If only… 😓😥 Fatigue is relentless. I have had to learn to scale back my expectations to better reflect what energy I actually have on any given day. “Resting up” doesn’t seem to have any real impact anymore. I’m good for 2-3 hrs out and about before I “hit the wall” and need to retreat to recharge. Wishing you all the best.

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We hear from people that we “just have to live with it” or “make the best of it” and while that message is borderline gaslighting, there is some merit to the idea of reframing the goal of “doing all the things I want to do”. Sometimes our bodies don’t cooperate with that, and it can be valuable to pause and evaluate what is most important. Our fatigue is exacerbated by strenuous activity, and fighting fatigue is a strenuous activity. Focus on energizing and nourishing things. Nature? Positive relationships? Your art? Try to cultivate those and trim out unnecessary stresses. That’s my advice 🤷‍♀️

Yes I’d say pick your to die for favs that are not just thrilling and fun- but actually fulfill you and speak to your soul. Then I’d set out a small increment of time to do it everyday (or 5 days out the week whatever works for you, but I aim high so that if I must miss a day or a few I’ve still got a bunch of other days left and I don’t feel so bad about it in the grand scheme of a week or month) so for ex, if I love to dance I’d set a 5-10 minute timer to do my favorite move or light routine every day so my brain can keep my identity as a dancer. Over time one can adjust, add or subtract, and find their limit and healthy routine.I still struggle with the feeling of “loss” of my identity or life before I fell Ill. What allows me to cope is knowing that my body is just trying to protect me, I need special care because my body is special, and sometimes I have to slow down so I won’t shut down and can get back up and at em in no time.

We are pioneering a way of life that no one person has figured out how to cure or adequately treat. We have not disappeared, we are not watching “normal” life from the sidelines while we only get to suffer as it can so often seem or feel- We are just defining a NEW normal! That new normal CAN be beautiful. Remember it takes time, so be patient with yourself, and limit outside noise from those around you. Stress is a waste of our precious time & energy too, and any one of those people wouldn’t know the half of what it takes to be you! Easier said than done of course, but I’m proud of your resilience and I hope something I’ve said helps💝💝💝 happy healing!

My experience with chronic fatigue is that you can't fight it. I have to listen to my body. When the fatigue gets so bad I rest. I also watch my attitude. If I let my attitude get bad everything gets worse. Attitude is key. Sometimes you just have to accept things in life and work around it.