Health · Perspective

Invisible Symptoms

Today I’m filling a chair. That’s virtually it. At work, I’ve answered the phone (a lot), taken messages, updated the website and made a to-do list. But…. much of that to-do list will just have to wait for tomorrow. My brain is altogether exhausted.

When a brain is tired, one might think it’s from being a contestant on Jeopardy or perhaps sitting at an important round-table business meeting. Today, my brain is fatigued from a main platter of MS with a side of crazy female hormones. Friends, that’s a bad combination!

Last week, my husband and I trekked to Denver for my annual neurology appointment. Overall, I’m doing very well and MRI-land is completely stable. We both love being active and outdoors, so in addition to the yearly neuro appointment we spent the day in Rocky Mountain National Park.

I met with a new-to-me neurology NP for this appointment the day after our hike. This was the most informative appointment I’ve ever experienced. Perhaps this was because she had a medical student with her? The med student actually performed the physical exam (the works – walk on toes, follow finger, tell me when the vibration stops on your foot…). With each test, she explained whether my results were “normal” or “typical of MS patients.”

My three biggest concerns were addressed. Two of these, I’ll talk about here. Numero Uno is fatigue. I found myself needing 20-40 minute naps a few times a week this summer. If you read my previous post about our summer activities, you’ll see a constantly on the go schedule. Who had time for naps?!

Guess her prescription. Seriously, just guess…

It was to…. TAKE NAPS. Her exact words were “a nap can do more for you than any medication I could prescribe. You need to take the guilt out of getting rest.”

She explained that where the lesion is on my spine, I have a “loss system with invisible symptoms.” When my brain contacts my legs (and thankfully they still do), my legs hear the request as a whisper and they SCREAM back. It takes my body more energy to do things because the lesion slows down communication.

When my legs SCREAM back, it comes across to the onlooker as over-reactive reflexes. This was my second concern. My feet and legs have such a touchy reflex that spin class is difficult. As my body heats up from exercise, they become even MORE over-reactive!

Her response: “Get used to it and be happy about it.” Well…. alrighty then… She further explained that I should be ecstatic that my legs and brain are communicating. I guess that means that I’ll strap my feet into my spin bike and just roll with it (pun intended).

After my physical examination, she told me that I’m doing all the right things. I’m drinking a plethora of water daily and my nutrition is good. Continued exercise and guilt-free sleep are my  prescriptions in addition to the Tecfidera.

When I relayed this information to a nurse friend of mine, her response was that it was refreshing to have a medical professional NOT push medication. Instead, she recommended I go back to the basics of self-care: sleep, exercise, and water.

Thus, I have. I napped both Saturday and Sunday. I exercised in some form 6/7 days last week. Water? Always 90-110oz a day.

I can’t reverse the damage already done, but I can make sure I’m doing everything possible to prevent progression.

Much love — Jen

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