May 12th is Awareness Day for Fibromyalgia and ME/CFS. I dedicate this to each of you brave ones, living and surviving such overwhelming illness. You're truly heroes – courageous beyond description.
Each of us with Fibromyalgia or ME/CFS/SEID understands how it feels to live one day after the other with chronic illness.
It seems like we're trapped in a loop with the same day repeating over and over.
It's like a dripping faucet, which requires constant maintenance, yet it falls short. It may drip less, but it doesn't stop completely.
So is our illness. There are days that we need less maintenance and can do much better. There are other days in which maintenance is continual. We don't feel better, no matter what approach we take. All we manage to do is slow the drip and maintain as best we can.
Living this way takes courage. I commend you on striving to find new ways to heal, new things that may help you live a better life. This isn't an easy task, yet you do it with such 'glorious grace.'
We must rethink what productive means. We've been programmed to think that it's staying busy and keeping up with everything around us. Illness changes our perspective on what productive now means.
Learning to do things in a simpler way, doesn't mean you've failed. It means you're adapting to your new way of life. It doesn't mean you've given in or you've given up – only that you're readjusting.
Its so important that you forgive yourself for something that's not of your making. Allow yourself to grieve the many losses, whenever they come up. If you don't let them go, they come back next time with reinforcements.
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Imagine, as you let go of the pain, that it's burned into ashes. Then blow them away, as the wounds of your past, in order to find your way to the future.
Our future may not be as active as our past, yet it still can be meaningful. Living with chronic illness can allow us to make new discoveries about who we are and new things we like to do – which don't consume our very precious energy. It may be drawing, writing, doing a simple type of crafting, etc. It may be making a couple of calls to someone else, who's in need or ill. Many times, as we fill others up with kind gestures or a kind word, we too are filled. Use this new you to discover your hidden talents.
Know that you're strong, even when you don't feel you are. Know that you're courageous, even when you don't feel you are. Know that you're loved, even when you don't feel you are. Most importantly, know you're worthy of finding ways to be happy, even if you don't feel you are.
Your many battle scars, show where you've been – yet they need not determine where you're going. Illness may be a thief of dreams – yet it need not be allowed to steal your thunder.
Walk in that light that shines from your heart and soul. You're fearless beyond measure. Living with chronic illness, each moment of every day, is proof of your strength.
Take hold of this truth. Carry it with you, as you go about your day. Say to yourself, "I am worthy of the best that life has to offer. I'm cared for and there is more to me than illness. It's not who I am, only where I am."
It's this continual desire to move forward, to stop the daily grind and repair the drips, that make you so special. You're a hero of a unique type. Most people may never see your heroic acts, but isn't that the true meaning of being a hero?
Allow the glow that's within you to radiate from you, for you're truly a shining star of hope.
Clarissa Shepherd is founder of the uplifting Fellow Travelers: Support and Chat (ME/CFS/FM) online Facebook support group and author of the book of natural healing: Find Your Way: A Guide to Healing While Living With Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia