I’ve been sick with ME/CFS for almost 20 years and I am beginning to believe that you never fully learn how to deal with being chronically ill. I think I have come a long way from where I used to be but I’m still not where I want to be. In my own opinion, living with ME/CFS is like being handed a life sentence for a crime I didn’t commit. I try my best to look at the bright side and to be positive but there are days when I feel so totally drained and miserable that nothing can make me feel emotionally positive.
When I decided to try working again a year ago, I felt emotionally better because the time away from home and the time around other people gave me something to look forward to. It wasn’t long before I realized, however, that physically my body just isn’t able to handle it. As much as I want to be out there working, I had to cut back to one day a week – 4 – 5 hours – and that’s all I can work.
The pefectionist, type-A part of me makes myself sicker because of this constant guilt I haven’t been able to get past. I feel guilty because I can’t be out there working every day. I feel guilty because I can’t volunteer for a lot of the events at my son’s school. I feel guilty because I have to miss his practices and games sometimes. I know intellectually that I should never feel less than because I’m chronically sick, but I do feel like that a lot of the time.
The past couple of weeks have been really rough for me because of my ME/CFS flaring and those steps backwards are starting to add up more than the steps forward. I try my best not to overdo it, but even when I don’t overdo it, I still flare so bad some days you would think I ran a marathon or cleaned 10 houses. Then when I flare, I start to fear doing anything because I’m afraid of getting worse. It’s a constant cycle and a constant battle that some days, like today, I just get tired of fighting.
This time of year is just so difficult for me. I have to start taking anti-depressants and everything just to get me through the season.