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 experienced a severe fatigue crash in late December and have been bedridden ever since. This was even worse than when I first became ill 4 years ago. All I do now is watch TV or listen to music, get up for the bathroom or sitting shower (not daily), and eat in bed. Sometimes I am able to read later in the evening. Sleep is a problem, so I do use medication. I have tried going without it, but either way I feel like I never slept at all, so I lay in bed until around 2 p.m. before making myself switch to the bedroom with a TV. Before this I was having a lot of Fibro pain (especially in my back and legs), but was able to "putz" around the house doing small things just to feel useful. The pain lessened a bit being in bed so long, but the fatigue is so miserable, and I am really concerned about more deconditioning. Anxiety increased during this setback because I just worry about everything as I lay in bed trying to rest. I also have a list of the other symptoms that come and go. I find myself crying a lot again as this is so discouraging! I really thought I had made peace with my illnesses. WHAT DOES EVERYONE ELSE DO DURING A NEW CRASH?
Crashes, especially extended ones are tough. I try to work a lot on my mental state during these crashes. I think we are more subject to depression when the body is weakened, its much harder to find joy an be positive. Mostly I just allow myself to rest and work on not getting too stressed out by the process. I forgive myself for all the things I cant do. Right now I keep the tv on around the clock. The noise interrupts that ever-thinking thing that my brain wants to do. Once the tv goes off all the anxieties pile on and I drive myself crazy. So find what distracts you, is it music or a hobby you can still manage, or talking to someone?
And yes when all else fails, I take sleep aids to knock myself out. Never more than one dose per day but even a few hours of reprieve is good.
Hope the wave breaks soon and you start feeling better.
I try to avoid crashes at all costs. I am also deconditioned and can't afford to get any weaker. Signals aren't sent between my legs, spine and brain correctly which has really weakened my lower back and legs.
I tried to adapt what I can to take care of myself the best I can. I try to stay active as much as I can. My last idea was to do bed exercises or stretches. I kept a journal to list what I did and how I felt over the next couple days because I was so tired of doing a bit too much and paying for it. Last year when I got strong enough, I walked the length of the living room 1 day, rested and did range of motion exercises another day. I could not do very much at all and had to slowly increase my activity. I try to rest off and on throughout the day. I keep reminding myself that this will pass and I will feel better. In the meantime, I would distract myself with things I enjoy doing to keep my emotions more in check. What do you love to do? How can you adapt this so you can enjoy it now?