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...
Had a chat with my boss yesterday which upset me even though her feedback was well intended. Have been feeling stretched thin at work, grossly overextended and trying to head off the inevitable crash. Her feedback was she is so proud of how well I'm doing, how I am so strong and positive .. my stress level is self imposed because I really am not as sick as I think I am.
Then she quotes my doctor, the same one I saw in a social setting last week who did not recognize me..yet apparently he feels quite qualified to express his opinion that I am quite fine. He would not be the first or the last doc to express that opinion but I am pissed because he is the same one who looked at my test results and confirmed that I have a physical problem not a psychological one. He is the only doctor in 5 years who has prescribed a treatment that actually improved my condition. Yet he apparently thinks Im quite fine
After many years of running around in circles from doc to doc , always at square one , I have become very organized with respect to doctors visits. I have written down all my symptoms, my treatment history, I research on the web and ask specific questions about possible conditions and the tests needed to confirm or rule them out. I take notes during each docs visit, this is simple.. by the time I get through driving to the docs office, sitting in the waiting room sometimes for hours, getting through the standard poking and prodding I am too exhausted to think. I will forget much of what he says to me, I will forget the questions I need to have answered..writing it down is simple practicality. Apparently this is quite impressive to my doctors because without exception they comment at how intelligent and organized and knowledgeable I am. So when I say doc, I am so exhausted I can barely think .. they go .. no way, you are doing fine, in fact better than fine..wish I had more patients like you...AAAARGH!!
At work I work my ass off to keep my head above water. I wonder how folks dont notice the many days I sit in my chair just trying to stay upright. Sometimes the head hits the desk and someone will walk by and say "you OK Max?" then I jerk upright and do my best to stay that way. They dont see my struggle to just walk across the parking lot each morning, they dont hear me praying "Dear Lord, please dont let me have to talk to anyone today" because talking requires energy, and it requires you to make sense and some days its so hard to make sense.
They dont see that before I send out an email I reread it 4-5 times correcting typos and sentence garbles just so I can make sense. I'm pretty open with my team so they just smile if in conversation I start talking total nonsense.. then I'l just say "OK, talking garbage again..lets back up a bit..."
They dont see the hours I spend staring at my computer unable to make sense of anything before me, sometimes unable to even recognize the words on the screen. They dont see that I organize my work, taking on simple tasks when I'm tired, scheduling meetings for the times I am most alert, deferring tasks which require analytical thought sometimes for days because I simply cannot think. They dont see that I am becoming adept at working through my team, because I cant consistently do the work myself anymore. Supervising takes so much out of me sometimes, more than doing the work myself, but I have to ..because the work has to get done, whether I am well or ill.
They dont see me weaving and driving into oncoming traffic on my way home, the number of close calls and near misses I have. Driving 20 miles per hour, keeping my sister on the phone, just so I can make it safely home, get some sleep and do it again the next day.
I have a track record of excellence and I have to let go of that and focus on simply getting by. My desire to do well seems to be impressive (even though my ability to achieve does not align with my desire). I feel blessed that I can still function in the world in a way that earns the respect of others, but sometimes I wish I could just give them a glimpse into my world.. make them understand even a little...
My home life is a shambles. My 12yr old takes care of the home. He keeps the kitchen clean, cleans his room, does his own laundry and ironing, cooks simple meals. We eat take out 5/7 days. I dont follow-up on his homework as I should, he says "mom you push me hard" I say "be gratefuI really dont have the energy to push you". I feel guilty that I dont provide the support, the encouragement, the foot in the butt he is going to need to start his journey on a good foundation. BTW : after a disastrous first semester in high school, he made honor roll this semester, so I fret a bit less now. So grateful he is so self motivated.
But I get upset with him also, he says to me sometimes mom, you taught me that I can do anything I set my mind to..maybe you just need to harness the power of your mind and make yourself well .. then I want to punch him. The rest of the world doesnt see the nasty underside of my existence, but he does..how can he not understand? Then I remind myself he is a CHILD and this life for him has , unfortunately, become his normal. I have to tell him it is not normal to battle rats and roaches in your home..it is not normal to have a mom who sleeps for days on end..it is not normal to never have friends over , never visit anyone .. THIS LIFE IS NOT NORMAL! I pray each day to be well enough to show him what a normal life looks like, before he grows up with this warped perception of what normal is.
Sometimes I wonder..is the world right? Is this illness in my head? Have I created my own private hell, tormenting myself with demons which dont actually exist?
PS : I prepaid for some sessions with my psychologist, but quite frankly dont have the energy. You are my psych panel..please weigh in.
Have I lost perspective? Am I making myself crazy? Am I really not sick at all?
Then she quotes my doctor, the same one I saw in a social setting last week who did not recognize me..yet apparently he feels quite qualified to express his opinion that I am quite fine. He would not be the first or the last doc to express that opinion but I am pissed because he is the same one who looked at my test results and confirmed that I have a physical problem not a psychological one. He is the only doctor in 5 years who has prescribed a treatment that actually improved my condition. Yet he apparently thinks Im quite fine
After many years of running around in circles from doc to doc , always at square one , I have become very organized with respect to doctors visits. I have written down all my symptoms, my treatment history, I research on the web and ask specific questions about possible conditions and the tests needed to confirm or rule them out. I take notes during each docs visit, this is simple.. by the time I get through driving to the docs office, sitting in the waiting room sometimes for hours, getting through the standard poking and prodding I am too exhausted to think. I will forget much of what he says to me, I will forget the questions I need to have answered..writing it down is simple practicality. Apparently this is quite impressive to my doctors because without exception they comment at how intelligent and organized and knowledgeable I am. So when I say doc, I am so exhausted I can barely think .. they go .. no way, you are doing fine, in fact better than fine..wish I had more patients like you...AAAARGH!!
At work I work my ass off to keep my head above water. I wonder how folks dont notice the many days I sit in my chair just trying to stay upright. Sometimes the head hits the desk and someone will walk by and say "you OK Max?" then I jerk upright and do my best to stay that way. They dont see my struggle to just walk across the parking lot each morning, they dont hear me praying "Dear Lord, please dont let me have to talk to anyone today" because talking requires energy, and it requires you to make sense and some days its so hard to make sense.
They dont see that before I send out an email I reread it 4-5 times correcting typos and sentence garbles just so I can make sense. I'm pretty open with my team so they just smile if in conversation I start talking total nonsense.. then I'l just say "OK, talking garbage again..lets back up a bit..."
They dont see the hours I spend staring at my computer unable to make sense of anything before me, sometimes unable to even recognize the words on the screen. They dont see that I organize my work, taking on simple tasks when I'm tired, scheduling meetings for the times I am most alert, deferring tasks which require analytical thought sometimes for days because I simply cannot think. They dont see that I am becoming adept at working through my team, because I cant consistently do the work myself anymore. Supervising takes so much out of me sometimes, more than doing the work myself, but I have to ..because the work has to get done, whether I am well or ill.
They dont see me weaving and driving into oncoming traffic on my way home, the number of close calls and near misses I have. Driving 20 miles per hour, keeping my sister on the phone, just so I can make it safely home, get some sleep and do it again the next day.
I have a track record of excellence and I have to let go of that and focus on simply getting by. My desire to do well seems to be impressive (even though my ability to achieve does not align with my desire). I feel blessed that I can still function in the world in a way that earns the respect of others, but sometimes I wish I could just give them a glimpse into my world.. make them understand even a little...
My home life is a shambles. My 12yr old takes care of the home. He keeps the kitchen clean, cleans his room, does his own laundry and ironing, cooks simple meals. We eat take out 5/7 days. I dont follow-up on his homework as I should, he says "mom you push me hard" I say "be gratefuI really dont have the energy to push you". I feel guilty that I dont provide the support, the encouragement, the foot in the butt he is going to need to start his journey on a good foundation. BTW : after a disastrous first semester in high school, he made honor roll this semester, so I fret a bit less now. So grateful he is so self motivated.
But I get upset with him also, he says to me sometimes mom, you taught me that I can do anything I set my mind to..maybe you just need to harness the power of your mind and make yourself well .. then I want to punch him. The rest of the world doesnt see the nasty underside of my existence, but he does..how can he not understand? Then I remind myself he is a CHILD and this life for him has , unfortunately, become his normal. I have to tell him it is not normal to battle rats and roaches in your home..it is not normal to have a mom who sleeps for days on end..it is not normal to never have friends over , never visit anyone .. THIS LIFE IS NOT NORMAL! I pray each day to be well enough to show him what a normal life looks like, before he grows up with this warped perception of what normal is.
Sometimes I wonder..is the world right? Is this illness in my head? Have I created my own private hell, tormenting myself with demons which dont actually exist?
PS : I prepaid for some sessions with my psychologist, but quite frankly dont have the energy. You are my psych panel..please weigh in.
Have I lost perspective? Am I making myself crazy? Am I really not sick at all?
For the first 2 1/2 years with this I was working full time. I have an idea what you go through. You put everything in to your job and faking that your not sick while there so you don't get fired, right? At least that was what I did.
One thing I've been working on how to say properly is that I wasn't "able" to keep working that long. I forced myself. When every single one of those days is one a healthy person would call in sick if they felt the way I did, that is not able. When you are unable to function by the time you get home, you are not "able". When you go to the bathroom every hour to secretly put your head in your lap to rest, because you can't sit up that long at work, you are not "able".
