Welcome to MS, where you need a nap after taking a shower.
Ardra Shephard
I follow a woman on Instagram named Ardra Shepard AKA ms_trippingonair. When I was first diagnosed this past January, my Sis looked for influencers with MS on social media so I could follow people going through what I’m going through. How sweet is that? 💛 This lady is funny but she’s also super real. Sometimes she’s way too real for me. I’m not there yet. Sometimes it feels like a glimpse into my future and honestly I can’t handle that, yet. The other day she posted something that really resonated with me. She said,
Be gentle with yourselves, Trippers. MS is a thief. MS steals your energy and then tries to convince you that you should still be accountable to the same standard as people who can rise and shine and somehow stay awake for 16 consecutive hours. If your car runs out of gas you wouldn’t try to drive it anyway.
No I wouldn’t drive my car if it was out of fuel. So why do I think I can run my body that way?
This week I had an… Episode. I don’t know what else to call it yet but it’s technically a pseudo flare up. It’s my symptoms flaring without getting any new symptoms. New symptoms would tell me that I’m having a flareup like I did this past winter. This week my body told me I had pushed it too far and I didn’t listen. This is the biggest thing I need to learn as a person newly diagnosed with MS, how to listen to my body and what my limits are. I keep thinking this is like staying up partying all night and dragging your ass to work the next day 😆. It’s difficult but you push through, have a productive day and then go home and sleep for as long as you can.
MS isn’t like that. There’s no pushing through. There’s just a wall that you smack into that leaves you broken and disabled.
Last week I added another 2 hour client to my work week. It was a job I’m comfortable with and have been doing for years but it was my first time back since BMS (before MS). Last weekend was dress rehearsal. I thought it would be easier because it was just SBean and she only had 4 dances but I was wrong, it was so much harder. HBear is older and carries the bags for me and she basically does everything on her own now but SBean is 9. She repeatedly forgot things in the dressing room and I was up and down the stairs a good jillion times and by the end of the weekend, I was exhausted. Not normal exhausted but brain fog/blurry vision/lead body exhausted. On Monday I wasn’t feeling great but Ninja has been cleaning the dance studio for me since Christmas and these past few weeks I’ve been helping him which makes things go so much faster and he can get back to his job faster. We have had trouble hiring this year and the guys are working hard and long hours so I went to work. On Tuesday the sun was shining and Oliver was chomping at the bit to go for a walk so we walked SBean to school. I had a ton of errands to do before we walked back to the school to pick her up in the afternoon. By Tuesday evening I was out cold by 9:30 PM. On Wednesday I woke up tired. All my symptoms were pronounced. Throughout the day I had errands to run and laundry to do. HBear had gotten red lipstick all over her white hip-hop shirt 😬. I dabed all the spots with rubbing alcohol, blotted and rubbed it out with cold water and then threw it in the laundry and it came out as good as new! Thank God! 😂 Throughout the day I started having MS hugs. Hugs are when a band under my rib cage tenses and clenches causing major chest pains making it feel like I’m having a heart attack. Yay. They fade away given time, loose fitting clothing and by laying down. The pain gave me a massive headache and stole all of my patience. I snapped at SBean, yelled at HBear, and Ninja who didn’t understand what was happening got angry with me. And then we had to go to HBear’s band concert.
Here’s the thing, I should have listened to my body and said, “I should stay home.” However, HBear expected me there and Ninja didn’t say, “you should stay home.” He couldn’t see what’s happening inside my body plus he had worked all day and he was tired and no matter how your day was… you just go to your kid’s band concert.
Don’t you? Yes… except if you have a neurological disease that doesn’t allow you to push through a long day.
Don’t get me wrong this is not Ninja’s fault even though I did try to take it out on him originally 😆 but he did not need to give me permission to listen to my body. He is a healthy, efficient, and a young(ish) 😜 man. He has no idea how exhausting it is to fight your own body every day. He has no idea how frustrating it is to be unable to do simple tasks that once seemed second nature. He has no idea how scattered my mind is right now trying to keep everything in it’s proper file folder in my brain. I like my brain to look like my bedroom. Organized, clean, and calming. Unfortunately my brain is beginning to look like my bedroom when I was 17 and that’s scary AF! He doesn’t know that I feel like I’m learning to walk again in this whole new life but it feels like I’m in the middle of a triathlon and everybody that I’ve been training with for years just assumes that I can keep up.
I’m beginning to realize that I can’t.
Once we got to the concert I couldn’t breathe. The pain in my chest was so intense, I couldn’t see anything because my eyesight blurs when I am experiencing an “episode” and it was so hot in there especially with my mask on that I couldn’t focus on anything the people around me were saying. I was rude to my family and to my friend who I was sitting beside. I didn’t mean to be. They all forgave my behaviour but before the concert even started I was flying out the door. In tears. Ninja quickly drove me home and I laid in bed crying for the entire concert.
I felt like a failure. I failed HBear, I failed my in-laws, I failed SBean, Ninja, and my PreSchoolBesty! I felt awful. All of this could’ve been avoided if I would’ve just listened to my body but I thought I could ignore it.
