Lesson Learned (Follow up to Scary Night)

It seems no matter how many articles I’ve read about MS, there’s always something new to learn. Several of you read my post about last week’s scary night, but I now have some not-quite-so-scary answers.

Even though I called my neurologist’s office the very next morning, my appointment was made for nearly a full week later. When I was discussing with my doctor what I had experienced, she stopped me and looked at me like I was crazy. “This was Thursday? Why didn’t you see someone immediately?” I had no idea that’s what I was supposed to do. There didn’t seem to be too much concern when I called and I really didn’t know what they could possibly do for me anyway. Besides, I was sure it was my MS and I was slowly improving again so I wasn’t too worried once my ability to move and speak returned. Apparently, this is unacceptable. Who knew?

Before I explain what actually happened, it’s important to know what a relapse officially is. I am in no way, shape, or form a doctor, but I'll give you my understanding of how things work. When you have a new or worsening symptom that lasts at least 24 hours that can’t be explained (like overheating or pushing yourself too hard) and is likely accompanied by new lesion formations, that’s a relapse. There is no one spot in the brain, spine, or anywhere else in the body that controls everything where a new lesion could form and take several functions out at once, so what I experienced was not an actual relapse as I originally thought. It was, however, what they call a pseudo relapse.

MS damages the myelin sheath of the nerves so they work about as well as this cord does

A pseudo relapse can be a good thing because it means MS is not progressing, but if the underlying cause is an infection (most likely if there are no large stressors at the time) it may trigger an actual relapse if left untreated. I was completely unaware there was such a thing & had no clue what that meant. My doctor explained that when you have an infection, your body is using a lot of energy to fight it off and that most people without MS may feel tired, but can still power through. When we have damaged pathways because of MS, our body uses extra energy in its attempt to push signals along these paths and sometimes it is forced to make the choice between continuing to use excess energy to force the signals or focus on healing the rest of the body. When it chooses the latter, you have a pseudo relapse.

Pseudo relapses are frequently more difficult to deal with than an actual relapse simply because you’re dealing with more symptoms at once. During a true relapse, you may have blurred vision, difficulty using your right arm, or slurred speech; basically you’re just dealing with one or two issues. During a pseudo relapse, any problems caused by your lesions in the past may hit all at once which was my case last week. It’s much more difficult to function and recover. When it hits, you are to immediately go to the neurologist, primary care physician, or ER to get a urinalysis & bloodwork to determine the type of infection and get it treated quickly to prevent further damage. Clearly, I didn’t do that.

The good news for me was that even though my doctor said 9 times out of 10 in women a pseudo relapse is caused by a urinary tract infection, it was not the cause of mine or I would’ve been in the hospital days ago since they don’t go away on their own. After some discussion, we decided mine was most likely triggered by a stomach bug. I had been over it for about a week by the time my pseudo relapse hit, but I had the infection for over a week before getting better. She said my body just needed to take a break to catch up from my trying to power through the illness. In her “I’m so disappointed in you” mom voice, my doctor scolded me for not taking time off work and resting enough during that week and a half. I had to promise that from now on, whenever I have a fever, vomiting, or diarrhea I will not wait it out with optimism that it will soon go away on its own. Instead, I will make an appointment with my primary care physician the first  day of symptoms and remain off work with lots of rest for the duration of whatever bug someone (usually my kids) decide to share with me. Ugh.

For now, I’m speaking normally and moving around much easier, albeit more slowly than I was a few weeks ago. I’ll make sure to always have hand sanitizer nearby and try to avoid getting sick as much as possible. I was overwhelmed by the number of people who read my post about last Thursday evening and appreciate all the private messages expressing concern and encouragement! You guys are amazing! I have a knack for annoying my doctors, family, and coworkers with my stubbornness, but I will do my best to behave (mostly) and rest a bit more when illness strikes to prevent this in the future.

Occasionally, I may need to retreat into my shell and take a nap

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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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