It sounds to me that is what you are going through. If you are having near traffic accidents because work wears you down so bad I think you fit the not able category. More like forcing yourself to work out of desperation - that is if you are anything like me.
No, you are not losing your mind. I am guessing you have looked at those symptom lists like the rest of us. You have the debilitating fatigue, the brain fog, the post exertional thing, and probably some other stuff too. I find it helps to go over that list again in moments of doubt.
No matter how well meaning your boss is, you ought to seriously consider correcting her. This is not a mental illness. The only way your stress is self imposed is if you are doing more then required at the job. It sounds like a cop out comment so she doesn't have to accomodate you.
Telling you that you are not as sick as you think you are is seriously insulting. It is horrendously rude. It's like saying you are a liar and stupid. I don't think you are either.
At the very least I hope you tell her that saying you are not as sick as you think you are is not true and very rude.
If you can at all manage it, hire someone to clean once a week. Not the typical kind. Look for one that will do whatever housework you need, even laundry and dishes. Some companies will only do what is on their list. Find one that works off your list instead. I did this the last several months I worked. It really helped. It took a lot of pressure off.
I had trouble remembering what my symptoms were when I was at the dr office. A direct result of trying to work with crfs. I bought a little notebook, a little bigger that a receipt. I kept it in my purse. When I thought of a symptom I wanted to tell my doctor about I wrote it down.
It's good to look for the behind the scenes results of your symptoms. Maybe your doctor will stop saying your fine and nearly patting you on the head if you give those kind of details. Like not just saying work wears you out, but how many times you accidently drove into oncoming traffic as a result. Not just that you are tired at work, but how you passed out and your head landed on the desk. See what I'm getting at?
For work I needed to fake I was healthy. When my symptoms started going up I knew this was very important. But I found myself doing the same sort of stuff when I wasn't at work....like it stuck that it was important but not always why. I intentionally stopped hiding some of it and that helped those around me to "get it" a little better.
When I was working I asked a huge favor of a friend of mine. Work was getting real bad due to my symptoms. I wanted desperately to quit. But if I did I wouldn't have enough $ to survive off of and I was afraid the father of my youngest would try to get custody. I called my friend and told her all the reasons I wanted to quit and all the reasons why I shouldn't. Then I asked her to tell me why I shouldn't quit when I asked...I did rather often. I would want to quit and no there was a reason I shouldn't but couldn't remember why. I'd call my friend up and she would tell me. If something changed she helped me sort out if I should keep hanging on to that job.
I hope it goes well with the psychologist. I wish I could do that.
Oh yeah...I think I started a point and left you high and dry. A strange part of brain fog I have is to remember only part of something. I will get this feeling like there is something missing but can't always recall what. This can especially happen when it comes to defending myself. I get the feeling what they said isn't quite right but can't remember what isn't right about it.
I have the feeling you might be experiencing that too. People say the cfs is all in your head and you know that isn't right...but you lose the thoughts you had carefully planned to say when that happens. Instead you start thinking maybe they are right since you can't remember anything concrete about why they aren't. Later your symptoms aren't as bad and you can remember the carefully planned speeches in your mind. Sound at all right?
I did this on Monday. My brother was grilling burgers. He asked me how I wanted mine. I said pink but not red. I ate it that way. That is so not like me. Ever since the E. coli break out in Washington in the early 90s I won't eat any ground beef that isn't browned all the way through or let my kids eat it rare either. Since it is cut in the middle (because it is ground) it is the only way to take away that risk. But steak is only cut on the outside. I have my steaks pink. I couldn't remember I never eat the burgers pink. I didn't realize what I did until several hours later, maybe even the next day.
It's bothersome. It isn't just the temporary forgetting. It's being....not like yourself.
I wrote a poem once, called "Look behind the wall". I don't remember the specific words anymore (CFS foggy brain), but the general message was see the real me behind the front I present.
I admire that you are still working. I took early retirement because of my CFS illness. I still try to work part time when I can and volunteer. It is a day to day struggle to present that "I'm doing fine (considering my illness). People don't want to hear about our CFS world. I wish we didn't have to suffer in silence.
I struggle, and get emotional, ever time I have to be an advocate for myself when I physical therapist, new doctor, etc tries to suggest something to help. They just don't get it, and then I look like the mentally ill because I get so emotional. I am not mentally ill, I am physically ill and doing the best I can.
If this doesn't make totally sense, please remember I am a tired, foggy brained person with CFS. Thanks for letting me vent my frustration, but I do understand and can relate to everything you are saying.
Let's stick together and support one another. We are strong people.