After being officially diagnosed with chronic fatigue (CFS) in Norway, I was offered to participate in a four-week course for CFS. I think of it more as a CFS retreat, and I thought I would share a few impressions from it here.
The retreat is held at a rehabilitation center in southern Norway specializing in, among other things, chronic fatigue. The location is by a lake in a peaceful and beautiful valley. Everything was paid by the government, including transportation to and from the center. (I like that we collectively in Norway contribute to these things and decide it’s important.)
We have our own rooms (spacious, clean, quiet), four healthy and delicious meals a day, and there are several common areas. For those with food intolerances – which is most of us with CFS – they prepare special meals. They also have a quiet room for those who needed peaceful meals.
The CFS staff is professional, personable, kind, and with a very good understanding of CFS and its challenges, and what typically helps people with CFS.
The schedule is gentle. Four meals a day. A class (workshop) three times a week following breakfast. Mindfulness. Mindful movement. Some gentle activities in nature.
We can have the food delivered to our room if we feel it’s too much to do it ourselves. And we can ask to have someone change our sheets and towels.
I had special meals (without wheat or dairy). And I prioritized the classes and sometimes rested instead of participating in the mindfulness.
There will be a follow-up two-week retreat sometime next year.
When I looked into the different locations for CFS-courses in Norway, this one stood out. Past participants gave it almost exclusively positive reviews. And I have to say I am very impressed by the staff, the place, and what I have gotten out of it. I am very grateful for having been given the opportunity to be here.
I know some people experience a worsening after participating in a CFS course, although I suspect it happens less often here than other places. The staff call potential participants in advance to screen them and make sure (as well as they can) that they have a high enough capacity to participate and get something out of it without worsening. (Or, at least, not more than we can recover from relatively quickly.)
During the course, the staff strongly encourage us to pay attention to early symptoms of doing too much and stay within what we are able to do without risking crashing. We are encouraged to create a schedule for ourselves we are comfortable with. (I am on a reduced schedule.)
And whenever we say no to an event because we need to rest, we receive strong positive reinforcement for doing so. After all, learning just that is one of the reasons we are here. And by resting instead of overdoing it, we set a good example for the other participants.
WHAT I GOT OUT OF IT
For me, what I appreciated the most was to be understood – by the staff and my fellow CFS participants. So I felt normal. I didn’t have to explain. I didn’t have to worry I wouldn’t be understood. I didn’t have to worry about what they would think when I had to choose to rest instead of participating in an event or social activities.
Most of the content was familiar to me, but it was very helpful to go through it, have conversations about it, and have the importance of it reinforced.
In the long term, I hope to learn to stabilize better and avoid frequent crashes, especially since this is essential for giving my body enough rest so it can gradually heal itself.
The main emphasis is to learn and use strategies that improve our quality of life and give our body the best opportunity to gradually heal itself.
Stay within a level of activity so we avoid crashes. (Taking the elevator down to the basement.) Sometimes, we may choose to do a little more, but in general stay within a range that gives stability. This gives the body an opportunity to gradually heal instead of frequently having to use resources to recover from crashes.
Notice the early signs of needing to rest and take these seriously. If we had diabetes, we would take insulin as soon as we needed to. It’s the same for CFS. As soon as we notice we need our medicine, which is rest, then take it. Prioritize it.
Reduce stress, including in the following ways:
(a) We learned to recognize stressful thoughts and what they do to our emotions, symptoms, and behavior. And replace these with more realistic thoughts that are more kind, calms down our system, and lead to behavior that helps us rest and take care of ourselves.
(b) We found and prioritized our personal values (what’s important to us), and learned how following “shoulds” create stress while following our values calms the system.
(c) We learned basic mindfulness and noticing and allowing thoughts, emotions, and sensations, and that we are not any of those. And that fighting discomfort and reality create stress while noticing, allowing, and befriending discomfort and the reality of our situation calms our system.
(d) We explored that we are all 100% valuable independent of what we can or cannot do, and what we think and feel about how valuable we are. We all agree that babies are 100% valuable even if they can’t do much and create work for others, so when do we lose that value? It’s only in our thoughts and feelings we reduce our value, while in reality we keep our 100% value.