Tuesday, March 2, 2010
What does CFS feel like?
For people who don’t have CFS or don’t know much bout it … this info is for you!!
Chronic fatigue Syndrome is such a misleading name for this illness, which I guess is why it is also known as ME (myalgic encephalomyelitis) and more recently CFIDS (chronic fatigue and immune dysfunction syndrome).
When you use the term ‘fatigue’ many people often get the wrong idea. I remember telling a work colleague that I had CFS and her response was ‘Oh I had that once and I was tired for a whole month’.
WRONG!!! Chronic fatigue and feeling tired are 2 different things altogether. Tired is when you have had a busy day and you’d like to have a nana nap in the afternoon. Chronic fatigue is when you cannot make it all the way through having a shower without having to sit down and rest and then afterwards feeling like you have set a new record for running a marathon!
Fatigue is of course only one symptom associated with this illness. There is huge list of symptoms, most people have several but not all on the list. The ones I have daily are fatigue, extreme muscle weakness, dizziness, lack of balance, random muscle and joint pain, brain fog, lack of concentration, memory loss, problems with speech, low grade fever. You can see why the term chronic fatigue can be frustrating and invalidating to someone who suffers all these symptoms.
To try and sum up how this makes you feel is kinda difficult but I read something yesterday which I thought was pretty apt. A Dr who deals with this stuff every day said that people who have severe CFS feel the same way that someone with AIDS does about 2 months before they die. I have personally spent time with people dying with AIDS and I believe this statement is probably quite accurate. Sad but true!
Of course people suffer with CFS in varying degrees. Some can keep working, some cannot, some cannot leave their homes, some cannot even leave their beds!
I am currently in the ‘cannot leave home’ category. I go out only for Dr’s appointments etc and that is with the help of family of friends.
I know this all sounds totally hopeless and just dreadful but I count myself lucky. There are people far worse than me and I at least am not suffering depression like so many others! I read the other day that up to 20% of CFS sufferers commit suicide. I am fortunate not to feel so hopeless ……
Who knows what’s around the corner, right?!