Twice a year my husband and I are sponsors for a toy and train show that is held locally. Both of these shows are fundraisers for the local train club my husband started about 12 years ago. When we first started doing these shows 10 years ago, I told my husband that I would try my best to help but I was only going to be responsible for making sure that all of the advertising, contracts, flyers, etc. were taken care of and I would help on the day of the show by working in the kitchen. I told him that if he and the club decided to do more than one show a year, he was on his own and I would only help with the kitchen on the day of the show.
Well, he took on the job of doing a second show and that show was this past weekend and I am still suffering. I have tried to tell him over and over that physically these shows are just too hard on me and every year I say that I am not helping anymore, but somehow he manages to drag me into it every time. Even though he has always been very supportive, he still doesn’t get this illness and he thinks that it’s just a normal tired. He thinks that because these shows are only twice a year it’s not that big of a deal but for me it is.
I had to get up at 5 a.m. on Sunday morning so that I could be ready and have me and our son over at the show by 6 a.m. to get the kitchen ready, coffee going and everything else that needs done until my help gets there. As everyone knows, I don’t sleep well at night and I only had about 2 1/2 hours of sleep the night before. I was working at the show from 6 a.m. until 3 p.m. I came home totally exhausted, in tons of pain that extra pain pills didn’t help, and I still haven’t recovered and I still haven’t slept much.
I tried to explain to him that for normal people, it’s only twice a year but for someone with my health problems, I have very few good days as it is. These long days just add even more bad days to my weeks and I don’t know how many more bad days I can deal with. I can’t go to bed like him, get a good night’s sleep, and wake up the next day only slightly tired from the extra work. It’s very damaging to me and I’m going to have to have a long talk with him and just put my foot down and tell him that he will have to find someone else to come in at 6 a.m. to work at this second show. The reason I cave in every year is because my parents, sister and uncle are the other kitchen workers and I don’t want them stuck with coming in that early. I’m going to tell him that he is going to have to find someone from the club to come in early because it’s not my problem or my parent’s problem.
While I am supportive of his involvement with the club and it is an important hobby to him, it’s not worth risking my health for and I know he also has trouble understanding my viewpoint on this. My husband is someone who gets very involved in things and is one to volunteer and do whatever he can for whatever cause he’s interested in. To him it is worth it to be extra tired because it’s for a good cause. I don’t feel that way. I am always thinking about how activities and volunteering are going to affect my health and to some that may sound selfish but that’s how I survive. When you are as sick as I am with ME/CFS, Fibromyalgia or any chronic illness, you have to put yourself first in order to make it through the days or weeks.
My husband and I are taking a few days next week to ourselves and going away so I’m going to wait until then to talk to him about it. We will be alone and I think I will be able to get through to him better since we’ll be away from the home distractions. We’ll see.