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.
I MAY try to see if my doctor will write the rx for BRAND NAME only and try that and see if brand name makes any difference. I do not usually worry that generics are ineffective but at this point am wondering since the adderall did nothing either and I just find it hard to believe that my body is that resilient to these meds!
We also discussed Vyvanse, so we have that option to look at. Am just losing hope with all of these meds.
Also what we eat can causes more work (= stress) to our digestive system. He goes into optimal foods to eat to allow our bodies the least stress and the most energy, which is important for an endurance athlete to consider. Of course this applies to me as well trying to conserve my energy to make it through the day. Side note: disease hates an alkaline environment.
Stronger muscles actually use less energy allowing more energy to be available during the day. Exercising to create strong muscles expends energy but not all exercise gives the same return on investment. He goes into this very logically almost like a financial planner.
If anyone sees this in the bookstore, it might be worth checking out. I'm not explaining this nearly as well as he does and being in front of this computer too long makes my head tired, but I'm writing as I see there are things that I can do that I haven't been doing to increase my endurance (i.e. energy throughout the day) and in the hope that this might be helpful to someone else as well.
I've heard about Provigil from another cite and definitely want to try it out. I was lucky enough to find a doctor in DC who actually believes in CFS and works with it. I have been unsuccessful so far, but plan on talking to him about Provigil.
It's difficult being a 21-yr-old with CFS and being too tired to just go out of the house. No wonder I feel like I have no good friends.... :( I'm just too tired to do anything.
Thanks for listening. I think we all have similar types of guilt feelings as well. I have two daughters who are teenagers and I just didn't ever have the energy to be any kind of "super mom" to them. I didn't help out much at school and I've never been a great cook. I probably would've have disciplined them better if I hadn't been so tired all the time.
Thanks for listening.
Margo