means that if we're going on an outing for the day, I need to rest up the day before or the day after because, odds are, my daily ration of spoons will not be enough. With careful planning, I can usually get a few tasks in & still have enough spoons for fun! For more detailed info on the Spoon Theory, read Christine's post.

Even though I have to be careful how I use my spoons, I still have lots of fun! I may not be able to chase my kids around in a game of tag, but we find other lower energy ways to have fun. We still go to ball games of all sorts, visit theme parks, and have adventures outside of our home. If we're staying in we'll play board games, have a baking contest, do some quick crafts, or something else that won't drain my strength too much. See below to find out what Herbie & I did with our spoons today!

We played a fun round of Battleship with Turtle Mae!

Looked at some of the old DC Unexpected comic books

Finally, we watched the girls play some Minecraft before enjoying a little UFC 2 before bed

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Why Herbie?

I know you've seen pictures of him in my first post, but you may be wondering how Herbie came to be the mascot of my blog. I wish I could say he's been in my life for ages & we have a long history of mischief, but that isn't true at all. If my blog had a different title, Herbie might never have been chosen as my companion.

My sister & I kicked around a few ideas for blog names, but actually came up with The Upside Down Turtle while joking about T-shirt designs for next year's MS walk. Some days with MS are good & I can move along, slowly, but I get there eventually. Then there are the days I feel exactly like an upside down turtle. My world has been flipped, I can't walk, & I'm completely stuck. The blog title was perfect, and better yet, available.

Once a title was chosen, I knew my blog would need photos....lots of photos. I'm not exactly the most photogenic person & I absolutely despise having my picture taken. If my title was going to mention turtles, I would need a cute mascot to match. My sister & I looked at tons of cute potential buddies, but ultimately I kept coming back to the same stuffed turtle. There was just something about him that none of the others could match. He was the one and would need a perfect name.

Herbie means "illustrious warrior". I talk about MS a lot and my daily struggles with it and I wanted my companion to have a strong name to reflect the challenges we would face (corny, I know). I looked up names meaning strength, fighter, warrior, etc. In the end, my top three were Finian, Herbie, & Gus. You of course know which won out after the kids took a vote. Ta-da! Herbie was officially born! The kids wanted to make sure I shared some photos of his first day in his new home, so we picked a few for your viewing pleasure!

He's arrived!!!

Lazing on the swingset while watching the kids run around

Naptime snuggles

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Don't Stress About The Mess

I don't know what your house looks like, but mine doesn't exactly look like one of those beautiful homes in the magazines where everything is perfectly in place. We have an overwhelming amount of stuff. If you visit, you'll probably find toys in nearly every room, dishes in the sink, piles of laundry that need washed or clean clothes that need put away, & just general clutter.  I fill trash bags & my hubby takes them for donation or the consignment shop, but I swear the stuff just multiplies after each load leaves! I would love to have a gorgeous clutter-free home where everything is perfectly clean & organized, but I also enjoy hanging out with my kids & hubby. Energy is limited so I make sure the worst messes get taken care of & leave the stuff that can wait so I'm not too tired to make memories.

Usually, I feel really guilty about the state that our home is in & my inability to get things caught up. I should be able to clean my own house, but the reality is that it's incredibly difficult to complete just one task so the odds of me doing several are pretty slim. The kids may grumble about their chores, but they are really good about helping Herbie and me out & I'm incredibly grateful to have such a fantastic family. Even though we're always behind on housework & the clutter is ridiculous, the dirt is cleaned up (mostly).

At least the coffee table is clean!

Struggling with balance between a clean house & fun is not a problem exclusive to those of us with MS. At the urologist's office today, the nurse & I had a chance to chat while waiting to use the ultrasound machine. Now that her son is getting married next month, she was reflecting on all the time spent cleaning that cut into her time to spend with her children before they grew up and warned me not to do the same. She said that when her kids were young, she would make sure their house was pristine - always fussing over anything out of place or a speck of dust on a shelf. The nurse sighed and said, "All that time wasted." Nowadays, she makes sure her house is still clean, but doesn't obsess over it & instead focuses on enjoying life.

 I can't be the only one looking around at the mess and feeling like a terrible parent. As long as your home is clean enough to keep you sane, let go of the guilt & leave the rest for the days when you have extra time & energy. The mess will always be there, but your child looking at you with those big eyes begging you to play with them will not. What fun thing will you be doing today?

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Definitely Not Meant To Be A Chef!

I’ve never been a great cook. My sister loves to tell everyone about the time I hollered for help because my thumbs were stuck in an egg I was trying to crack. My college friends will share that I cooked all my meals, and even their birthday cakes, in the microwave. My husband will tell you that for the first couple years that we were married, I frequently ruined meals & had to measure the amount of water to boil for macaroni & cheese. You get the idea…

While I’m not as terrible as I used to be, I’m still not fantastic. Most of my new recipes are failed attempts. Every once in a while, I’ll have a happy accident where I made it incorrectly, but it still tasted okay. Usually, I’ll tell my hubby I’m trying something new & he tries to hide a sigh. Sometimes he’s pleasantly surprised, but most of the time he’s right to be concerned.

Lately, I’ve been trying to eat healthier (think lots of smoothies & salads). I’m trying to give up grains & dairy, but it’s been difficult. My cupboard is now filled with coconut flour, arrowroot starch, tapioca flour, nutritional yeast & other ingredients that are foreign to me. Herbie & I are a bit skeptical that we can make a yummy “cheese” sauce with potatoes, carrots, & nutritional yeast. I’m sure we’ll let you know soon how that comes out! We will try anything once, so if you have a great recipe feel free to share it & I’ll be sure to post photos of Herbie helping me make it!

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