Not a lot of people understand this syndrome, and scoff at it. I look fine, I look normal and most of the time I can function like a normal person. I have episodes. Not everyone with CFS has episodes, there are many people who struggle with it for most of their lives, on a day to day basis. I am in the middle of an episode right now. There is no warning on when it will strike, or how long it will last or how bad it will be. There are many different symptoms for CFS also, but the most common factor is the fatigue. This isn't the normal, I haven't slept much so I'm tired, fatigue. The fatigue I feel is not just physical but mental also. I feel like I've been awake and function for days, if not a week or more with very little to no sleep at all. Which isn't true. I've been going to bed for the past week around 10:30-11pm and waking up around 7-7:30am. I have been sleeping long enough, but for whatever reason my body is not responding to that sleep the way it's supposed to. I made dinner last night, lasagna. It took me 3 hours to make it. I'll probably be paying for it for days for even attempting standing for that long, and certainly for the brain power of watching hulu, and trying to cook at the same time.
I was diagnosed with CFS at the age of 15 years old. I got sick, I think it was the end of October of my freshman year of high school. I couldn't stand for more than 5 minutes or I would get light headed and dizzy. I would have nausea accompanied by migraines at least 3 days a week.I was poked, prodded, scanned, examined and no one could come up with anything. One neurologist even tried to tell my Mom that I was making it all up. My pediatrician finally managed to accumulate all my symptoms and found that I fit CFS almost perfectly, and thus I was diagnosed. That I believe was in January. I was not better though, I struggled every day, my bones felt tired, moving around, just to walk to the bathroom was exhausting. I sleep a lot those months, and honestly most of it was a blur, and I would wake up exhausted. Sleeping took too much energy it seemed. I didn't go out, except to go to church, and I did school with the county over the telephone. I broke up with my husband, who I had been dating for a few months because it didn't seem fair to him to have a girlfriend he couldn't actually go out with.
By the summer I could do a little more. CFS is easier to deal with, and improves easier if you're young than if it strikes while you're older. I have only had a few episodes of it since that time, and I was affected by it for about 8 months. My later episodes really only lasted about a month or two. Nothing helps it, and I just have to try and do my best during the day. It's a very frustrating feeling knowing that you're unable to move your body, or do things with your kids because of the exhaustion. People call you lazy, and they don't believe that you're really affected by anything. However, waking up exhausted, after sleeping for 9 hours, is NOT normal, and when it happens day after day, it's starts to really take it's toll on you.
This affliction affects many people who may not even know it, and it's hard. I hope I can bring some understanding to people who may have had no idea about this syndrome, or who have maybe heard of it, but knew nothing about it.