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...
I've been on so many treatments over the years. I spend every penny I earn and more, as well as money from my parents to pay for these treatments. Yet I still feel the same as when I started. Actually worse. Is there anything more to life than funding my disease? I feel I can't experience anything physically or emotionally until I get some sort of results. I think I will run out of money first. I am certainly running out of youth. I don't have kids, a girlfriend, or even friends anymore. I don't know what I'm living for, or even fighting for.
And yes, I'm seeing a therapist, and she's fucking useless. Everyone tries to treat me like a depression patient, like it's my state of mind that's the problem. I'm just sick of this prison. I want to have a life again so bad, but I feel like my odds are better killing myself in hopes for a reincarnation or just a better life in the next world (hopefully there is one). Do you guys find yourselves trying to prepare yourselves mentally for a suicide, or trying to set a limit as to when enough is enough?
And yes, I'm seeing a therapist, and she's fucking useless. Everyone tries to treat me like a depression patient, like it's my state of mind that's the problem. I'm just sick of this prison. I want to have a life again so bad, but I feel like my odds are better killing myself in hopes for a reincarnation or just a better life in the next world (hopefully there is one). Do you guys find yourselves trying to prepare yourselves mentally for a suicide, or trying to set a limit as to when enough is enough?
That was a sad terrible time for me. But after that time, I found a specialist in Denver and things began to slowly get better.
It is a horrible disease. I am so sorry. I want to offer you hope of getting better. There are things that have worked for me and some things that have not. Each journey is different.
Namaste
Sun
I read, play games, get plenty of time to myself, some time with others, watch Netflix and videos as I please, play out my own little world in sims 2, I write, lots of stuff. Now work doesn't get in the way.
This is my secret upside to having cfs. For a long time anything close to this kind of thinking made me feel guilty and bad. Now I try to embrace it instead. Feeling good about my life like it is makes me more functional, lower symptoms, altogether a little better. Feeling bad about not being able to earn $ and buy things we need and want actually causes an increase in symptoms. This is easier to see if you can remember some of your best and worst periods of how you feel about having current life since you have had cfs.
I truly do not think that this is all psychological. Stress causes crashes too. I thought I behaved badly at a party (accidently making myself the center of attention) and for a solid week I needed extra sleep, extra naps, and struggled to walk across a room by myself. I was so worried it was permanent - but it was just a crash. It's just a different way of overdoing things.
The CDC says it's not fatal, but they also admit that they don't have any way of actually knowing that...since they don't track us in any way. People who have tried analyzing the question of mortality in an informal way have concluded that ME/CFS has a relatively high mortality rate. Like HIV/AIDS, we succumb to respiratory illness or lymphoma.
For a while, the CDC insisted that HIV/AIDS was not fatal for the very same reasons that ME/CFS is supposedly not fatal. No one actually dies from these two diseases, they succumb to "comorbid" conditions like pneumonia.
I don't mean to alarm anyone, but I do believe we prefer to know the reality of our situation. One could also argue that those of us who have died by suicide should be added to the count. If the illness makes us so miserable and depressed that we kill ourselves, is that because of the disease or is that our weakness? I vote for the disease being the cause of the suicides...as well as the deaths from respiratory illness and lymphoma.
Feel free to disagree, I don't pretend to know the answers to these troubling questions. This is just what I've concluded about things. I think it's wrong to say that MS, for example, has a certain mortality rate, and ME does not. I think that they are both potentially fatal at similar rates.