shakey and weak

[billoddie]

Neil!...Unfortunately this is "normal". Its part of the ever changing chameleon that CFS is. It will pass...normally to be replaced by some other weird thing. (not always) Niaholt is right...it helps. A very simple thing also to do is this...lie down...simply become aware of the temperature of your breath as it goes past the nostrils on the in and out breath. Thats it! It works too. It physically turns the body back to parasympathetic nervous...you dont have to "think" your self calm.
Unfortunately what you are experiencing is the ever changing face of CFS. the first few years are the worst generally. Then maybe starts to ease up. ( a little)

[neil25]

Thanks for your reply. It's a bit of relief to know its just my CFS. Yeah its very weird because its kind of settled down just now. My problem at the moment is cramping in the fingers. I'm at uni part time and it's vital I can type for long periods but I hardly been able to type much. I hope this gets better as I have a 15,000 word dissertation to write not much fun when my fingers are so stiff and cramp and painful.

[billoddie]

It sounds like you are trying to live your life like me...and suffer under the weight of getting by. Somedays only just. A friend of mine is having chemo...everyone understands. Mention CFS, and NO IDEA. People dont get it that this thing NEVER QUITS. Very very frustrating and irritating.

[Wynton]

A friend of mine is having chemo...everyone understands. Mention CFS, and NO IDEA. People dont get it that this thing NEVER QUITS. Very very frustrating and irritating.

Yeah my parents have been in the habit of comparing my situation to that of someone undergoing chemo. That and MS because 2 of my cousins have it. They say, "look at all they can do with their MS, see, you need to be a fighter like them"... I really wish people wouldn't talk about stuff that they didn't know about - I certainly don't now that I have this!

[neil25]

Hi billoddie

your right some days im only just getting by. Its really tough but i don't see what choice I have. I can be in bed most of the day or push through this horrible illness and achieve something like a degree. Its so hard but im a big achiever and don't want to give up. All of my friends have nice cars, big houses, degrees and travel the world. I want something out of life.

[billoddie]

The whole CFS paradigm is like nothing else. When i am under "attack" it is like who I am just disappears. It seems with a "normal" illness you can "fight it". On bad days i cant even speak let alone fight. The words to accurately and adequately describe the WHOLE EXPERIENCE have not been invented.
PS Neil...unfortunately the whole achieving thing is a hallmark of CFS. teitalbaum has an interesteing dissertation on the existentialism of CFS in his book and how it relates to this "go getter mentality". THis mentality, by the way, can manifest in many ways. For me it was ability to suffer in the hard pain of sport and training, as well as drink/take drugs at huge levels...and to be extreme in many facets of life.

[neil25]

Yeah i know how you feel I've been there on some days where I cant speak or even move my arm. It's hard for others to understand our level of suffering. Yeah I hear that many people with CFS are big achievers. However there are also a lot of people who don't have CFS who push themselves and are also big achievers. I think its quite natural for a lot of people to be go getters it's certainly better than achieving little.

[billoddie]

I dont know where you are at, but a WILLINGNESS to open up to a spiritual (not religious) awakening can (and often does) re contextualize the whole "achievement" paradigm. The mind has many agendas and things are often not as they seem. CFS, for all its horrible suffering, can be an awesome tool for spiritual growth.
Hang in there.

[neil25]

Hi billoddie.

I do try to see the positive side of cfs like being strict with exercise, eating healthy ect. What always gets me down is when my physical symptoms are really bad and almost unbearable its at these times I cannot see the positive side to it.

[billoddie]

Yes...in that space; forget it. I was just explaining to my girlfriend that when an "attack" is on, it's like "I" have been hijacked...simply taken over...I no longer exist. I'm in there but just smashed and crushed under a neverending relentless enemy that is totally merciless. In those times, its off to bed. Forget trying to be positive...too much energy. IF i can be bothered, the "Stops" MIGHT peel it back. To be honest, I am tired of "doing" stops...just another thing to "do".