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.
GENERAL INSIGHTS & GUIDELINES
The flight/fight/freeze (FFF) response normally activates as needed and then turns itself off, allowing the body to relax and recover.
For people with CFS, it seems that the FFF response is typically chronically engaged. This can explain or contribute to many of the typical CFS symptoms: Digestive problems, cognitive problems, sleep problems, hypersensitivity to stimuli (light, sound, movement), increased and irregular heart-rate, temperature dysregulation. The body is in an emergency mode so it’s alert (hypersensitive) while digestion, higher cognition, and sleep all are given low priority.
Why do we see this FFF engagement? Nobody knows, but it is possible that the body responds to an initial infection (often mononucleosis) by triggering a chronic FFF response and the body is unable to switch it off as it normally does.
It’s helpful for me to see that most or all of my symptoms can be explained by an over-active FFF response. It helps me make sense of an often bewildering array of symptoms. Also, it gives us some pointers for (a) continued research and exploration of treatments, and (b) what we can do right now as individuals. In essence, anything that helps our system to relax tends to reduce the symptoms and gives our body a better chance to recover.
When asked to do something, and it may be too much, prepare some answers:
(a) To give ourselves time to consider it and give an authentic answer: “Thank you! I’ll give you an answer later”.
(b) If we don’t want to explain: “Thank you! I can’t since I already have an appointment then”. (With myself, to rest.)
(c) If we want to see how we feel when the time comes: “I would really like to do it. Is it OK if I give you an answer on short notice?”.
My energy is like money. Do I spend it as soon as I get it? Or do I save it? Invest it? Saving it gives the body resources to heal itself. Investing it in certain things – like mindfulness – does the same.
PERSONAL INSIGHTS & GUIDELINES
These are all things we explored in the course, either in groups or individual conversations with our contact person. (In my case, it was Berit who is amazing.)
I want to be more conscious of the warning signs of being about to do too much. One warning sign for me is wanting to please others. (Saying yes when my body says no.) Another is to feel elated (adrenalin rush) and surf on that energy do more. Both often lead to crashing.
One way I get into the rush is to eat sugar. If I know I’ll need to do something, and my body doesn’t have the energy, I’ll sometimes eat sugar (fruit, cocoa, chocolate) to boost my energy just enough to do it. And sometimes, it comes with an elation that makes me do too much and then crash. (Even if it’s just a small crash I can recover from within a day or two.)
There are also early signs of doing too much, the early signs of crashing: Feeling drained. Pins and needles in arms and legs. Dizziness. Unable to find words. Foggy thinking. Wanting to lie down and rest more than anything else. Sugar craving. Headaches. Nausea.
Many or most of these are intensified forms of my usual symptoms.
There are also the early signs of needing to eat. In general, I need frequent and small meals. If I wait too long, I tend to crash and my CFS-symptoms get much worse. If I wait too long, high-sugar foods like chocolate or sodas (which I otherwise don’t drink) become my medicine. But it’s much better to eat frequent and smaller meals and avoid needing this “medicine”.
My regular food is vegetables, fruit, some meat and fish, and some nuts and grains (quinoa etc). I tend to avoid dairy and wheat, and not very much sugar. (Although I do get sugar cravings if I don’t eat frequently enough.) I drink a lot of water, mostly in the form of herbal and spice teas.
I want to do more planned rest. I already rest extra when I know I am going to do something the next day, or even the next week or month. (Before going to the CFS retreat, I rested intentionally for a month.) And I want to continue with this resting in preparation for activity.
What I want to pay extra attention to is healing rest. Not just resting to recover from activity. Or resting so I am able to do an upcoming activity. But resting to HEAL. This is additional resting on top of the recovery-from-activity and preparation-for-activity resting. Paying more attention to this feels like an important next step for me.
This means resting when I feel I could do something (even if it’s something small like writing here).
So there are three forms of resting. There is resting to (a) recover from an activity (often don’t have a choice). There is resting to (b) prepare for an upcoming activity. And there is (c) resting to allow my body to heal.
With the resting to recover from an activity, there is often not much choice. I have to do it. My body doesn’t allow much or anything else.
I am pretty good at resting to prepare for an activity. I have learned enough, through experience, to know it’s often the only way I’ll be able to do it. It’s mostly a visceral knowing for me.
And I want to pay more attention to the healing rest, the resting that may give my body enough energy to start healing and actually recovering.
I think of this as the before, after, and extra resting. The after resting mostly takes care of itself. The before is relatively ingrained by now. And the extra resting is the one I want to pay more attention to.
I am 100% valuable just by being a alive and a human being in the world. We all see babies as 100% valuable even if they don’t do much and require a lot of help and work from others. When do we lose that value? We only lose our value in our thoughts and feelings. And we are 100% valuable independent of what we think or feel about it. Thinking and feeling we are not takes energy and creates stress. Aligning with reality, that we are 100% valuable, calms the body.
Use the body as a guide. When something is true and aligned with our values, the body relaxes. When something is not true for us or not aligned with our values, the body is tense.
