The Brain Fog Battle

​March is Multiple Sclerosis Awareness month. So, it seems somehow appropriate that this month I had my first part of my new Rituxan infusion treatment. It is a more aggressive treatment that will hopefully decrease the disease progression and help keep my joint condition controlled, as well. It was something I had spent months going to specialists and advocating for. Once the initial sleepiness from the pre-treatment Benadryl passed, I felt great! Great enough to not be able to sleep until 3:00 AM. I’m pretty sure that was a side effect of the pre-treatment steroids. But after less than 4 hours sleep, I got up, went to the dentist, dropped off a book sample at the local children’s toy and book shop and then picked up my first check from Polly’s Pancakes for their order of my “Purple Moose Makes Maple Syrup” book. It was warm and sunny, and all in all, a pretty great day. I felt the best I had in what seemed like weeks. 

I had been feeling off for almost two weeks prior to my treatment. I saw my primary care and my rheumy, and neither knew what was going on. I did my best to ignore it. It’s an occupational habit of chronic illness. Occupational, because managing a chronic disease becomes your job. Today was the first day in over a week that I actually felt human. My brain worked, I didn't feel exhausted, or sick or like I was going to faint when I bent over. Though I wanted to thank the infusion, I realized tonight there was much more to the story. 

​I filled up my med container on Wednesday, the day before my treatment. When I took my meds Friday, I realized that there was no prednisone in it. Surprised, I went searching for the bottle. It wasn't in my bag with the other meds. Instead, it was mixed in with a couple other bottles that are only used occasionally, and it was almost empty. Tonight, I pulled out the bottle again to add the prednisone to the other days in my med case. It holds 8 days, and I usually do an extra day, to keep from having to fill it again earlier. Sadly, I often forget to take them at least once a week, too. When I looked at the refill date, it should have been filled March 4th. Today was March 15. That's when it hit me. I hadn't taken a prednisone for at least 10 days. I never put it in my med case last week. I only put in the meds that were in the bag.

---

​When I began taking low dose prednisone to control my Mixed Connective Tissue Disease many years ago (it was a wonder drug for me), my thyroid doctor insisted that I get a medical alert bracelet. If I were to stop taking it suddenly, I could suffer from adrenal insufficiency. I was supposed to carry a shot for it. I got the bracelet, but quickly stopped wearing it. I was never able to find a pharmacy to fill the necessary shot I was supposed to carry and I just gave up.

Tonight, I looked up the symptoms for adrenal insufficiency. It was like looking in a mirror of my last many days. 

---

​Except for the 3rd and the last one, they were exactly what I was experiencing. I was both relieved and frightened. How had it happened that I had gone over a week without realizing those tiny white pills were missing? Yes, I had been preoccupied with the book and was pushing as hard as I could to use every bit of my energy for that. Still…. It was a humbling and scary feeling.
 
Brain fog is one of the most frustrating elements of my MS for me. I used to juggle numerous students, subjects, responsibilities and individual needs all while eating, filling out paperwork and parenting. Now I struggle to fill a pill case properly if I’m distracted (which I think I was when I filled it). It’s like losing IQ points. It is worse than losing leg function. There are ways to compensate for my legs. My brain fog requires a more humbling system of lists, simplification of tasks, double checking and self doubt, as well as a careful watch for too much fatigue, because that only makes it worse. It’s like I have become my own special ed teacher. 

---

​I knew something was wrong. I knew it was more than the usual struggles. The extreme lightheadedness was the most scary. The abdominal pain and nausea was the most annoying. The lack of hunger and weight loss was a perk, lol. I almost went to the ER a couple of times, but I was so afraid of being admitted and getting worse, that I refused to seriously consider it. Truth be told, without my med alert bracelet, I doubt they would have been able to figure it out. I didn’t even realize I wasn’t taking them.
 
I have made the unfortunate habit the last few months of ignoring my gut feelings. Instead, I tried to make purely logical decisions or ones that pleased others. The car I bought was great on paper, but in reality didn’t meet MY needs at all. (Anyone want to buy a great Subaru?) That’s when I decided it was time to break the habit. It was time to start listening to my gut. I could point to dozens of small and not so small decisions I made while ignoring my gut, that all turned out badly. This time, it could have been much more serious.

---

I’m not exactly sure when I stopped listening. I suspect it happened a little at a time. Facing too many circumstances beyond my control that I just had to accept, made accepting unwanted things easier. That is a double edged sword. It becomes too easy to push the internal unease away. Though I had already decided to break the habit, this really rattled me. It is time to really start listening to my body and my gut. If I don’t listen when it whispers, I will have to face it when it screams. I’m not sure if I will start wearing the med alert bracelet again or not, but I will at least dig it out. And look again for prettier ones online. To listen to my gut means I have to take care of myself, and I need to provide the information necessary for others to be able to help me as well.

---

​The scale says I have gained 3 pounds between starting the steroids again, and the IV steroid prior to the infusion. But to have my brain clearer, and have the additional pain and discomfort gone and the ability to bend over to get the dog food bowls without fearing I was going down, it is so worth it. My gut says it is all part of taking care of me. And I’m listening….
 
UPDATE 1: The effects of the steroid treatment that came with my infusion has come and gone. I am back to a more normal dance of activity and rest, and brain fog strategies. The surge of energy and clarity that came with the the treatment, though exhilarating, was much like the commercial for mania currently on TV. It was great to have energy, but the intensity was exhausting, not to mention the lack of sleep.

Still, I am grateful. Grateful for the treatment which will hopefully keep me from getting worse. Grateful to have the opportunity to write both my blog and my Purple Moose books. They are things that help me to feel like myself. My blog allows me process and accept the new me. The Purple Moose books allow me to connect with old me. Together they help create a path to follow. 

Update 2: The second half of the infusion is complete. There was no magic improvement, but I can only hope and pray that it keeps further regression at bay. My Purple Moose events were wonderful, but draining. It seems unfair that the fun in life takes the same toll as the difficult activities. So the dance continues. The ever present balancing act of using my body and my brain. I have often said I can use one or the other, but don't expect me to be able to use both at the same time. The hope of the warmth of spring weather seems just out of reach, but is close enough to feel its presence. Spring comes hard to the North Country. Regardless of the weather though or how I feel, the goal for today is the same as every other day. Get up. Live. Listen. Learn. Love. Create. Hmmmm. Sounds like the inspiration for a future blog post...

---