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...
OK DS friends, Max is fuming. Really just part of my process of adjusting and coming to terms with what life with CFS means. Having a rough patch now since I got a rare glimpse (a whole 5 remission days) of what life was like before CFS. Back in CFS mode, hurting like heck and just in negative headspace.
In my mind the CFS lifestyle is simple REST-PACE-REST some more. Doesn't sound too bad unless you break it down...
REST - sleep..all the time. Like 20 hours per day sometimes. Sleep for days, weeks, sometimes months on end waking only to eat and eliminate. Sleep until your body hurts and STILL wake up tired! So you sleep some more...
PACE - watch what you do and try not to over-exert. Some days brushing your teeth is over-exertion. Some days swinging the legs off the bed and standing up is over-exertion. Some days you feel perfectly fine so you walk at a normal pace and only realize you have overdone it when you crash. WHAT THE HECK! Is this pacing thing actually doable?
Yes I know I can no longer judge myself by normal standards, so a normal person can get up and make themselves a nice healthy shake without crashing afterward. I can't. A normal person can take a nice 30 min walk to calm down from a stressful day . I can't. A normal person can have a stimulating discussion and not crash afterward. I can't.
I have spent the better part of the past year trying to come to terms with all the things I CAN'T DO and it PISSES ME OFF!
I HATE not having a handle on what I may be capable of not only from day-to-day but from one minute to the next. I HATE limiting myself even when I may have the capacity to do something because I am AFRAID to try. I HATE sleeping my life away or lying about in a vegetative state for the better part of the day most days.
I HATE the things that I notice which are slipping at work. I hate trying to guess whether I will have my job 6 months or 6 years from now.
I HATE being unable to plan anything or commit to anything because more often than not I cant follow through.
I HATE worrying about my future, about whether I will be able to send my son to college, about the impact this illness is having on him.
I HATE saying I CAN'T.
Most of all I HATE NOT KNOWING.. what I'm up against, what to expect, how to handle it.
I try to attain/maintain a positive mindset every day but there are periods when it is HARD WORK. Right now I am just royally pissed off at this ridiculous illness.
In my mind the CFS lifestyle is simple REST-PACE-REST some more. Doesn't sound too bad unless you break it down...
REST - sleep..all the time. Like 20 hours per day sometimes. Sleep for days, weeks, sometimes months on end waking only to eat and eliminate. Sleep until your body hurts and STILL wake up tired! So you sleep some more...
PACE - watch what you do and try not to over-exert. Some days brushing your teeth is over-exertion. Some days swinging the legs off the bed and standing up is over-exertion. Some days you feel perfectly fine so you walk at a normal pace and only realize you have overdone it when you crash. WHAT THE HECK! Is this pacing thing actually doable?
Yes I know I can no longer judge myself by normal standards, so a normal person can get up and make themselves a nice healthy shake without crashing afterward. I can't. A normal person can take a nice 30 min walk to calm down from a stressful day . I can't. A normal person can have a stimulating discussion and not crash afterward. I can't.
I have spent the better part of the past year trying to come to terms with all the things I CAN'T DO and it PISSES ME OFF!
I HATE not having a handle on what I may be capable of not only from day-to-day but from one minute to the next. I HATE limiting myself even when I may have the capacity to do something because I am AFRAID to try. I HATE sleeping my life away or lying about in a vegetative state for the better part of the day most days.
I HATE the things that I notice which are slipping at work. I hate trying to guess whether I will have my job 6 months or 6 years from now.
I HATE being unable to plan anything or commit to anything because more often than not I cant follow through.
I HATE worrying about my future, about whether I will be able to send my son to college, about the impact this illness is having on him.
I HATE saying I CAN'T.
Most of all I HATE NOT KNOWING.. what I'm up against, what to expect, how to handle it.
I try to attain/maintain a positive mindset every day but there are periods when it is HARD WORK. Right now I am just royally pissed off at this ridiculous illness.
Like, the whole thing just went away. As you become used to crashing and then getting back up and then down again, blah, blah....I did not know what to do with myself. I knew it wasn't going to last forever.
Imagine what it's like, to have the crash stop......and not come back.....and still stay away....and you start to wonder!! Where is it? Where did it go? I know it's going to come back. Where is it? How much well time will I have.
Well, after two months, I was wishing I were in a vegetative state, because I was not knowing how much longer this was going to last, and I was living every day waiting for the shoe to drop. It was horrific.
Almost two months to the day, I felt the CFS heaviness in my head, and I knew.....here it comes. OHMYGOSH! I can't believe I'm saying this, but it was almost a relief. I know how to be sick now. I had forgotten how to be a well person and I was way out of my comfort zone. I was a mess.
This is not a messed up story. This is what happened to me. When you've had this disease for eight years, and all of a sudden, it takes a hike....it leaves you in a very uncomfortable state of angst, that I have yet found words to describe.
I am so thankful for every single one of those days. I think of them when I'm down for three months, like I am right now.
I hear ya, my friend. I SO hear ya! This illness is the most difficult thing I've ever experienced in my entire life. There are no words to describe it. None. Not one. None.
Let us try to forgive ourselves and continue to support each other. We choose life, and may light comfort our dark times.
Thank you for this opportunity to agree and "spit tacks" of anger and frustration with this stupid disease. ****slow exhale******* :)
However, don't get me wrong. Venting about the negative is also very good for us. You vent away, Max.
When it goes on for years it does get rather annoying. I'm glad I've got the energy to enjoy the important things like my family, serving God, reading on here, friends(they don't get much time), and writing.
Take care all.
DarlaC, I understand how you feel. It's not messed up, it may seem so to a normal person but not us. I've never had a remission like you. I was thinking the other day, if I got better, what the hell would I do with myself. Going back to work and a normal life seemed scary to me. When you are sick for so long, it's all you know. However, I know anyone of us would LOVE to recover and live a normal life again.
Hope you are feeling better!! Vent away, that is what we are here for.
My spirit animal has always been a cat so I've thought of myself as being cat-like in that I have burst of energy (as it were) and then long naps.
Nina1959, you should get ouf othe witchcraft you are into. I can promise you that demonic spirits are not going to help you. They have only one goal in mind, and that is to destroy you.