Use can and want. Shoulds typically come from others and when I follow shoulds, my body gets tense and stressed. If I instead use can and want, check how my body responds, and follows that, my body relaxes.
For instance, “I should stay in this class because it’s good for me and it’s why I am here” creates tension in my body. There is an inner fight that takes resources and energy.
When I instead say “I can stay if I want” the body immediately relaxes. And I can check with my body. I can say “I can stay if I want, and I want to” and see how my body responds. And I can say “I can stay if I want, and I don’t want to” and see how my body responds. Which one feels better in my body? Which one allows my body to relax more? It’s often very clear.
And the more we explore it, the more it becomes second nature and the more the answers become clear.
(In the example I gave, I can also say “I can go to my room if I want to, and I want to” and “I can go to my room if I want to, and I don’t want to”.)
When we have CFS, we often learn to lie. We follow our shoulds more than our can and wants. We become liers. And our bodies suffer from it.
When I am more honest with myself and others. When I follow my cans and wants. When I check in with my body. Then it allows my body to rest and find peace. It allows my body to find ease.
For instance, someone asks me to do something. I can think I should do it, and that in itself creates stress if it’s not honest for me. If I actually do it, that creates more stress because it may be more than I feel I can do without crashing.
If I instead tell myself “I can do it if I want”. Check “I can do it if I want, and I want to do it” and “I can do it if I want, and I don’t want to do it” with my body. And follow what relaxes my body and allows it to rest and breathe. Then I am honest with myself and the other person. I take care of myself. And I allow my body a chance to use its resources to heal and recover.
I went through a simple exercise where I found and prioritized my values. What is most important to me? I could come up with my own, or pick some from a sheet with about thirty or forty possibilities. We wrote down the ten most important ones on pieces of paper. These were the ones that resonated with me and gave a peaceful feeling in my body. We then went through two at a time and found the most important one of the two until we were left with the three most important ones.
For me, they were love, honesty, and peace (“ro” in Norwegian which means peace, calm, relaxation). Each of these feels very good in my body and I there was a deep calm when I looked at them.
In the process, I realized that my values now are different from what they used to be. For instance, now rest and calm is important and something I value highly in my daily life since I need it to restore and function. When I had more energy, it had lower priority although it was still important and something I valued.
We also explored how the values feed into each other. For instance, when I am honest with myself and those close to me, it gives me inner peace. And it can also give me outer peace since I may be able to take better care of myself. When I find love for myself as I am, and for what I experience now, it allows my body to relax and rest. When I find genuine love for others in my life and the world, it also relaxes my body.
I was also reminded that love and honesty in Norwegian are almost the same word. Love is kjærlighet. And honesty is ærlighet. In Norwegian, honesty is literally a part of love. Ærlighet er en del av kjærlighet.
And I am again reminded of the value of following my body. I can be honest in a harsh and unkind way, and my body responds with tightness. I can also be honest in a kind and caring way, and my body responds with relaxation. My body shows the way. It is very beautiful.
Fatigued vs sleepy (vs. exhausted). There is a difference between fatigued and sleepy. When I am fatigued, I need rest. When I am sleepy, I need sleep. It’s not new to me but a good reminder.
With CFS, there is always a baseline level of fatigue. When this gets worse and/or combined with lack of sleep (which is common in bad CFS periods), it creates exhaustion.
CFS & stimulants. I sometimes use stimulants when I want more energy or to get a bit out of a fatigue-hole. Usually, it’s chocolate or sugar (coca-cola in a crisis). This is OK, although I don’t want to do it too much, and I want to be conscious of when, how, and why I do it. I especially want to avoid doing too much because I have some extra energy from artificially pulling myself out of a fatigue-hole through stimulants. I want to stay within my tolerance window and avoid a crash.
Goals & plans. The main goal: Improved daily life. Subgoals: (a) More extra rest. (b) Avoid big swings and crashes. (c) Recognize and take the signals of the body seriously, especially the early signs of doing too much. (d) I can do this if I want. Check with the body. Follow the body and the values reflected in the body’s response. (e) Improved communication with those close to me. (e) Give my body a better chance to restore and recover, by doing all of these.
[To be continued]
- four-week retreat in southern norway
- all paid for, including transportation – adapted to level of function
- excellent food, adapted to food intolerances etc.
- default setup, and can get help w additional things as needed (change bed, food to the room, etc.)
- beautiful setting
- excellent staff
- what get out of it
- feeling normal, understood, by staff/participants, shared understanding
- reinforce what already know, learn more about why it’s important, mechanisms etc.
- learn how to better stabilize over time + gradually improve (give the body a chance to recover)
- main emphasis
- stay within the window of activity where can avoid crashes, and from there – when more stable – can gradually begin to improve
- encouraged to notice the early signs, take it seriously
- fff & cfs, simple cognitive therapy to improve quality of life, recognize and minimize energy thieves,
- in the program, notice early signs, rest instead of following whatever parts of the program feel too much – strongly encouraged to do so, positive reinforcement
- specific strategies / insights
- can say “I have an appointment then” – with myself, to rest (if don’t want to explain)