I’ve been unable to work due to fatigue syndrome off and on since 2005. Now, after 10 years of struggling, I think I’ve finally found a way to live that will enable me to never go back there again. These are a few of the important things I’ve learned on the way:

  1. Fatigue syndrome is my body and souls way of preventing me from working myself to death. It’s a protection and a gift, not a failure.
  2. Fatigue syndrome is a chronial disease. I’ll never be able to live the way I used to. Living that life is what gave me fatigue syndrome in the first place.
  3. If I look after myself I can be free of symptoms and live a good life. I need to take care of myself first before I can do things for other people. I need to make sure I get enough sleep, rest, exercise, nutrition first, before I make plans for all the other things I want to do.
  4. Time spent on rest, sleep, exercise isn’t wasted time – it’s invested time. Valuable time that gives me the foundation to do all the rest (and not something I can do if I ever get time to spare).
  5. Among the first things I loose when I get stressed is the ability to realize what’s happening. Therefore I need help from people around me to make me aware of what’s going on.
  6. When I get stressed my symptoms reappear. I start loosing focus, sleeping becomes a struggle and my skin aches. That doesn’t mean that I’ll be forced to stay away from work for a long time again, there is no need to add that fear to my stress. The symptoms are my body’s way of telling me that I’m on the wrong track. If I take notice, and give myself what I need, the symptoms will dissappear.
  7. Even the things I love drains my energy levels. To be social is very draining. Even if being with the right people also gives energy, I need time to recharge afterwards.
  8. I need to plan for rest. When I’m feeling good I easily forget to rest. To alternate between rest and activities is the best way, and I need to rest about twice as often as I think I do – but if I rest often enough, the pauses do not need to be very long.
  9. There is nothing lacking in me when I can’t get well in the environment that made me ill. Not every workplace can be adapted to my needs, and I can’t function in all kinds of working environment, no matter how much I love the work. Better to find another job than to get ill over and over again.
  10. Life cannot be controlled. I can make plans, create routines, follow my rhythm and do everything I can to stay well – but things will happen that are not in my power to control. When they do I need to go back to the basics, not try to do anything that’s not strictly necessary, remember to breathe and weather the storm.  It will pass.

It’s been almost 3 years now since I last had to stop working due to fatigue syndrome. I work part-time, at another job then the one I had when I first got ill. I’ve had a few relapses without having to stay home from work, but each time has been less severe then the last. I challenge my limits every now and then, and I can handle a bit more now than could a few years back. But my goal isn’t to make achievements – my goal is to feel good. I’m feeling better now than I did a year ago, and I’m hoping that I’ll be able to say the same thing a year from now!