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...
CFS robs you of the energy to carry out simple daily functions, yet it requires a complex interaction of a variety of health care providers to treat it successfully. That is irony.
CFS takes your ability to process even the simplest bits of information, yet you practically have to earn a PhD to even understand what you are dealing with or how to deal with it. That is irony.
CFS slowly attacks and weakens all you major body systems. Yet for the most part you look perfectly healthy. That is irony.
CFS forces you to rely heavily on the medical community so that you can function at even the most basic level. Yet most of the medical community know very little about the illness. That is irony.
CFS robs you of family and friends, yet their presence and support is essential to your ability to recover or even survive this illness. That is irony.
CFS seems to attack an overwhelming number of people who were driven, high energy, constantly going .. and it turned them into shadows barely able to take care of their basic needs, never mind conquering the world. That is irony.
I saw a phrase today which really rang a bell .. the world understands death and the fear of death. The world does not understand an illness that robs you of who you are or ever dreamed of being, then traps you there...
That is my ultimate irony. I have never feared death. I have a deathly fear of disability. And I have CFS.
THAT ..is irony!
CFS takes your ability to process even the simplest bits of information, yet you practically have to earn a PhD to even understand what you are dealing with or how to deal with it. That is irony.
CFS slowly attacks and weakens all you major body systems. Yet for the most part you look perfectly healthy. That is irony.
CFS forces you to rely heavily on the medical community so that you can function at even the most basic level. Yet most of the medical community know very little about the illness. That is irony.
CFS robs you of family and friends, yet their presence and support is essential to your ability to recover or even survive this illness. That is irony.
CFS seems to attack an overwhelming number of people who were driven, high energy, constantly going .. and it turned them into shadows barely able to take care of their basic needs, never mind conquering the world. That is irony.
I saw a phrase today which really rang a bell .. the world understands death and the fear of death. The world does not understand an illness that robs you of who you are or ever dreamed of being, then traps you there...
That is my ultimate irony. I have never feared death. I have a deathly fear of disability. And I have CFS.
THAT ..is irony!
Everyone keeps talking about the Paleo Diet or this diet or that diet being able to help. I would be willing to try this diet if I had a cook that would fix my food for me. I am too tired and in a fog to even think about attempting such a complicated diet. I guess that is ironic too.
Here is another one, healing requires energy. Anything that we do to heal our bodies will invariably worsen our situation, at least for a time. So maybe we try something and we feel like crap so we drop it, when that was just the thing we needed to make us better.
That is irony.
We need each other, with this illness. It's just too sad for words! xo
Yes. To all of the ironies. Sad but true on all counts.
What to add? It took me 3 yrs. to get Medicare and then when
I did, my health care person has a sign up on the desk
"We will no longer be accepting Medicare for treatment in
this office."
And I might also add: Most any doctor I've seen who
does understand this illness is alternative and doesn't take
any insurance. And because they are 'special' they charge
way more than any 'normal' doctor would.
Most also would not sign a disability paper.
So, many people find themselves out of work, no
funds and struggling to figure out how to pay for life and
treatment when they're in the worst of health.
Let me add the words, 'bizarre' and heartless to the
medical system. Maybe 'ignorant of this illness would
be kinder' and neglect in research and educating the medical
community.
Thanks for letting me vent about this, but it came
up when I was reading your list..