Karen

I hate feeling this way... I hate being sick, and sometimes I just get so tired of not being 'normal'.  If I do anything out of the ordinary in my routine, my body is all out of whack for weeks.  I know that I do a lot better than a lot of people with CFIDS, and I try to be grateful for that... A lot of people with the illness can barely get out of bed, much less hold down a full-time job.  But if I don't stick to my routine - get up, go to work, come home and do virtually nothing, then go to bed - during the week, then I'm screwed.  If I don't use my weekends to relax, then I'm screwed.  The weekend at my sister's wiped me out, and I'm still feeling lousy from it... I just hate it.

What is CFIDS?  For those curious, it stands for Chronic Fatigue and Immune Dysfunction Syndrome.  It's more commonly known as CFS/Chronic Fatigue Syndrome, but that's the full official name, and I've had it for thirteen years.  I was very sick for about the first three years.  I was on homebound for part of eighth grade and was forced to do my high school work entirely by correspondance (thank you, Texas Tech for having a TEA approved program that allowed me to do that).  Because I'd been out of a classroom for five years (age 13 to 18) by the time I finished my high school work, I opted not to take the scholarship money from Baylor or TCU and went to a local college for the first two years before actually going away to TLU, which gave me the best scholarship they had for transfer students when I went there anyway... I did okay, but sometimes... I came close to a relapse last year after moving, going out of state for a wedding... And working a job that required me to leave my apartment at 5:30 in the morning and not get home again for more than twelve hours.  It just about killed me, and then they wanted me working six days a week?  No thanks... I ended up having a couple of months between jobs, which was really good for me healthwise.  I felt better than I had in years, but now... I've felt lousy for the past week and a half.  And as much as I like to think I deal pretty well with my CFIDS... I'm tired of the headaches (well, I actually get full-blown migraines), I'm tired of being tired all the time, I'm tired of the sore throats, running a fever for no reason, tired of the joint pain... I'm tired of idiots that laugh and say 'well I'm tired all the time, so I must have it, too.'  They live their normal lives and don't have to worry that doing one extra thing out of the ordinary is going to throw their bodies out of whack for a month.  They don't feel exhausted after doing their grocery shopping.  I'm tired of doctors that want to test me for lupus and arthritis and fibromyalgia and a dozen other things for the millionth time, ruling all of those out before they'll believe my diagnosis.  Honestly, I've probably been through a dozen doctors in the past thirteen years.  There was one that tried to put me on diet pills to give me more energy (I'm 5'3" and weighed maybe 110 pounds at the time), and then the one that wanted to put me on a medication that had never been tested on someone under the age of 18 (I was fifteen at the time.)  And speaking of medications... Another fun thing with CFIDS - a lot of people that have it are very sensitive to medications and can only take certain things.  You're also more inclined to get sick because your immune system, while it works, is still a bit out of whack.  (There are times when I have practically lived off of vitamin C.)  And then we'll add the fact that I've always had sleeping problems... They're just worse with CFIDS.  (The majority of people with CFIDS suffer from some type of sleep disorder.  You ever heard the phrase 'too tired to sleep'?  I've been there many times.)

Okay, rant over.  I don't feel better now, not physically, but at least I got it off my chest.