When Myalgic Encephalomyelitis Drains Your Energy

It’s not that I’m hungover or can nap it away. It’s likely that I woke up, got dizzy and had to drop to the floor with weakness. It might be because I didn’t sleep at all or am running on two hours light sleep.

If I don’t have the energy to lift my hand to brush my hair because there is no energy in my cells, it’s unlikely I will make it to that thing we were going to do. And I’m truly sorry. I’m wretched with guilt for letting you down again. Believe me I want to be a better friend, sister, daughter, teacher, and colleague.

It’s not being able to exercise like I used to, hike, boxing, weights, dance, CrossFit, the list goes on. It’s because I never enter deep sleep my body never repairs fully. It’s stretching on my yoga mat at 4 a.m. in the morning because the pain and spasms and burning radiate through me, keeping my mind awake and distressed. It’s because I have to think out every step of an activity and make sure I’m safe, have a way home if I power down, and I do not want to cause a scene or be “that person” looking for attention because I have to mention the word illness, or be the one at a meal that says I can’t eat gluten, dairy, sugar, caffeine and alcohol…That I can’t make it out tonight.

It’s accepting I can never have kids as I struggle to keep a part-time job and have to lay down in bed, still not sleeping, as much as possible to rebuild some energy for the next shift. It’s accepting the same for not being able to see myself in a relationship.

It’s enjoying a coffee and a catch up with a friend, coloring with my niece, or a big family dinner. Those things make a beautiful day and after just those little snippets of connection, that feel like paradise that also wipe me out for the rest of the day. But it’s totally worth it to see your smile and hear your imagination; it makes my heart sing.

It’s because sounds and lights are amplified a thousand times through this migraine that my brain fog makes it hard for me to hear what you say sometimes, while my stomach sends nauseous waves through me. I feel inadequate because I see the look in your face, knowing that I’m not taking in what you say – but I’m trying hard to catch the words. Yet, it won’t go in fast enough and then I can’t recall words to continue a conversation so I rattle off safe words,”Really? Wow. That’s amazing. Well done. fair play.” The list goes on. It makes me look superficial and vacant and I hate it, because I feel you more than I hear you, but I’ve yet to master how to communicate that back.

It’s not being able to control my body temperature, rattling cold on the inside and clammy on the outside that make me pack two seasons of clothes each day. It’s sleeping on an electric blanket, with two heaters on covered in fleece pajamas and a hoodie, with my teeth rattling that leave me too drained to make my prior commitments. And I hate looking like a flake. I do have consideration for you and I promise if I can, I will.

It’s trying to pace starting my business and accepting the one step forward and the two steps back. It’s feeling like I’m living Alanis Morissette’s “Ironic” song…Don’t ya think?

But myalgic encephalomyelitis (ME) is also helping me to grow up and appreciate all the love and support I have in my life. My family are the most amazing people you could ever meet; they are pure love and compassion and they light up my world. It’s humbling to ask for so much assistance only to realize they were always there to help me. It’s the realization I’ve pushed people away with my stubbornness and independence and that ME has brought you back with unconditional arms outstretched for me.

That love continues when I take a stroll in the park and feel the trees share their strength with me. It’s slowing down long enough to realize there was never a race. And it’s letting the pain and the grief and regret in and holding it in my own loving embrace and sending back out that love and forgiveness to anyone else who feels it too.

It’s seeing that the world is in pain everyday, crying out for some balm and lighting a candle, wishing for it to find you quickly to take away your pain and bring you all the relief and happiness you deserve.

It’s a wild ride, a curse and a blessing, the biggest learning curve I’ve ever meandered and I couldn’t do it without you. All of you. Thank you.

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