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To the People Who Give Me Advice on How to Avoid All-Nighters With My Illness

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As I lie here in seething pain at 4:00 in the morning, I can’t help but think of all the “advice” I’ve been given about my illness and how to avoid my all-nighters. I appreciate your well-intentioned words and I mean this in the nicest way possible, but please… shut your mouth.

My issues are something beyond your comprehension and when you offer these quick fixes to a complex problem, you belittle how I’m feeling and minimize my situation. I know you “don’t mean it that way,” but if you tell me to just “lie down and close my eyes” or “stop doing ______ and you’ll fall asleep faster,” I honestly want to smack you.

Here’s my night in a nutshell:

I take all my medicines as intended and lie down in my bed. I crack and twinge as the pains move about my body. I will toss and turn for as long as I can, trying to desperately find the “sweet spot” that hurts the least. Somehow there will always be those areas that will ruin me regardless: currently it’s my right side that is spasmodic below my ribs and both knees which are either throbbing or on fire.

When I’ve exhausted myself physically I move to the couch to attempt a new surface. I will sometimes pass out for a couple hours but otherwise it’s another fruitless attempt. I’ll make a warm cup of tea – but thanks to my memory issues I’ll forget about it until I find the cold mug on the counter around noon. QVC and the Game Show Network have become my best friends.

When I think I can try the bed again I slowly make my way back into the bedroom, trying not to pull anything, and get under the covers. As I lie there, I get the sensation that I can’t breathe. My palpitations begin and it feels as though I’m falling through the mattress. I can’t get a full breath in my lungs and no matter how I’m positioned, I feel like I’m drowning in my sheets. It got so bad that I slept on my floor for three months straight just so I could breathe a bit better.

The sun is now breaking and birds are chirping – a beautiful way to wake up by any standard, except I’m sleep deprived, in a great deal of pain and now I have to fight through another foggy day. I will take naps whenever possible or else I will fall on my face. I’m currently out of work due to Lyme disease which allows me time to nap – but that stops no one from judging me for doing so.

Allow me to say this loud and clear:

You do not have any idea what my life is like. You don’t know my body or my needs. Stop telling me what to do as though the answer is crystal clear because it isn’t. It’s hard enough getting doctors to believe the severity of my disease without having my peers adding to it. I am well aware of my situation and I have tried any and all methods to attempt to help myself through it.

If you must comment on my life, please do so respectfully and with regard to my situation. Offer support and ask if there’s anything you can do to help. If you have a suggestion, do not talk down to me when presenting it and don’t make me feel stupid for not trying your methods. There are certain things I cannot take/try on my protocol and there are others I have tried many times, to no avail.

People with chronic illness do not lose sleep the same way regular people do. Please be patient with us and understand that our road is long and uncharted. This rings especially true to anyone who may share a bed with us. We want to cuddle, etc. just as badly as you do, but when we feel trapped in a sarcophagus of pain all night long the very last thing we want is arms and legs wrapped around us.

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Thinkstock photo via rilueda.

Originally published: July 10, 2017
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