What it feels like (for me) to have chronic fatigue syndrome

It’s hard to explain just how exhausting it is to have chronic fatigue syndrome.  It’s taken me years to really and truly understand that rest doesn’t cure this type of exhaustion.  It is much deeper than a lack of rest.  It is an exhaustion down to the cellular and soul levels. 

Before I get much further in my writing, I’d like to acknowledge that this represents my experience and no one else’s. I know others who have chronic fatigue syndrome and there are some similarities between us, but important differences too.  There are some people who don’t have even a tiny fraction of the limited energy that I do, which I can fathom from my worst days, weeks and months, but can’t truly understand 💖.  I hope that my words find those who need to read them and that each person with chronic fatigue be surrounded and filled with so much help, support, compassion, healing and love from inside and out.

For me, chronic fatigue is like living at the speed that a turtle or snail needs to go at, not fast, but just slow and steady.  Sloths are also super cute and make me feel better about the pace I need to do things at. 

Another analogy for chronic fatigue is when a computer runs in energy saving mode, the screen is a bit darker, things move slower, all in an effort to conserve. And it stays in that mode, because the charger can only replenish the computer battery so much for some reason. That’s probably the closest comparison. Physical and cognitive tasks really drain my battery, and experiencing big emotions do too, so I’m often working to maintain some sliver of balance or to regain balance whenever I can. 

There have been days/weeks/months where I needed to lie down so I could breathe deeply enough or so that I would have enough energy to digest my food.  Some days I can run errands, and it takes a toll on me, but accomplishing something and getting to smile at people is so worth it.  Other days, I avoid the grocery store where I have to pack my own bags because it’s too tiring for me to do it.  

Some days, I can sit up for quite a few hours, but I need to find ways to recline, lean back, rest my head or lie flat.  If I don’t, I start to feel weak, light headed, dizzy, anxious and overwhelmed.  If I use my muscles too much, like with gardening, or household chores, then I feel weak and vulnerable for 2-3 days afterwards.  I can do gentle exercise for 10 minutes or less, depending on the day, and I can dance!  As long as it’s only one or two songs where I really have a kick ass party!  Then I tone it down and just enjoy myself instead of full on dancing because it’s too tiring.

Sometimes the thought of cooking a meal for myself or my family is too tiring and I need to lie down and ask for help.  That is definitely something I have struggled with, but I am slowly getting better at doing this!  I am a (recovering) people pleaser, perfectionist and high achiever, so admitting where I am with my health has been hard for me.  I continued to work way past the time it was healthy for me to do so, and that’s all been part of my journey towards being kind to myself, acknowledging my reality and learning how to meet my needs instead of force, belittle or coerce myself. 

Today, I was walking with the dogs, which is so good for my overall health, but I had to cut it much shorter because I could feel the exhaustion in my muscles.  The dogs weren’t happy about it, but I’m learning with each experience to trust myself to meet my needs and to stay within my capacity.  I learned recently that overexerting myself actually slows any potential healing from chronic fatigue syndrome.  How about that!  I had been pushing myself way past my capacity for years. 

Every once in a while, I have to stay in bed for a few hours, half the day or just make sure I lie down around the house for the majority of the day.  Today is definitely an exhausted, take it easy kind of day, which I’m getting better at relaxing into.  Oddly enough, I feel worse if I lie down the whole day.  Doing a small chore, gentle dancing or lymphatic massage makes a big difference to the quality of my exhausted days and creates more flow inside of me.

I thought it might be helpful for me to write more about what it feels like for me to have chronic fatigue.  I also thought it might help anyone who is wanting to learn more about it too.  Writing about my experience of life gives it validity and importance, and that is really special for me.  After so many years of being so hard on myself, it feels good to ease into who I am, all of me, regardless of where I am with my health.  It reminds me that I am okay despite my health challenges and that I am very worthy regardless.

If you’re like me and you’ve been shamed for having a sensitive body and soul, then I send you big care and lots of hugs.  It’s totally okay to be sensitive and to have lived through some really tough things.  I am learning how to care for myself instead of continuing that shame.  May you be super supported by friends, family (chosen or blood), health care professionals, mental health professionals and anyone else who can shine a light on your awesomeness and help you in the ways that you need.  And most importantly, may you learn what your needs are and may you feel empowered to take big or small or baby steps to start meeting them.  That is how we’ll truly earn our own PhDs in Being Me, each of us learning more and more about who we are, what we need and learning to do that for our sweetie selves.

I send you lots of care and smiles.  Thanks for reading and may you be well 💖🌟❤️,

Bradlee

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