Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
hi,
just stopping by so somebody knows i'm alive. it's a bad day in this cracked peanut shell of a body.
my brain is sideways, my stand up straight mechanism doesn't work, i got pain in places where pain ought not to go.
senor cfs is holding me hostage, fanny fibro is tying the ropes, sheryl sjogrens is withholding relief.........artie ankylosing spondilitis is cracking walnuts on my spine........opie osteoarathritis is cracking jokes about the lady who wanted to cross the road but couldn't. seriously lame jokes.
want these conditions to take a flying leap today..........but they never do.
there's more but you get the idea........it's a tough day. i just need a little reassurance that this will pass........my brain hurts. i don't wanna be alone with this crash. i wanna exist.........beyond the walls, beyond the quiet.......all the while knowing that i am blessed to have walls and quiet.
illness is confusing..........hard and at times seems beyond........what we can handle. but i've been here before........just gotta reach out......then surrender all this pent up stuff so i can lean in to the crash.
do you ever feel lost during this battle of the body vs. the mind as you are crashing? i still fight it and i know the crash wins..........but the natural reaction is to try to stop the battle.........it charges in and takes me down, it's a TKO every time...........i'm just gonna lie here on the mat and pretend none of my conditions can see me..........crawling off to bed now.
time to be still and quiet, wishing you gentle breezes, comfort and rest.
just stopping by so somebody knows i'm alive. it's a bad day in this cracked peanut shell of a body.
my brain is sideways, my stand up straight mechanism doesn't work, i got pain in places where pain ought not to go.
senor cfs is holding me hostage, fanny fibro is tying the ropes, sheryl sjogrens is withholding relief.........artie ankylosing spondilitis is cracking walnuts on my spine........opie osteoarathritis is cracking jokes about the lady who wanted to cross the road but couldn't. seriously lame jokes.
want these conditions to take a flying leap today..........but they never do.
there's more but you get the idea........it's a tough day. i just need a little reassurance that this will pass........my brain hurts. i don't wanna be alone with this crash. i wanna exist.........beyond the walls, beyond the quiet.......all the while knowing that i am blessed to have walls and quiet.
illness is confusing..........hard and at times seems beyond........what we can handle. but i've been here before........just gotta reach out......then surrender all this pent up stuff so i can lean in to the crash.
do you ever feel lost during this battle of the body vs. the mind as you are crashing? i still fight it and i know the crash wins..........but the natural reaction is to try to stop the battle.........it charges in and takes me down, it's a TKO every time...........i'm just gonna lie here on the mat and pretend none of my conditions can see me..........crawling off to bed now.
time to be still and quiet, wishing you gentle breezes, comfort and rest.
hug hug
Brave woman you are to reach out. You have learned many wise things from this illness. Love yourself, take care of yourself. I am with you in heart & spirit as you journey. Lean in, let go, trust your wisdom. I send much love & hold our inner children.
I have often wondered why we fight back so hard. I think human nature is part of the answer, but I also think that our society values "pushing through" and "fighting back" to an unhealthy degree. Not to mention having doctors and loved ones convinced that we *should* do more. (Don't get me started on "graded exercise therapy"!) Listen to your own body and your own wisdom before anything or anyone else.
Your post brought tears to my eyes. I'm so sorry you are going through this. But this, too, shall pass.
Sending you hugs and the patience to get through this!
I do think that we push too hard on crash days/weeks......we just SO want to do something normal. ANYTHING! But the body won't move, the brain is mush, and the pain is killer.
Praying that you can lean into this crash, the way you always do, and find comfort in your Spirit........lean on the Master......come here as you did and tell us about it. I do believe that this site and the ability to express our suffering here is healing. I know what the people here have meant to me! It's phenominal!
Rest......rest......rest!! We're all here!
the bad dizzies, vertigo........it's the pits.
i can always tell when folks are in care of each other here........somebody will hug a body or pray for a person and there will be a shift in symptoms. a positive shift. a few degrees of better can be huge for us................huge! thanks for your kindness! xoxo
I post comments and later wonder if I've expressed myself properly because my brain is just not in my complete control at the moment.
"Lost during this battle of the body vs. the mind"......so eloquently and precisely stated. Thank you for that, for sharing this horrific experience.....I know I'm not alone.
Please know that YOU are not alone.
Genie
I think I need to vent. I am so grateful for this DS group and all of you. I have been sick over 25 years and the good days seem very minimal. Luckily I found an anxiety course this spring plus some counseling that helps. However I am getting increased nasty symptoms that usually indicate winter relapse. How can I go until spring like this? I have severe POTS and long term severe hot flashes. Since May I have had to wear freezer bands on my head at home, use menthol cream and spray my face with water continually. I have had 24hr burning mouth syndrome for 2 years. I cannot touch my lips together, so resting is impossible. Tremors in my legs and torso have been 24hrs for about 2 months. I have learned on line it is called Essential Tremor. In the evening I can hardly watch TV because the burning skin rises up my stomach to my face and head,feel nauseous like my head will explode. I feel like my whole body is vibrating, it is sickening. I used to get the Pots racing heart, heat, etc worst in summer, now have in cold weather. If I meet someone on the elevator that talks to me I feel like I am going to pass out, just from a simple conversation. Always have to hide it and continue on feeling angry, sick and like physically collapsing. I would love to give up one day. I have so few moments now that I am not completely panicky or sick. Oh and BTW, have tried everything, practically have a nervous breakdown if someone mentions a supplement, med or naturopath.
THERE, I feel better. I am so sorry if anyone finds this overwhelming. My heart goes out to anyone whose suffering. Thanks for listening.
Your reference to being in an elevator made me wonder. Wouldn't you have substantial relief if you just gave it all up for a while?
And you do know that your meds may be making the problems worse? "Some medications including benzodiazapines, beta-blockers, sedatives, antidepressants, and excessive use of antibiotics can cause fatigue."
Have you tried not trying?