One of the most amazing things about the human body is its ability to adapt and overcome, especially with chronic illness. In time your brain leads you to believe that most of your symptoms become your new ‘baseline’ (as I call it), because let’s face it, it’s not really your new ‘normal’. Cognitive impairment or ‘brain fog’ as it’s more commonly known, likely has you pulling out your list of symptoms at every new doctors appointment ensuring you don’t forget your new baseline symptoms. As you nervously go through the list the doctor is likely looking at you as if you’ve seriously got to be joking. I found this ME/CFS and Fibromyalgia handy dandy symptom list and took the printed version to my last appointment (crossing out the 14 out of 144 items that didn’t apply to me). The doctor looked it over in front of me and then looking at me straight faced said, “You can’t show this to doctors. They will think you are crazy. It’s overwhelming.” To which I said, “Yes, having all those symptoms is overwhelming.” Needless to say everything else he said was a blur because I knew that he wasn’t on my team. Regardless I was thankful to have the list, because at the end of the day whether he wanted to roll up his sleeves and help isn’t something I can control, what I can control is being totally honest about my symptoms at every appointment. When you have SO many symptoms mixed with brain fog it’s hard to remember them as they become your new baseline. As a shy, introverted person it’s even harder to be honest about each and every symptom for fear that people will think you are attention seeking or one of the myriad of labels doctors have for people when they don’t have answers for them (yes you are sensing a little hostility aimed at doctors). I can’t encourage you enough to be honest at your appointments, because that’s the only way we can continue to spread the word about what this illness does to our bodies, even amongst the fog.
If I’m to be 100% honest I don’t actually like the term brain fog. In my opinion it’s like calling a lady a girl. It’s demeaning and trivializes a very frightening symptom. Although I take it in stride, laughing at my forgetfulness, and actually using the term myself, I feel like it’s not a joke, it’s scary and it’s life altering in some very negative ways. We don’t know when it will stop, nor just how much we will forget. Will our current coping mechanisms of lists everywhere we look and setting alarms and reminders for positively everything requiring such always be sufficient? I used to be sharp, intellectual abilities came very easily to me, peers used to give me a hard time because I didn’t have to study and now? Now I can’t remember the name of the thing in my hand, or that I was doing something, or that I left the water running, or what I was saying. My mind simply refuses to connect from one thought to the next, and the worse the fatigue the worse the impairment, it comes on instantly leaving me dazed, confused and searching for the next thing to say like a lost sailor searching for the lighthouse.
When my mother passed in 2002 I read a lot about grieving as the analyst in me wanted to learn how to grieve ‘properly’. I was terrified as my mind numbed. But I learned that that was simply my body’s way of protecting my heart through this awful experience. I also learned that you can learn all about grief, but that knowledge isn’t going to make your mind sharp again. I would often drive past my destinations, or just feel lost in space. But in time it did all come back to me, for about 12 years. And then one day I awoke and my mind felt like it was grieving again, but what? Did it know before I did what I was about to lose? What was it protecting me from, and if in fact it’s protecting to me, what is it still protecting me from?
Considering that scientist are still trying to figure out cognitive impairment I cannot pretend to understand the symptoms that come along with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis and Fibromyalgia. But I did find this article that explains that researchers found clues in the spinal fluid of CFS patients and confirmed that this symptom is not ‘made up’. We knew that though. We know everyone forgets things. We were normal once too. We remember locking ourselves out of the car or forgetting what we were going to say, and it is because of that that we also know this is very different. It’s a complete lack of remembering things. Like asking someone how their day was, several times, repeatedly because you have no memory of having just done so, nor their response. It’s people looking at you like you are lesser because you struggle for words, for memory recall. It’s being talked down to because you simply do not have the energy to correct people or stick up for yourself. It’s distancing yourself from people because you don’t want to look stupid when you can’t keep up with the conversation or you don’t want to be embarrassed by what you say. It’s being lost in a fog, like driving down the road on a foggy night with zero visibility, never knowing if the fog will clear. For me it’s not being able to work, nor drive because my mind doesn’t keep up with the speed of the car and necessary reaction time. Some days are better than others, when I’m more fatigued my brain is simply mush.
I’ll close by saying please take your lists to doctors appointments and be honest folks, about every single symptom. If we don’t tell them, they will never know. And when they give you a hard time stand tall because you are standing up to a bully. Be proud of yourself for taking good care of you when it’s highly likely you were terrified to come to the appointment at all, but you did. You are a rock star! And keep making those lists of to-dos, calendar everything, and use that timer every single time you are using the stove or toaster. The microwave is ahead of us on this one! 🙂 Most importantly be kind to yourself, you are doing the very best you can.
Thank you for reading along! Feel free to comment on your experiences with brain impairment, how you handle your symptoms lists at the doctor or just any old thing you feel like talking about. 🙂
Here’s a little painting from this last week, because painting makes me happy and I like to share that happiness with YOU.