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.
I am self employed and after two and a half years of hardly working, I was eager to get back to work and save my career, which was suffering financially. I had deadlines to meet and I worked hard to meet them, I know I wasn't working at the pace I used to, but comparatively, it was definitely progress. Then I started feeling weird, like a cold was coming on, and aches all over my body. I ignored it. Maybe it was cold (I told myself) but then a month ago, that soul-quenching, leg dragging fatigue returned. After another round of tests, the doctor finally concluded that I had CFS.
Part of me doesn't want to accept it. While I know that how I feel is not the normal me (I was very active, a workaholic really), I can't help hearing this voice in my head that says that this can be overcome if i just don't accept that my body is this weak. Just push past it and prove that really I am just out of shape and need to get my fitness back.
Despite the evidence that pushing myself makes me feel worse (not only the fatigue, but I feel like I am drugged, dizzy, "out of it" and I get weird floating pains through out my body), I keep going back to this thought that I am not really sick.
Does anyone else struggle with this? Or did? How do I accept and not feel like I have given in? I am not typically an emotional person, but when I touch on this, I start to feel very bad and then the wanting to push past it and deny it takes over. I tell myself if I don't crash then I don't have CFS if I do, well then I know just hard I can push myself.
One problem is that it seems to be different all the time. Is that possible? Yesterday I shoveled snow and I seem Ok, a little foggier in my head than usual. A few weeks ago I shoveled snow and it seemed to cascade into the worst fatigue in several months. So, is it the CFS or just poor fitness? I cannot figure this out.
It makes no sense and everyone's experience is different. I'm grateful that my kids were in college or grad school when I got sick. I had to quit working but that didn't bother me.
I wasn't terribly sick for a number of years. I had good days and bad and sometimes it lasted for a week or ten days. Then I had back surgery. Surgery is hard on anyone but for us it's torture. And can make us worse permanently. That's what happened to me. My neurosurgeon told me about this and asked if I could live with the pain and not have surgery. I couldn't live with the pain so I had surgery.
I've had 5 surgeries since then. Two on my knee, a mastectomy followed by a Tram flap reconstruction (8hrs.of surg.) with two follow-on surgeries.
So, I now have bad days and worse days. My greatest sorrow is that I can't walk my dogs or play with them like I used to. They are what gets me up in the morning. I cry into their fur. My Golden pulls me up if I fall and stays by my side if she senses that I might fall. I couldn't go out in the yard without her. And my 9 month-old Westie named Percy makes me laugh. He's a little clown. He's also a momma's boy. He runs to me if he's scared or sick.
I wish my kids and my granddaughters lived closer. But they call and we text and we Skype. My oldest son and his wife have a 9 month-old baby girl, Sylvia. We Skype when Sylvia is in the mood. It makes my day.
I can't tell you how to deal with all the changes in your life. I just take it one day at a time. People tell me I'm strong. I'd like to punch them. What choice do I have? I have to be strong or I'll end up in a padded cell. I have to be strong for my kids. They are building their lives and they can't be worrying about me. They are all loving and supportive. I look at them and I am satisfied that I did what God put me on the earth to do. I raised 3 amazing people. They have all been tested and each one got up and kept going. They are all bright and interesting. They work hard and they each have a strong social conscious.
I love my kids and I adore my granddaughters. They are who keep me strong. They believe in me. They love me.
And I have a wonderful husband who takes care of me. And faith that this life is only temporary. My real life starts when I pass into the arms of God.
As wonderful as that will be, I'm not in any hurry. I want to see my Sylvia graduate from college. And maybe dance at her wedding.
I hope that you can find what works for YOU. Don't let anyone tell you how you should be handling this or that they know about a diet/herb/supplement/vitamin/yoga/acupuncture/ etc. You have to find your way. God bless you.