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...
WARNING: a touch of bitterness and overwhelming fatigue below. Enter with caution.
APOLOGY: sorry this is so long for brain fog people. Just skim.
Didn't sleep AGAIN last night. Not sleeping is weird. Things take on an eerie sense of meaning that is hard to shake off. Especially, when it goes on and on.
I've been having inharmonious conversations with God. I really haven't been able to feel Him much for a long time. Quite sad. Please, no lectures on grace. Not now.
When you're not blazing tired you can focus on blessings. When you ARE blazing tired things tend to get hazy, as in not so clear. There's a lot of emotional numbness. Yet, there's pain. If you don't know what it's like to be numb and yet in pain then you probably aren't blazing tired.
Part of my problem is that thoughts keep creeping in about how Im not better than last year or the year before. In fact, I think I might be worse. There may be ebbing and flowing through this illness for some people but when the flowing is in flood-like proportions for what seems like an unendurable length of time it's just plain bad news.
Yes, there are those who are worse off than me. Yes, there are degenerative diseases that take a far greater toll. Yes, I GET IT! Dang it, I dont want to get it. Getting it hurts. Getting it makes me realize this is it. Getting it makes me have to keep going when all I want to do is give up. Getting it makes me want to scream even when there isnt anything inside of me to scream with.
A lot of the time I feel like I just can't do this. People who say you should never say cant must not know what CHRONIC fatigue feels like. There are times when cant is possible. An odd use of word play, a bit profound, but true.
Where does the bitterness come from? Too many sleepless nights and sad days struggling to move. Just tears. Even when Im not crying.
I guess I wouldn't feel so upset if I didn't want to live.
APOLOGY: sorry this is so long for brain fog people. Just skim.
Didn't sleep AGAIN last night. Not sleeping is weird. Things take on an eerie sense of meaning that is hard to shake off. Especially, when it goes on and on.
I've been having inharmonious conversations with God. I really haven't been able to feel Him much for a long time. Quite sad. Please, no lectures on grace. Not now.
When you're not blazing tired you can focus on blessings. When you ARE blazing tired things tend to get hazy, as in not so clear. There's a lot of emotional numbness. Yet, there's pain. If you don't know what it's like to be numb and yet in pain then you probably aren't blazing tired.
Part of my problem is that thoughts keep creeping in about how Im not better than last year or the year before. In fact, I think I might be worse. There may be ebbing and flowing through this illness for some people but when the flowing is in flood-like proportions for what seems like an unendurable length of time it's just plain bad news.
Yes, there are those who are worse off than me. Yes, there are degenerative diseases that take a far greater toll. Yes, I GET IT! Dang it, I dont want to get it. Getting it hurts. Getting it makes me realize this is it. Getting it makes me have to keep going when all I want to do is give up. Getting it makes me want to scream even when there isnt anything inside of me to scream with.
A lot of the time I feel like I just can't do this. People who say you should never say cant must not know what CHRONIC fatigue feels like. There are times when cant is possible. An odd use of word play, a bit profound, but true.
Where does the bitterness come from? Too many sleepless nights and sad days struggling to move. Just tears. Even when Im not crying.
I guess I wouldn't feel so upset if I didn't want to live.
Be gracious, with yourself.
I too, have been feeling utterly hopeless recently. I feel trapped in my house, shut away from the world, and I struggle to find the motivation to even do the things I can. I just want it all to go away.
Do you know why you haven't been sleeping? Is it because your in pain? Or stressed? Or something else?
You are a super star, and you're doing really well. Can you do something nice for yourself today? Even if it's just having a bath with candles and relaxing music.
I'm a CFS long-timer, 18-ish years now, and my husband and I just 'celebrated' our 25th anniversary. I'm in the deepest funk I've been in for awhile, because being a couple of dork potatoes on the couch watching Criminal Minds DVDs was NOT what I had in mind for a 25th celebration. We were supposed to be at The Don Cesar on St. Pete Beach, Florida... But we got Olive Garden take-out while hoping the little bit of MSG they said might be in their pre-made recipes didn't give me a whopping headache, and watched DVDs.
*** sighs with misty eyes AGAIN ***
I really did think, that some kind of help or cure for CFS would have come along by now. Or at least a firm knowledge of what caused it so I wouldn't have to deal with skepticism or plain ignorance of the facts from 'normals'.
I totally get your beautifully written musings. And, be as bitter as you want. The chocolate that is best for us is on the dark and bitter side, is it not?
Weebs
Oh - and about having something more serious - NEVER compare yourself to those folks, because they have doctors WHO BELIEVE THEM. They never have to fear being dismissed.
Am so "out of it" today that I can barely function.
I can't is too lazy, too lazy to work...
Aargh!
This is our heritage. Pioneers, brave through it. Go for the goal. It's good and honest to work yourself to death.
Fibromyalgia breaks all the rules and nobody gets that.
But my insurance would not cover the provigil so for that reason and maybe some side effects that I can not recall at the moment, I stopped it.
Then they came out with Nuvigil...I have attempted that on and off until even this past Monday. Nuvigil is a longer acting Provigil and well, for me is not a good medicine I am sad to say. when it works, it works well but when I take it for a few days in a row I feel worse and believe it is either interacting with other meds I take or with my AI ( Adrenal Insufficiency) and I tend to get sicker.
As of yesterday I am back on Ritalin (10mg in the Am and 10mg at noon). I placed high hopes on this and well, am discouraged as I got my usual brain fog/fatigue around 11am yesterday and despite taking the second dose, came home and had to nap.
Maybe it will take a little time to work. I don;t know. I also tried Adderall and it was like I had taken nothing. We discussed Vyvanse so that is a possibility. I also know about Concerta so I know there are other meds to try...
My insurance is picky though and they will not cover a lot of these meds, especially those that are not used typically for CFS or other illnesses that they SHOULD in my opinion include in their studies!
Well, that is about all I can focus enough on to say at the moment..ugh...
Be well..and if you can not, try not to beat yourself up!