It’s been a really long time since I’ve been so flaired up to the point of being exhausted, yesterday I tried several times to get up for work only to nearly pass out so i ended up calling out. I have been working 6-7 days a week now for several months without hardly any rest, it’s no wonder I went into a flair as bad as I did to the of passing out.
So I get to work today and everyone is like so what’s the problem why did you call out?? So I tried to explain it to them only to fail. I’m having a hard time explaining to my coworkers about Sjogrens and autoimmune disease and that me working like I have for so long with much rest sent me into a flair, any tips?? I’m having serious issues with this!
Moparmom, I'm so sorry to hear what you're suffering through. You're likely right in having worked so much with little to no down time causing your flare up. Our bodies need breaks of rest even when we are not having flares.
Having the sjogrens & fibro too, I understand what you're going through. I stopped my plaquenil today, for 2 weeks pre-op & 2 weeks post-op, and I know it's going to trigger a flare up. Unfortunately I don't work, so it makes it hard for me to understand that angle you're dealing with; coworkers who are unwilling to learn or be empathetic to your conditions.
The only thing I could suggest is asking if any of them suffer from migraines that put them in bed, or arthritis that can at times be disabling from walking to simply holding objects that you use for daily functions (phone, utensils, hair styling, dressing, etc). I have these too, and sjogrens and fibro are 10x worse by far, especially during flare ups.
Just being touched by someone, or trying to massage ointment into muscles that are so sensitive from neuropathy signals they scream "stop;" it's unbearable. Even the covers touching my feet during flares has become difficult. I'd compare it to a voodoo doll with hundreds of pins sticking completely through from one side to the other (mind you that's a visual expression). A flare up is like have a electrical shock from touching a wire or outlet wrong, except the neuropathy symptoms aren't temporary for few seconds only, they go on & on non-stop until the flare is over. It's like being the light bulb that pulses with constant electrical current running through you and the switch never gets turned off; the bulbs finally wears out from overuse & blows out to be replaced. The muscular discomfort is like having a muscle spasm that won't stop; worse than hitting your funny bone or having a night time leg cramp that wakes you from sleep, because again it never let's up, never stops until the body is exhausted & feels nothing. It's when rest alone is the required replenishment of energy & feeling well enough to function through activities of daily living. It's like having overworked muscles that are so fatigued you can't find the strength to lift an arm or leg, let alone your whole body. And at the same time these overworked muscles are in such pain it would be excruciating to try & massage them, to touch them in any form, gently or firmly. I can't think of any better way to describe flares & sjogrens and fibromyalgia. I hope is helpful, and you are welcome to print this or screen shot it, to share with your coworkers...that you arent alone and there are many of us who silently suffer to those who are blessed enough to be without chronic debilitating health issues.
Sending you gentle hugs, love & prayers my friend, that somehow someone will be able & willing to listen & understand, then be curious enough to research, and just maybe get in your corner to help be an advocate or at least a support for you when the flare episodes occur, which come randomly & hit us out of nowhere. 🙂💞❤🙏🌷