It’s been a minute… one year to be exact since my last post.
A lot has happened. And I have been doing a lot of processing in this season. And when I process, I do that best through writing. So, my hope and prayer is that by processing out loud, you–dear reader–may get some clarity or perspective for your own life. So read along if you like and take what you need. This life can feel incredibly lonely and if you get nothing out of my words, I hope you feel less alone.
A year ago, I started on a journey to figure out why I couldn’t lose weight. I had tried the same things I did 10 years ago to lose 180 in 2016 and nothing was happening. And then it felt like I would glance at a cookie and gain 20 pounds. My Gyn and I figured out I was in perimenopause back in 2024 and I started Hormone Replacement Therapy and that stopped the weight gain! And I was grateful. But I still couldn’t lose weight. Then, last fall I found an amazing new primary care physician and she listened. We brainstormed things together. We ran labs. We made an action plan. I began walking 8,000 to 10,000 steps a day. I prioritized protein and cut all sugar, dairy and wheat as I had done before, but the scale still didn’t budge.
Then, we dug into my thyroid and ran more bloodwork and had an ultrasound and low and behold, it appears I’ve been battling thyroiditis! My thyroid is all scarred from years of attacks and it’s not been functioning properly. This helps explain why I’ve struggled to lose weight in recent years. We began a low dose treatment to stabilize my thyroid and I kept up with the walking and pushing protein and the scale began creeping down! I was elated! 2026 was going to be the year Nora got her groove back.
Then came summer.
In the 11 years since diagnosis, heat, stress and lack of sleep have been my greatest enemies. One out of three gives me some neurological symptoms. Usually some tingling or a little dizziness. But a month of all three did me in. June came in like a lion and roared all month long. Stress. Raging heat outside. Busy schedules. Not getting home until late multiple nights and a few sleepless nights all added up.
I woke up on a Wednesday in mid June with tremors in my right arm and leg. By Thursday morning, the tremors were accompanied by numbness in my right arm and leg. By Friday morning, my foot didn’t want to flex when I took a step so I stumbled and tripped. I ran into door frames, bruising my arms and legs. My handwriting was sloppy at best and almost illegible at times. I couldn’t hold onto things with my right hand. I had to carry my water bottle, coffee mug, keys and purse with my left hand/arm if I didn’t want to drop them all. I couldn’t cut paper. The act of using scissors felt foreign. Like I was a preschooler learning to use them for the first time. My right side felt like it was taking directions from a Intel Pentium processor from 1993. All movement felt SLOW. And glitchy. At work that morning, I tripped over my right foot and nearly face planted and my boss said, “It’s time to go home. Get some rest. Call your doctor. Get better.” This moment left me feeling grateful but also mortified.
I don’t like needing help. We know this about me. I’m the helper. I like to be the one to jump in and fix things for other people… but as my sweet fellow Enneagram 2 friend reminded me in the midst of this season, we sometimes struggle with pride when we “aren’t the one to save the day.”
Over the course of living with MS for 11 years, I’ve been told to report any symptom that lasts over 24 hours. After two full days into these symptoms, I sent a message and got a call back pretty quickly. As I described my symptoms and concerns that the symptoms hadn’t gotten better and had actually worsened, she said, ”These symptoms are consistent with where your lesions are located, so we don’t think it’s a relapse. We think this is a pseudo flare–you’ve had one of those before, right?”
I had. But to me, a pseudo flare is what happened when I was training for half and full marathons. I would get too hot or push too hard, get a little tingly, slow down or be done with the run and get in the air conditioning and it would go away in a matter of a few hours. These symptoms had persisted and worsened for over 48 hours.
When I said, “yes… but not one that lasted this long…”
She gently replied, “Honey. You’re not 35 anymore. When you let your body get too tired or stressed or hot, it’s going to be a lot harder and take a lot longer to recover. Instead of 1-2 days, think 2-4 weeks… some patients even say it takes them 2-4 months.”
Weeks? Months?
I was devastated. I was proud of the fact that even though I had Multiple Sclerosis, I didn’t feel like I had Multiple Sclerosis most days. I went home from work at lunch that day and slept and prayed she was wrong. That I would wake up feeling much better.
I didn’t. I woke up feeling like I hadn’t slept in days. I was so exhausted. And my right side was dead. I could walk, but only really slowly and by gripping onto chairs and then the wall for stability. Against Brian’s wishes, I made him take me to a wedding that next day and that was brutally hard. I couldn’t find my footing in the grass and I felt very unstable. We survived and I didn’t fall, but after that experience my friend bought me a cane.
