Some people in my M.E. Facebook group have been posting photos of their “bad” days to try to raise awareness of the plight of severely affected patients.
This is one of my bad days, which is most days recently (taken after hours of shaking chills and horrible nightmares during a sunny afternoon, with a blood pressure of 76/47 even after pints of salt water and electrolytes).
Rag and Bone Shop of the Heart 
Oh wow, that looks like the flare-up from hell. 😦 I hope you start having some better days soon.
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Thank you, Miss D! Blood pressure has been behaving a bit better lately. 🙂
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My heart breaks. I had a mini episode of the shakes and feeling faint while lying down in bed the other night. It was nasty but only lasted an hour until I passed out. Can’t imagine what days on end must be like. Wishing you better days. xx
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Thank you, Marie! The acute viral/encephalitic/syncope symptoms might be some of the worst we experience… Fingers crossed it’s better days for both of us from here on out! X
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What a really bad time you are having.
Hope it eases off soon.
Amanda
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Thank you, Amanda! 🙂
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I’ve seen a lot of people doing this too, and everyone who uploads these photos in my opinion are brave for doing so, putting yourself out there when in such a vulnerable and bad way isn’t easy. I’ve had my fair share of bad days lately but I haven’t had any photos taken, I might have to ask one of my family members to snap a shot when I’m in a bad way so I can help share awareness of the worse side of it too.
Take care of yourself and I hope your dog is giving you lots of feel better soon cuddles. xx Hayley-Eszti
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If I weren’t trying to be somewhat anonymous, I could post some much more disturbing photos. Lately, I really want to shout out the suffering in pictures. We suffer too much behind closed doors!
I hope you’re doing ok, H-E. X
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The blood pressure thing, for me, is the worst symptom, most debilitating, and causes the most symptoms. It’s definitely no fun. Nobody really understands ME/CFS unless they have it.
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My BP is so much better when I don’t drink electrolytes (Nuun and ElectroMix)… Our bodies are backwards!
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You know, any “normal” person who had a blood pressure like that would go to the ER. yet we just suffer through it because nobody takes us seriously. In fact my doctor said “low blood pressure is better than high blood pressure, so that’s good”…. I’m like, are you serious? You’re fired, doc!
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I’ve been telling doctors and nurses for years that I am dizzy when I stand up and my BP is regularly 70s/40s, none of them paid attention until I started collapsing. In a way, I’m happy I know better than to go to the hospital – money and energy waste+ germ factories!
Hope you’re doing ok, S. X
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I’ve been trying to get better about taking photographic evidence of the bad along with the good, but I haven’t yet brought myself to share any. I realized that if you just look at my life in snapshots, it looks like I’m perfectly fine. Sure, there I am with my sister at Christmas. But those pictures don’t show that right after that I lay back down, or the shakes that came on later that day, or the horrible flu-like state the weeks after, etc. They’re only the smallest and best tiny piece of my reality.
It’s tough to think to grab the camera when I’m feeling like crap. But I’d like to, if only so that if my insurance company ever decides to make an issue of my claim, they’ll have the real story.
I’m so sorry you’ve been feeling so unwell. I hope it eases up on you soon.
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It’s so interesting what happens to a person – or, at least, to me – when trapped in a house without social contact. I have developed this scream deep inside that says, “look what’s happening!” I haven’t been very open about my illness and I sometimes regret that because I don’t have people rallying to help (not that they necessarily would, but maybe even having support on Facebook would make me feel less isolated).
I keep finding myself wanting to document and advertise this hell so people are educated like I never was… but it feels like a narcissistic leap to say, “hey honey, I feel like I’m dying, but can you take a quick photo?”
My best friend is a photographer and she took a picture of her son in the throes of chicken pox which I’ve always loved- it was very moving- so, we need to document in pictures what people don’t understand from words.
Hope you’re reasonably ok, my friend. X
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