This perfectly captures how it feels to live with Chronic Fatigue Syndrome (CFS).
I may look fine or OK to others. I am often able to mobilize for short periods and appear relatively normal. And my experience of myself is very different.
HOW IS IT TO LIVE WITH CFS?
How does it feel? It’s almost impossible to describe, but here are some attempts:
It feels like having severe influenza minus the congestion and fever. It’s equally difficult to think and get up from bed and do things.
I have strong brain fog: It feels like cotton in and around my head. It’s difficult to remember things. It’s difficult to make good decisions. (Sometimes, it’s difficult to make even the simplest decisions.) It’s difficult to take in information. It’s difficult to stay focused for more than five or ten minutes. (I typically have to watch movies in short segments over several days.) It’s difficult to string together words. (which is why these writings are short, choppy, and feel like a list of points.) It’s often difficult to find words. In bad periods, it’s difficult to relate to life and what comes up in the way I do when I have more energy. In short, the executive functions are impaired and it gets worse the worse the CFS is.
I get worse after just about any activity, and sometimes a lot worse. Any type of “explosive” activity (walking fast, heavy lifting, etc.) is just about impossible since it causes a severe crash. And any type of activity at all worsens the symptoms and requires a period of recovery. Simple and essential daily life activities are often all I can do. And, in periods, even that’s very difficult.
I have to schedule extra rest before, during, and after any planned activity. If I am meeting someone, or if I have an appointment of any type, I typically have to rest for days before and after. I have learned to do things slowly.
It takes a long time to recover from infections and other illnesses.
In short, my system lacks resources. It lacks the resources to do things. To have conversations. To take in information. To process. To think. To consciously and intentionally relate to life and what’s coming up in me. To recover after other illnesses. And so on.
At an energetic level, I and others have found a pattern: My system seems very disorganized when I have a crash. That’s perhaps not surprising. It takes energy to keep a mind-body system organized. When it’s energized (using Vortex Healing), my system again becomes more organized.
SOCIAL, MEDICAL & POLITICAL ASPECTS
This is challenging enough in itself. On top of this are the social, medical, and political aspects.
Most people don’t understand it very well and may assume it’s just mild tiredness. They typically see me when I am able to mobilize for a few hours, or in the better periods, and they don’t see what’s happening the rest of the time. Some get upset that I have to cancel appointments, and don’t realize how much effort I put into trying to make it happen. Or they think that my long periods of not staying in touch mean I don’t value the connection.
CFS is a kind of “pariah” illness. It’s poorly understood. There isn’t much research. Politicians and policymakers don’t take it very seriously. Many doctors don’t know much about it. There is no mainstream medical treatment. (In Norway, the largest newspaper – Dagbladet – seems to have a campaign to show that CFS is just a matter of “pulling yourself together”.)
This will very likely change. I am sure they will understand the mechanisms better. (The trigger seems to often be a combination of physical and/or psychological stress, often involving a viral infection.) They may even find an effective treatment or cure. If or when that happens, CFS will be included among the acknowledged and understood diseases. (There will still be diseases in the pariah category going through a similar process.)
HOW I HAVE EXPLORED IT
I have lived with this since my teens, and I have tried a wide range of approaches.
I have found a diet that works for me. (Eating low on the food chain. Reduce or avoid sugar, wheat, and dairy. Drink lots of water / herbal teas. Have bone broth daily. And so on.)
I have found that sun and moderate to warm climate work well for me. (Cold weather impacts my system strongly, as does very hot weather. Both place an extra demand on the very limited resources of my system.)
I have learned to rest before, during, and after activities. I have learned to portion out tasks over time and move slowly.
I have used a wide range of herbal medicines. For instance, a combination of Siberian ginseng (eleuthero) and echinacea seems to work well. (I fill my own capsules and have around five large ones daily. Siberian ginseng gives energy and echinacea helps my immune system. I have used this for long periods, and am now taking a break.)
I discovered that hyperthermia treatment seemed to help me greatly for several months. (I would like to try it again but it’s expensive and I need to travel quite a distance for it.)
I have tried a wide range of alternative treatments. What seems to work the best is Five Element Acupuncture. (Helps for a day or a few days.) Breema. (Gives an amazing sense of health and wholeness beyond the struggles of this human self). And Vortex Healing. (Energization and removing pathogens.)
And I have also found different forms of inquiry to be very helpful. (The Work of Byron Katie, Kiloby inquiry, Headless experiments, Big Mind process, and so on.)
UPSIDES
There are also upsides. It has been an invitation for exploration and transformation. It’s an invitation to find my value independent of my resume or activities in the world. To be more authentic and transparent. To find value in rest. To find the gift in asking for and receiving help. And so on.
In many ways, CFS is an invitation to examine and see through many of the assumptions in our society and find what’s more true for us.
It can bring a correction to some of the lopsidedness of our current civilization. (Including valuing people according to their resume or activities, valuing doing over resting, and so on.)