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 am new in the group but as I read through some posts my eyes are filling with tears because I am not alone. I am sad, however, anyone else has to go through this experience. I am at work but I’m so exhausted that I am lying on a couch in my office. I have been consciously fighting The Fatigue (as I call it) for almost 4 years now. Probably longer without knowing it. I feel like I have lost time in some ways. I get better and I get worse again. I feel that I know most of the things that work best in healing me at this point, but I often lose hope due to the fact that this illness is affecting my career and holding me back financially. I often cannot pay my bills much less pay for treatments such as massage, acupuncture, and cranio-sacral therapy, which all work wonders. I am 33 and can not afford to move back out of my parents home, due to this. I have met a wonderful man, but I worry sometimes that he will leave because I cannot keep up with him. Sometimes it seems pointless to keep making plans and goals, because I keep falling short of them. I’ve been working on the same goals for a year. Plus, on the days I feel the lowest I often find myself trying to explain this invisible prison to people in my life... most of them just don’t understand. Does my story sound familiar to you? How do you keep your spirits up during the low points of this illness? I want to be productive and keep and grow my career,... I’m tired of these figurative tar pits.
In a way it's good that I'm no longer well enough to get out and about much, since it limits how many times I have to try to explain to new people just what's wrong with me and what I have to deal with.
My biggest coping mechanism is to lose myself in stories. I watch one of my favorite videos or DVDs or check out some new series on TV or that I've borrowed from the library. In the evenings I read in bed (very thankful that my brain fog is no longer so bad that I can't concentrate well enough to read). I'm also a writer, hoping one day to get something published and I lose myself in the story I'm working on at the moment too.
Back when I wasn't as bad, I used to find a gentle walk along the beach (or before I moved close to the coast, along a river) relaxing. I also used to do craft a lot and that gave me a feeling of accomplishment - as well as items I could give as presents or sell.
I don't know if any of these things will be helpful to you, since we are all so different from each other. I hope you soon start to feel better again. In the meantime, rest as much as you can and be kind to yourself.
I have coped over the years by just keeping hope that each new treatment will help in some way. I feel like I am a detective investigating a great mystery. I focus on always learning something new to help me understand my body. How I wish there had been groups like this, as well as Phoenix Rising, back then. I only just discovered online groups last year .while panicking desperately in a relapse, and it has saved my life..mentally. I was ready to take every RX drug I'd saved up...not so much from the physical symptoms but just the emptiness and isolation that being ill for so many years has caused. The emotional support and medical knowledge in these groups is amazing.
We also have a phone support group via conference call every Saturday night that is wonderful. So wonderful to hear voices and have real time conversation with others. We have a Facebook page called "CFS/ me phone support group" I think and the call info is on there if you ever want to join in.
Hang in there and don't lose hope. So many folks are getting help with new meds, and at earlier stages in the disease so folks have a better chance of recovery. If there's only one thing that is constant about CFS, is that it is unpredictable and remission and good times can always be right around the corner. It has required me to call on a spiritual resource, a faith, that I am grateful for and perhaps would not have developed if I hadnt gotten ill. And always, thank gooodness for Netflix, the internet, and my iPad! ....and my down pillows and bamboo sheets! I still have episodes of grief over the changes, but it helps to recognize that we are just moving into a " new normal"..with its own source of joys, rewards, talents and new perspectives of the world and of ourselves. Many blessings to you.
The most frustrating thing is when I really go out of my way to do something, like seeing a friend and have to run on low energy for the next few days after, especially because explaining how much of a big deal it is and how much energy it takes is hard. Even when I do explain I just don't feel fully understood.
There are times when I feel helpless, when I'm just lying there, exhausted and my thoughts are almost incoherent I honestly feel so trapped. I guess my way of coping is to let it pass. There are lots of things I enjoy in my day to day life like going for a small walk, reading half an hour of a book and writing and its the routine (That is very flexible, with lots of rest in between) which keeps me in a good mood and helps the most. When I'm low on energy I have to take lots of breaks otherwise I'm not able to focus and get really upset if I'm unable to stick to the routine.
Try not to be hard on yourself, I know this is easier said than done but I think it is the root of a lot of our problems. Best wishes.