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...
Some random thoughts about CFS/ME.
First, this background, I’ve been a sufferer since 1997, and am a high functioning CFS’er. I can usually work a solid 2 days in a row before I get a crash, but I always end up getting a crash. I’m seldom bedridden, but definitely have major crashes in the manner we’re all familiar with, the post-exertional malaise.
When people who aren’t sufferers think about what chronic fatigue must be like, I think sometimes they only think of the physical aspect.
What I’ve learned through 20 hard years is how much energy touches on other aspects of a person, that one wouldn’t necessarily think of as physical.
For example, having your energy and energy reserves seriously depleted “reduces” your personality. Not sure how else to say that. But I definitely feel that when you don’t have adequate energy, something about your personality fades.
Also, tell me if I’m right on this, but emotions are harder to “uncover.” This is even harder to describe, but sometimes it’s as though I can tell there’s an emotion below the surface that wants to come out, but I don’t have the energy to “reach down” and pull it up.
Last one I’ll note, and I think this might be more obvious, but creativity is much harder to come by. I think once your brain has started to accept the limitations on your energy, it deliberately keeps some ideas that are too strenuous, etc, keeps them out of reach.
Many of you are lucky to have relatives and friends who can really sympathize with the fatigue. But I think many are unaware of these other things that eventually become lacking in our lives, and being so aware of their absence starts to make you greive or resent those losses as well.
Thinking of all of you who are suffering, someday we'll be understood, and our illness will be seen as real. ~~
The emotional side, for me at least, I think is related to the depression I suffer because of the disability caused by CFS. I deliberately avoid watching or reading anything too emotional - especially anything "tearful" (whether happy or sad). I just can't spare the energy.
Creativity has always been a big part of me and I am now managing to tap into that a bit again with careful management, but some of my worst depression came when I was unable to do anything at all along those lines.
I haven't been able to drive regularly in twelve years. The number of times I have, could be counted with my fingers. Fortunately, I have a compassionate husband who has stuck by me. He witnessed the collapse of my body after contracting Glandular Fever. To this day it all feels like some bad dream but I'm awake and it's all too real.
I have difficulty suppressing my emotions and they erupt frequently. I cry so easily. I have low self esteem and lack confidence and have become rather fearful due to the lack of strength in my physical body and the numerous other debilitating symptoms that accompany CFS. What were once simple every day tasks have been difficult ones for too long now. I so often feel like a failure. I am forever saying sorry to my family as I really do feel I burden them. Sorry ...this is sounding negative and a self pity party.
On a more positive note, I have loved supporting others here on DS. When you yourself are suffering you understand the suffering of others and compassion becomes a treasure. It gives you purpose and brings joy to your heart. It takes the focus away from yourself. DS has been a gift from God.
Today I ventured out with my husband to a shopping centre. I was really struggling to hold up. Very weak and shaky, despite holding onto my cool little walker. I started to feel disappointed and frustrated and was self absorbed. Then three times in a row, I saw people in wheelchairs who were suffering with dreadful diseases. One poor young girl was extremely retarded. I was upright and walking. I could see and I could speak and in that moment I felt gratitude for what I do have.
Acceptance of what is ,and gratitude for so many things taken for granted, is my lesson to learn. My journey like many others, has been a long and difficult one, However despite the many obstacles, I will not be defeated. I understand how you feel 2Bfree1day. Your name is uplifting...sounds so good
Love and healing to all.