The condition has so many ups and downs that it is hard to keep track of what is going on, let alone create a recovery rhythm in your daily life. You will be full of doubt, and any setback can cause massive doubts in yourself, your idea about the condition, and the approach you believe to be the right one.
Lost on the internet.
Instead of switching your focus on possible other causes, like EBV and Lyme, it is key to see the commonality of the symptoms and stop searching on the web for plausible causes. To do this, you must come to terms with the fact that no one else can cure you with a magic pill. Which is a hard pill to swallow at first. If you look at it from a different perspective, you might see that the symptoms are mindbody symptoms, and because there are so many ups and downs, it is not a permanent disease that you have to live the rest of your life with.
Push and crash cycles
For many, the illness runs through the push-and-crash cycle. The more your nervous system is overstimulated, the worse the crashes can get. Although some people may perceive fatigue as just being tired, this is far from the case. A man who recovered from ME/CFS but died from aids a few years later described the sensation of a crash as far worse than his final days of battling aids. The sensation of severe fatigue from exhaustion is simply unimaginable for anyone who has never experienced it. I made a blog post about different types of fatigue that people can differentiate between.
Rest and heart rate
Normally, if you are tired, you are in need of some rest and should wait to calm down. This, however, doesn’t do the trick anymore. Focusing on the symptoms might even increase the chronically elevated heart rate. In a crash, you can have a heart rate of around 100 while doing nothing, which is very common. Although you try to rest with a heart rate like this, you are not resting at all. There are lots of things you can do to try to lower your heart rate; you will get better at it over time. A chronically stressed heart rate indicates that the nervous system remains in survival mode.
If rest doesn’t help and you can’t be active anymore, you sort of end up in a living hell. All people do is wait for the days to pass and make it through the days. Having the hope that your sleep will somewhat give you more energy (or less symptoms) the next day, which will only sometimes be the case.
You will be bored beyond your imagination, but you will feel so bad that you don’t care about being bored. This is somehow a tricky situation.
Depression, burnout, or graded exercise?
A psychologist will probably want you to start gradual exercise therapy and suspect depression. Although the condition is very depressive, depression would be the wrong diagnosis. The symptoms are also similar to a burnout. You can’t expect a burn-out treatment to work because you might call the burn-out symptoms secondary.
The negative spiral and the stress that come from dealing with a life full of symptoms and searching for answers complete the picture of a very debilitating yet invisible condition that can last for years and even decades.
Not all bad
It’s not all bad, however. People can recover from this syndrome of symptoms, and they often report being very grateful for all they have learned. You will never get your old life back; instead, something better is waiting for you. Your internal world will never be the same again. You are studying the most difficult subject in the world, yourself.