Up until now, I haven’t needed a mobility device for MS. And hear me say this – I am the first person to tell you to TAKE THE HELP! If a cane or wheelchair or walker or ECV means you get to live your life to the fullest, then do it! I don’t want anyone missing out on a second of joy because of this disease. But this was a hard pill to swallow. The girl who ran a marathon eight years ago was now the owner of a cane. I was angry. I was hurt. And I wanted a tangible thing I could do to start feeling better immediately… but there wasn’t. Just rest. Managing stress. Prayer. So much prayer. Worshipping. And letting my husband, kids, friends and co-workers help me. And they did. More than they will ever know.
My therapist and I switched up our every six week sessions back to every two. Brian took over laundry and groceries. My job became to go to work and do the best I could and then come home and rest. Nap when I could. Wake up and eat dinner. And then go back to bed.
My arm and leg stayed numb for two solid weeks. I ended up not using the cane. I found that if I walked really slow and focused on flexing my foot, I was able to walk without holding on to things. I looked like a baby giraffe taking it’s first steps, but I was making it work.
The fatigue set in much later. As I was regaining feeling in my arm and leg and doing activity, I found that I would lose all energy with little to no warning.
One afternoon in mid-July, I left work early and decided to surprise my husband my picking up groceries. He had been doing all of the shopping for a month. I had energy and it was an oddly cool day for dead of summer and I wanted to take advantage of it. I had plans to go to Kroger, Sam’s and Aldi. I went into Kroger without a meal plan or a list. This normally wouldn’t be an issue, but the thinking of recipes and ingredients became overwhelming. I couldn’t think. I couldn’t remember recipes I had made for years or where ingredients were in the store. And then using both legs and both arms as I walked and grabbed items and placed them in the basket combined with all the thinking of items and where items were located–it became too much. I broke into a sweat even though it was cool in the store. And I broke down crying in the middle of the canned good isle. I thought about calling my husband to come pick me up. But I didn’t (even though that man would have come running in an instant because he’s a literal super hero). I decided to stop shopping. I checked out with tears still streaming down my face and walked out to the car with my three bags of groceries. I loaded up and blasted the AC in my face and rested in the parking spot for 15 minutes before driving home. Three bags of groceries had taken me an hour and a half.
This felt very reminiscent of June/July of 2014 when I had my very first attack. Depression creeped in hard. On top of everything, I was going through some personal things that left me feeling incredibly rejected and alone. This disease can feel so incredibly lonely. It’s so hard to describe how horrible and scary it feels on the inside when on the outside, we look fine. How do you explain to someone that you didn’t have the energy or mental bandwidth to shop for groceries?!?!
We had a trip booked around Brian’s birthday and my goal became to be able to fully enjoy our time away. I started walking in the evenings again. Super slow and only a mile. I continued to prioritize rest, therapy and managing my stress. I was getting more and more days without numbness. And the fatigue was improving. My daughter and I added back in dates to Target and I could manage a loop around the store with an occasional break at the dressing room to sit and regroup.
We made it to lake Michigan and fully enjoyed wearing sweatshirts at the beach in August and our toes in the sand. And being near water. I love being near water.
A little over two months after the start of this Pseudo Flare, I am happy to say I think it’s over. I haven’t had numbness or tingling for longer than a few mins in about a month. I’m back to juggling 1000 tasks at once at work and enjoying it. I am proud to say that I can and regularly use scissors with ease :). I am doing laundry and buying groceries again. I’m able to stay up until 9:00 or 10:00 pm most nights (I know! Party Animal!) But I’m also managing myself wisely in the heat and I’m managing my stress. I’m better at asking for help when I need it and not feeling guilty about it.
I believe God uses “all things for the good of those who love him” (Romans 8:28). And because I believe that, I believe nothing is wasted. While I wish my family and I didn’t have to go through what we did this summer, I know He is working it out for our good. I got a reminder that I still have MS this summer. And that I have to take care of me if I want to be there for my husband and kids and someday my grandkids. I only get this one body. And she’s not perfect, but she’s good.
If you stumbled across this because you’re in a MS Pseudo Flare or a relapse, my advice and encouragement is to KEEP FIGHTING. Fight for JOY. Fight for PEACE. Fight for HOPE. This disease is not your identity.
Not Today, MS 