The condition has so many ups and downs that it is hard to keep track of what is going on, let alone creating 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. By doing so, you will have to realise that nobody else will be able to fix you via 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 Bodymind related and because there are so many ups and downs, it is a not a permanent disease that you have to live the rest of your life with.
Push and crash cycle
For many the illness runs through the push and crash cycle. The further your nervous system is over-stimulated, the worse the crashes can get. Although other people might see the fatigue as just being tired, this is far from being 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 the severe fatigue of 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.
Rest and heart-rate
Normally if you are tired, you are in need of some rest and wait to calm down, this however doesn’t do the trick anymore. Focussing on the symptoms might even increase the chronically elevated heart-rate. Very often in a crash you can have a heart-rate around 100 while you do nothing. 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 the heart-rate, you will get better in it over time. Having a chronically stressed heart-rate is a signal that the nervous system is stuck 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 to 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 imagination, but feel so bad that you don’t care about being bored. This is somehow a tricky situation.
Depression, burn-out, graded exercise?
A psychologist will probably want you to start gradual exercise therapy and suspects a depression. Although the condition is very depressive, a depression would be the wrong diagnosis. The symptoms are also similar to a burn-out, because the original symptoms can cause you to have a burn-out. You can’t expect a burn-out treatment to work, because you might call the burn-out symptoms secondary. For someone with ME/CFS the whole nervous system is out of whack. After many years, people don’t notice the flu-like sensations in the head anymore.
The negative spiral and the stress that comes from dealing with a life full of symptoms and searching for answers, completes 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, they often report to be 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 of the world, yourself.