I can’t.
This weekend was dance finale and I had to take a BIG step back so my “car” wouldn’t run out of gas.
It is so hard to explain to people that don’t understand. I’m not blaming anyone, it’s just a fact. Until I was diagnosed with MS… I had no idea. It’s like a person with no kids saying they’re exhausted when you have a teething toddler and a newborn at home 😳😂. When I say I have a good day it means my symptoms aren’t as bad. However, they are always there. Doing errands and laundry seems like nothing but to me these are mountains to climb. That’s crazy! I’m having trouble wrapping my mind around that! Now I’m crying again. This is crazy! This is my life… WTF? I don’t know how to do this.
Thank you for your support, grace and positivity. I am a work in progress 💛.
Check out How Was Your Week, Honey? Episode #280: Don’t Leer! HERE! This week, we get together in the middle of Dance Finale to discuss: young women, Mark’s, tam vs beret, band concert, Year End Show, summer visitors, Who Knows Who, new playlist & anxiety.
One of my favourite local restaurants is Cambo Beach. It is a little gem on Lakeshore with a patio overlooking the Okanagan Lake. They have the BEST Vermicelli Chicken Bowl! HBear and I crave it and we order it often for our weekly eat local night!!! So we decided to try to recreate it 😁. Cambo uses grilled chicken and spring rolls in their bowls but we omitted the chicken and just used veggie spring rolls to keep it meat free. I wish I had peanuts to add to it but we were all out! Next time for sure! HBear said it was even better than take out!! I LOVE this dish and I see it being a regular dinner throughout the summer. It’s so fresh and perfect for a hot day. Ninja loved it and SBean ate it ALL and asked for more!
Vermicelli Salad Bowl
¼ cup fish sauce
¼ cup sugar
⅓ cup water
2 tablespoons lime juice (half a lime)
2 teaspoons rice wine vinegar
1 clove garlic, minced
1 tablespoon carrot, shredded
1/4 teaspoon chili garlic sauce (or more if you like spice)
1 package rice vermicelli noodles
1 handful cilantro, roughly chopped
1/2 cucumber, julienned
2 carrots, peeled & julienned
1/2 romaine heart (light crunchy part), shredded
12-16 spring rolls
1/4 cup peanuts, chopped (didn’t have but will add next time)
1/2 lime, cut into wedges
In a bowl, mix it together fish sauce, sugar, water, lime juice, rice wine vinegar, garlic, and chili garlic sauce until the sugar completely dissolves. Add the shredded carrots right before serving.
Make vermicelli according to package instructions, then drain and rinse under cold water.
Cook spring rolls according to directions on pack. I air fried ours! Slice them when cooked and set aside.
Place the noodles into bowls and then place the carrots on the side along with the cucumber, cilantro and shredded lettuce. Drizzle 4 tbsp of sauce overtop of everything. Then place the sliced spring rolls in the middle of the bowl. Serve with lime wedges.
This was a week. I did yoga and my plank challenge for the first half of the week before my PFU (pseudo flare up) and earned a new FitBit badge! Oliver is getting more comfortable going for walks and it has been SO nice to see the Kids getting out with their friends. It seems like it has been so long since they had friends over and it was no big deal. Covid has screwed a LOT of things up and I’m just happy to see my Kids being Kids again. SBean likes to go to the park with friends she has met that live around us and she goes to school with. HBear has been going to friend’s houses to watch movies, play D&D, and she had 2 friends over the other night to bake cupcakes for the Diversity Club Bake Sale! They did a bake sale and they did face painting to raise money to buy more diverse books for the library 💙💚💛💜💗.
SBean finished skating lessons and moved up to level 4, I went to the library, had a meeting about marketing my blog, got spooked by the deer lounging in the front yard, and SBean brought home some sunflowers she started in class. HBear showed off her stuff at her concert, performing with the Concert Band, the Jazz Band, and her Jazz Ensemble group playing drums, percussion, and the trombone! So talented!
This weekend was dance recital! They had 3 shows with a total of 20 dances between the 2 of them! The Kids were so excited that Uncle Seb, SPea, Grandma, Grandpa, Papa, J and her Mom were cheering them on in the audience. SBean also invited her Besty from school and HBear invited 2 friends from school that all came out to support! It was awesome! In-between shows we went for ice cream at the new shop Cherry On Top Shake Shop!
It has been a hard year on HBear & SBean and they finished the dance year with grace, strength, maturity and with a smile. I am SO proud of them both 💛. They both made some new friends and saw some old friends in a new light. They made some important decisions about their futures and going forward will be more focused on what and who brings them joy 😊.
On that note, while SBean wants to keep 2 dance classes next year, she would like to explore her other love… gymnastics! Before the final show on Sunday she went to the tryouts for the gymnastics team and she got an email later that night inviting her onto the team! She is SO excited!! I’m proud of her for trying something new and committing to it 💛.
We ended the weekend in bed, cuddled up, watching the latest Kenobi episode. It was a rough week but it had SO many highs that I’m chalking it up as a BIG win.
