I posted this on FB one year ago, today. I pray it helps someone. Share, comment, vent, if you want. ❤
When you’re awake because the pain in your back, hips, legs and elbow are screaming, in tandem (after your pain meds), and you can’t find a comfortable position sitting, lying or standing. Oh, goody. Losing the feeling in my foot. That’ll stop the pain (there’s always a positive🙏).
It’s times like these, when I begin to think of the persons who’ve said, “Oh, there’s a lady on my job that has ‘that thing’ you’ve got’. What is it, Fibrosis, Famalgia? Well, she seems to make the best of it, though. Hey, we’ve all got aches and pains, but we also have bills to pay, so…”
Then they go on to say, “Why do you put your business out there on Facebook, doing videos? Who needs to see you lying in bed? That’s ridiculous! What is the purpose of it?”(Yes, right to my face, over the phone, etc. )
People like you are the reason for the videos. People like you are the reason an UBER PRIVATE person like me, is willing to share. WHY?
A. As I’m writhing in pain, and posting on FB to distract myself, as my lip is already bloody from biting it, WE MUST HAVE HOPE. We MUST believe that this IS NOT not our ever after.Give thanks for every single moment, every single success!
B. Awareness: Raw, this is what it looks like, good, bad and ugly. This is NOT a Lyrica commercial.
The depression/ suicide rate is incredibly high for people with chronic pain, and invisible illnesses, and it’s rarely reported.
We lose jobs, homes, cars, pensions (spent while waiting to be approved for disability); we have to fight for insurance, we have to tirelessly search for medical professionals that don’t think our issues are strictly mental health, e.g. malingering, munchausen syndrome, BPD, MDD, Bipolar, etc., or if we weren’t so “morbidly obese”, we wouldn’t have pain. More often than not, the results are financial, mental, Spiritual, and emotional bankruptcy. Eventually, we become isolated, leading to severe depression. The loss of friend and family support, when you need it most, is terrifying and hurtful, all at once. Many believe, and will say, we’re “exaggerating”, or “you’re still in bed?”, “if you would just try working out, just a little walking”,” you can’t come out for a little while? I’ll come and get you. ” (still gotta get up, shower, dress, come out, etc.) “can’t you at least work part-time?” “Ok, I know you’re not well, but this clutter is ridiculous! ” ” My cousin has it, and she does lots of things…” I’m sincerely happy for your cousin, or that lady on your job, and everyone who manages their disease and/or illness. We’re all different, and experience things based on who we are, and how we are made. MOST times, nowadays, THANK GOD, I manage ok. Flare ups come with the territory of the unpredictable demon, Fibromyalgia. It’s always something you’ve never experienced, and you have to adjust, on the fly, as best you can. Add to it Chronic Fatigue Syndrome, Insomnia, Arthritis, and Scoliosis, multiple kidney stones, bruising, Pre-diabetes, and NOW it’s a party. Oh, my migraines have made a comeback, too.
We often have the power of life and death in our words. Speak wisely, or be silent.
C. YOU ARE NOT ALONE! Every single time I post or do a video, I cringe. I don’t like anyone knowing any of the aforementioned. I suck it up and do it, because, among other things we sufferers have in common, is the thought that these things “only happen to me”. Unexplained rashes and bruises; severe GI issues; losing teeth; losing hair; poor equilibrium; complete exhaustion after showering, then getting dressed and being to tired to go out, afterward; all over nerve pain, where you can’t have anything, or anyone touch you (Allodynia); new allergies; edema in bizarre places; weakened immune systems, readjusting your ENTIRE WAY OF LIFE……ALONE. But we LOOK fine, right?
I AM ME. My body chemistry is different from anyone else’s. I can tolerate ENORMOUS amounts of pain. Always been that way. That’s why Fibro freaks me out. It’s like your norm is breaking the sound barrier, but this is warp speed × 10. So, if we say can’t do something, go somewhere, or yes, I’m still in bed, that’s it! Don’t need your pity. Rarely ask for help, as we’ve learned the hard way, people want to “Help “in their own way, as opposed to asking what we need. Some ask, praying you’ll say you don’t need anything. Sometimes, we just need to be believed. Maybe hook up, when we are feeling ok, but being aware it can change in no time; not being angry/disappointed if it does. Call, visit and don’t discuss illness, unless I mention it.
I guess I’m done. Like the rotisserie I am, I have to turn, now. I hope u read this, and for some understanding. Wanna share our comment, by all means? Questions? Ask.
I’m weary of reading, and hearing sufferers say, “I CAN’T do this anymore”, or “my spouse left and took the kids because I’m too lazy”. “The doctor doesn’t believe me.” “I can no longer get the pain meds I need because of the ‘opioid crisis’. ” “I can’t afford my copays for specialists, tests, meds, medical equipment. ” “I’ve lost everything and I’m homeless. ”
Prayers for ALL sufferers of auto-immune/ invisible illnesses. NEVER GIVE UP HOPE!