What You Would See If You Looked Under the Blanket of ME/CFS
Sometimes I feel like I am lost, not as in aimlessly wandering and off the track, but as in missing and can’t be found. But I am here, under blankets.
Much of the time I can usually be found under an actual blanket on the couch or in my bed. Most of the time I am under the metaphorical blanket cloud of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It is hard to see me and to truly know me because I feel like this thing is covering me and sometimes changing who I am. I would like people to see me as social, outgoing, helpful, reliable, energetic, funny, spontaneous and always up for an adventure. It used to be easier to see those things, for people to see me and know what kind of person I am. It’s a bit harder for people to see the real me now, they might see it in bits and pieces every now and then, but stick around long enough and you will also see the crash. The fever, nausea, pain and sheer exhaustion as I crawl back under a blanket and wait for the fatigue to pass or to lift for another few moments so I can go back to trying to be me.
The blanket of chronic fatigue is heavy and hard to carry. It clouds thinking, obscures my view and turns my limbs into lead. I can’t think or see clearly with this thing on me and lots of the time I have to give in and lie down because I can no longer carry it. All I can do is rest and wait for enough energy to return so I can pick up the heavy blanket and keep going. I have been carrying this blanket for nearly three years now and I know people who have been carrying it for much longer. Every day for years they have done the marathon of carrying the ME/CFS blanket. It is hard. It is wearing. It tests mental strength. It is relentless.
It is invisible. No one can see it. There are no tests or magic you can do to make it visible. You have to trust me and believe me when I say that this has changed my life. That although I may appear fine and the same as I have always been when you see me out of the house, this is not my normal anymore. You have seen me on one of my good days where I can not only get out of bed, but also out of the house. Underneath my smile and chat, I am struggling and fighting to manage my fatigue and not let it take over everything. You do not see the moments when I return to home and the price I have to pay for going out for a few hours.
Some doctors believe in ME/CFS and try to help, others have told me that it is not real. Some people think I can eat or think or pray or exercise my way out from under the blanket. Some of these things may help and believe me when I say I have tried. I am not laying here passively under this blanket. I am hoping and praying and strategizing how I can get rid of the blanket for good, or at least manage to carry the blanket while causing the least amount of pain to myself and others.
The good news is that good people and understanding professionals can help me carry my blanket and give me hope. If you are under a physical or metaphorical blanket today, may you cling to hope and may that hope make your blankets feel lighter and your body at peace.
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