When you have a chronic illness, wellness means something altogether different than when you live with health. A chronic illness doesn’t go away, especially one where medical research is underfunded and there are no effective treatments. However, I have learned how to be well most of the time with ME/CFS. I don’t always succeed, and there are things out of my control that can take that wellness away, but generally there is a marked difference between when I feel well and when the illness rears its ugly head in full.
Sounds wonderful doesn’t it, but here’s the catch. Feeling well doesn’t mean any more ability to function. In fact, the no.1 key to feeling well with ME/CFS is to get used to using less energy than you have, even though your energy is already so limited that you can do very little. For me that presently means being able to function for about 7 hours a day. The other 9 hours a day that I’m not sleeping I am resting. If you’re think, “wow, I could do a lot in 7 hours”, then think again. In order to keep my state of wellness, I have to do things slowly, one at a time, in short, relaxed bites with minimal stimulation. No multitasking or music. Most of that 7-hours is taken up with self-care of some sort or another, including the basics like personal hygiene and eating.
I’ve realized that I’m making this sound pretty grim when my intention is to write an inspirational article. So, here’s the inspirational bit. Those 7 hours of wellness a day can bring me a whole load of joy and love. In fact, a really big part of wellness is how you feel emotionally, not just how you feel physically.
What exactly do I mean by feeling well?
What I mean is that for the majority of my day, I can think clearly, am relatively free from pain, my limbs don’t feel heavy, I don’t feel as though I am being dragged down by fatigue or walking through syrup. There is a relative lightness in my body, and I feel loving, joyful and appreciative. Life feels good and I can enjoy the moment. I say the majority of my day, because I never wake up feeling like this. It takes a careful morning routine to get there, and if I get carried away and push my limits, I can lose it very easily.
What does it take to feel well?
There is no simple answer to this, I’ve written about 400 blog posts and articles detailing all the strategies and skills involved. Recently though, I haven’t had the energy for many of my strategies and I’ve had to cut right back to basics. I can summarize my success with these 5 keys:
- Staying consistently well within my energy envelope
- Staying relaxed and stress free, never pushing or striving
- Acceptance and surrendering to being at peace with what is
- Being present to the little joys of the moment and holding an attitude of appreciation
- Being kind to myself
The other great thing about wellness is that it also a state of hope. I have lots of experience of times when I have been able to hold onto wellness consistently and my energy has gradually improved. Being at peace with what it is, means that my hope also carries with it a hefty dose of detachment.
Wellness isn’t always possible
There are many other symptoms that can get in the way of wellness even if you become skilled at all the above, sometimes we have to tackle different issues like food intolerances or nutritional shortfalls before it even becomes a possibility. For many years, even if I was as well as I could be, I still dealt with pains in my muscles. Now, I have the challenge of allergy related headaches about 6 months of the year. Wellness when pain is in the mix, involves being able to let go of my resistance to the pain and allowing it to share my space, without it having to be the focus of my attention. It’s really not the same as when I’m completely pain free, but I can enjoy the moment.
There are also the things beyond our control that can snatch away our wellness altogether like exposure to viruses or unexpected stressful events. When we crash our brain chemistry is affected, our dopamine levels dip, which affects our motivation and our ability to experience joy.
Wellness with ME/CFS, just isn’t always possible, so please don’t let yourself think that you are failing in any way when it’s out of your reach. When that happens, please push being kind to yourself to the absolute top of your list!
If you’d like support working on any of these wellness skills, I am currently adding a variety of coaching mini-courses to my website. I also run a membership programme called ‘Embrace, Replenish, Thrive’ where you get access to a new mini-course each month. I’d love to welcome you into our community x