I stood at the kitchen counter folding the plastic grocery bags. I know, I know, you’re probably wondering why I fold the plastic grocery bags. Because they fit nicely into the pantry bag, that’s why. And I’m a little bit over-organized. We’ll take the whole pantry bag of grocery bags to the grocery store to recycle another day. Back to the story. I was halfway through folding the bags, and I just couldn’t anymore. I was just too tired to stand up anymore. Putting away groceries had overtaxed me. I had to sit down before my knees buckled and my body made me sit on the floor. I preferred to get to my rocking chair.
So, I did. I left the stupid grocery bags (I need to figure a way to automate that procedure) and sat down in my rocking chair with a book for thirty minutes. Now I’m writing. I have a headache but not a full-blown migraine, so the fatigue isn’t due to acute migraine. It could be pre-migraine. Or, it could just be fatigue of chronic disease. Whatever the proximal cause (if there is one), I’m fatigued beyond measure. I’ll hope for a better day tomorrow.
When I was still practicing Family Medicine, I did occasionally diagnose people with chronic migraine, but the diagnostic criteria didn’t include fatigue or brain fog, another exciting symptom. I generally referred these patients off to Neurology because we had come to the end of my ability to treat them. Now that I’m the patient, I’ve found that my Headache Specialist, even if he knows about these other symptoms, doesn’t seem interested in them. He is interested in head pain and sometimes nausea. The fatigue, brain fog, and generalized body pain are symptoms that come along for the ride, and my doctor is only interested in them if they are increased or decreased as side effects from medications. But, understand that I still think my doctor is an excellent doctor. He believes my illness and works hard to diminish my symptoms. There are very few headache specialists in our area, and I’m happy to have one that treats me well.
The fatigue and brain fog weren’t too bad during the first few years of my diagnosis. I had fatigue mostly during migraine days and often during my “hangover” days the day after a migraine - like a day after being drunk, but I don’t drink, so I’m taking people’s word for it. Nowadays, I get migraine fatigue often on “hangover” days, but also on other days “just because.” Some days, I can predict the fatigue, like if I didn’t sleep well the night before, or I was more active than usual. Other days, the fatigue shows up for no reason at all, like today.
But, hey, we all get tired. Just power through it and sleep more tomorrow night. That’s what the rest of the world does, right? That doesn’t really work for me. I’ve been tired. In medical school and residency, it wasn’t uncommon to work 36 hours straight and then be called to admit a patient to the hospital. And we did power through. (Thankfully, hospitals and medical schools are taking their own advice and limiting the number of hours that students and residents can work because we know that sleep deprivation leads to cognitive dysfunction.) So, I know tired. And after a good night’s sleep and some good food and rest, I was back at it again. The fatigue of chronic illness is different. Sleep doesn’t make us feel any better. More sleep actually leads to more fatigue. We are told to get more exercise, but exercise can lead to muscle pains and more fatigue for a couple of days. We have to be careful to exercise gently and pace ourselves. The fatigue of chronic illness is also qualitatively different. In med school, I would drink a Diet Coke, splash water on my face, and keep going. This morning, when the fatigue really hit, there was nothing I could do to make myself keep standing and folding grocery bags. My body was determined to rest. Chronic fatigue is a completely different symptom than just being tired.
Brain fog doesn’t always travel with fatigue, but the pattern is similar. Some days I wake up and seem OK until I need to concentrate on something. One time, I couldn’t remember the master password for our password manager, and I didn’t have it written down anywhere. It’s obvious to me, so why write it down? But, that day, I pulled on all the loose threads in my brain, but couldn’t find the right one. I love to watch Jeopardy! Nowadays, my brain is generally slower than it was ten years ago, so I miss lots of clues just because I can’t come up with the answer in time. But there are a couple of days a week when I can’t seem to come up with anything. And then, an hour later, I remember who the world leaders were at the Yalta conference. It’s crazy. And, as much as I miss practicing medicine, observing my brain playing these tricks on me is another reason that I’m better off not doing it.
I’ve had plenty of people pray for me and my chronic migraine and well as spending my own time wrestling with God. God appears to have had a different plan, though. After a couple of years of pounding on that door, I began instead to pray for strength to manage my life and illness. And God has blessed me with the ability to function at home despite my illness.
But, I still prayed for help with my fatigue, brain fog, and generalized body pain. I would pray Isaiah 40:3 “but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” I understood that the verse was not to be taken literally, but it still spoke to me. Maybe if I hoped in the Lord, he would give me the strength to “walk and not be faint.”
God has not seen fit yet to answer my prayer to get rid of the fatigue and brain fog. Yet, I can be like the Israelites still in Babylon who could say like the Prophet Jeremiah in Lamentations 3.
19 I remember my affliction and my wandering,
the bitterness and the gall.
20 I well remember them,
and my soul is downcast within me.
21 Yet this I call to mind
and therefore I have hope:
22 Because of the Lord’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The Lord is my portion;
therefore I will wait for him.”
So, yes, I have days like today when it is hard to even fold the grocery bags. I sit a lot on days like today. Today, the brain fog isn’t too bad, so I can write or read. And I remember that even in the midst of illness, God is faithful. Tomorrow is another day, and all that. (Scarlett O’Hara got one thing right!) Dinner tonight is going to be Subway because
Jesus tells us in Matthew 22:
6 “Teacher, which is the greatest commandment in the Law?”
37 Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ 38 This is the first and greatest commandment. 39 And the second is like it: ‘Love your neighbor as yourself.’
Or, as I like to sum up: “Love God and Love Others.” That’s why we were put here on earth. Chronic migraine along with its attendant symptoms of chronic fatigue and brain fog would seem to make it impossible to do that. But, it’s not. On days like today, when I’m overwhelmed by fatigue, I accept love from my husband and thank God for him. On my good days, I do “easy” things like donate money or buy extra groceries for the food bank. I’m not out starting non-profits or rescuing people from floods. That’s OK. God has called me to this “little life,” filled as it is with chronic pain and fatigue.
If you are disabled and suffer from similar symptoms, you are welcome here and you are seen! Whatever level of activity your illness you do is just fine. Many people with disabilities are doing well just to get dressed in the morning, and if that’s you, well then, bless you! You’ve done a great job! God has put us each in a place to love and be loved in whatever way we are able.
Chronic fatigue and brain fog are just two symptoms besides headache that those of us with chronic migraine deal with. I’m not writing this for pity. I’ve been doing this for 20 years, and I don’t need you to be sorry for me. But, it does help for you to understand this illness if I back out of plans last minute or if I can’t come up with words or names. And I also want other people with chronic migraine and other chronic illnesses to know that they aren’t alone. And, of course, I’m reminding us that even in our trials, we can stand on God’s promises as well as love God and love others
CCM