There is a lot happening in my life these days, including some situations where I feel squeezed, so I need to take extra care of my health. (I have CFS.)
That’s also why I am not writing here very often. I don’t have the clarity of mind or the energy. And even if I did, I would need (chose) to preserve my energy for other things.
Having lived with CFS for a while now (decades), I am somewhat familiar with how it impacts my cognitive functions, and how I am able to process information and communicate.
CONVERSATIONS
In daily life situations, and on a good day with a lot of previous rest, I can talk and seem relatively normal for a few minutes. That is, if the topics are simple and familiar to me, and if I don’t feel under pressure. After some minutes, even simple conversations become challenging.
If I don’t have a good day, or the conversation goes for more than a few minutes, the topics are more complex, and/or I feel under pressure, then verbal communication is much more challenging. I have trouble taking in and processing information, and it can be very difficult to formulate anything coherent.
I have trouble remembering, finding and stringing together words, and organizing information. (It’s also very difficult for me to make good decisions, even about simple things.)
READING
I can read if the text is short, simple, on a topic I already am familiar with, and I don’t need to process much. As a kid, I was a bookworm and read far beyond my age. In my mid-teens, I loved books on science, systems theories, quantum physics, history and methods of science, and so on. That’s also when I got into Jung, Taoism, art history, philosophy, and much more. After the CFS got much stronger, some years ago, I have been unable to read much. I can skim through the occasional simple news story. (Even that’s challenging and not something I do most days.) I am unable to process or take in longer or more complex texts.
WRITING
Writing is sometimes easier than talking. I can see what’s already on the page (or screen), which helps me remember the topic and what’s next, and I can take time and take breaks and get back to it. That helps me express something more clearly and coherently.
When I write here, I usually write on topics very familiar to me, that’s here in immediate noticing, I seek to use a simple language, and I often write in a flow. (I do something look over and edit parts of the text, although only small sections at a time with rest in between. Often, I forget essential things that I later remember and add in.)
That’s on good days. On a bad day, and when my brain fog is extra strong, as it currently is, writing becomes far more challenging. If I write, the style tends to become more telegraphic.
HOW OTHERS PERCEIVE IT
This is my side of the experience. It’s interesting to notice, or imagine, how others perceive it.
On a good day, and in brief conversations where I feel comfortable, I probably seem reasonably normal and possibly even intelligent. (Especially if the person didn’t know me when my health was better.)
On a bad day, I likely seem quite disabled (which I am). If someone only sees me on a bad day, they can be forgiven to think that my poor cognitive functioning – poor memory, poor ability to process information, poor ability to find and string together words, and so on – means I am a little, or a lot, retarded.
In reality, those are all distinct abilities. You can be highly intelligent (or not) and still have bad memory, or be unable to find words, or be unable to process information.
Also, my general condition fluctuates. It depends on the week, day, the time of day, the moment, and the situation. Sometimes, I can do more and function OK for a while, other times, not so much. It’s completely unpredictable.
STRATEGIES TO APPEAR NORMAL
Another side of this is the circumstances in which people see me.
If you see me, it’s likely on a good day and I have rested a lot in advance. If it’s not a good day, you won’t see me.
You likely see me for short periods of time. I make sure any social engagements are brief, unless on rare occasions when I know I can lie down somewhere in silence and rest.
You see the result of a range of strategies I use to appear more normal. I write down everything I need to remember, otherwise I’ll forget most of it. I set alarms for the same reason. I intentionally talk about simple topics. I allow others to talk while I listen to conserve energy. If there are three or more of us, I let the others talk. If there is a group, I tend to disconnect from following the content of the conversation as I get more tired. I have learned to take “hidden” or invisible breaks.
For these reasons, people may think I function better than I actually do. Very few people have seen me through the day, and on the worst days. (If they do, they are often shocked.)
THE MANY CHALLENGES OF LIVING WITH CFS
There are many challenges in living with CFS.
The immediate symptoms and impairments, on their own, make life very difficult to live. Life becomes very reduced. A lot falls away, including most dreams and plans. (In many cases, life becomes close to impossible without extensive support and help from others.)
There is no treatment or cure. There is some research, although not nearly enough considering the number of people worldwide living with this condition, so a treatment may come but it’s not on the horizon yet.
It’s a poorly understood and often misunderstood disease. People have misconceptions, unless they have taken time to learn about it.
An additional cruelty is that others easily get a wrong impression for a combination of reasons. It’s an “invisible” disability. They may not know much about it. With a lot of previous rest, we may be able to function reasonably normally for brief periods. (For me, usually 5-10 minutes). People don’t see us if we haven’t rested a lot and happen to have a good day. And we have learned strategies to appear more normal.