I feel like I have a good, strong marriage and for the most part my husband has been supportive of everything I have had to go through with ME/CFS & Fibromyalgia. But even the strongest of marriages are hit at times by the effects of these illnesses and my marriage just experienced one of those hiccups over the weekend. My work schedule has been all messed up again because there is another new manager who has to get used to my crazy work routine and the few hours that I can work. It seems like once a manager finally gets it down, that one leaves and then another one comes in and I’m having to go in every week and tell them my schedule isn’t right.
The other managers knew not to schedule me 3 days in a row because it always causes a flare but I can’t seem to get the new boss to remember this. I keep talking to him about it but by the time the next schedule rolls out, my hours still aren’t right – I either have too many or 3 days in a row, or something else is wrong.
I get torn because I like working even though it is only supposed to be 2 days a week – it is the one thing in my life that makes me feel semi-normal. I don’t want to lose that. But I also understand where my husband is coming from also because he is worried about my health, which I am also, and he doesn’t want to see me end up bedridden for months.
I ended up going to work upset on Saturday and I was crying because my husband and I had been arguing before I left. I went in early to talk to my manager about my schedule and I ended up very upset my entire four-hour work shift because my husband and I had a little spat over the phone about 5 minutes before my work shift started also. I called him to tell him I had talked with the boss and they were going to work with me (hubby was also upset about me working every Sunday) and he had made the comment, “Well, I’m the one that has to live with you. When you have to work like this, you are miserable and you make us miserable.” I understand where he was coming from but it wasn’t exactly the best way to tell me something like that five minutes before I have to start working. I ended up messing up my entire shift, making stupid mistakes and I couldn’t think and I felt terrible – physically and emotionally. The only thing I could think about the entire shift was, ” I make my family miserable”.
Now all this week I’ve been having a flare with blisters on my tongue to boot so I think it is a combination of working 3 days in a row, plus the stress of dealing with my husband being upset, and trying to get my schedule straightened out – again. Stress is a big no-no for CFS & Fibromyalgia sufferers. Just a little bit of stress can push us over the edge and make a minor flare a week long affair.
I don’t want to lose the one thing I have that makes me feel normal. I know to healthy people it sounds kind of funny because they usually say that I can work for them and they will stay home for me. But when you can’t do something for a long time, you learn to appreciate the little things you can do. I always loved working, enjoyed working and felt like I was doing something important when I was working. I like having those few hours a week that I can feel that. I don’t think there is anything wrong with that. My husband needs to understand that just because I’m sick doesn’t mean that I can’t have anything else.