After twenty one years of this disease, you'd think I wouldn't get upset at being unreliable, but I still do. I can't keep appointments. I can't keep plans. I can't do anything I ever want to do. I can't even answer the phone if someone is going to call me because I never know how I'll be.
It happened again today. I had someone who was going to call me back about getting better medical benefits. I ended up getting a POTS lightheaded attack and I had to lay down and that usually leads to me sleeping for hours. Missed the call back.
I can't agree to go with anyone anywhere ever because I usually have to cancel. It's a miracle when I do get to go out for a short while with a friend to dinner. But I'm usually very sick when I do it. Sometimes I'm better and I can enjoy it a bit, but the sensory input of a crowded restaurant usually kills me and keeps me from really enjoying it. And on days when I'm flared and sick and I push it to go, I don't enjoy going at all because I'm too ill to be there. But I do it so I don't stay in all the time.
I was raised to keep appointments and be reliable. And I was till I got sick. I was always there. If I said I'd do something, I did it. I wasn't raised to blow off going somewhere. And it's still really hard for me to cope with realizing that I am not reliable. Sometimes it makes me feel lower than dirt that I can't do things when I say I will. I never know day to day or even hour to hour how I will be. I might seem okay and then an hour later I'm very sick. And I can't change it or fix it. This is just how it is. And coping with it doesn't seem to get any easier.
It happened again today. I had someone who was going to call me back about getting better medical benefits. I ended up getting a POTS lightheaded attack and I had to lay down and that usually leads to me sleeping for hours. Missed the call back.
I can't agree to go with anyone anywhere ever because I usually have to cancel. It's a miracle when I do get to go out for a short while with a friend to dinner. But I'm usually very sick when I do it. Sometimes I'm better and I can enjoy it a bit, but the sensory input of a crowded restaurant usually kills me and keeps me from really enjoying it. And on days when I'm flared and sick and I push it to go, I don't enjoy going at all because I'm too ill to be there. But I do it so I don't stay in all the time.
I was raised to keep appointments and be reliable. And I was till I got sick. I was always there. If I said I'd do something, I did it. I wasn't raised to blow off going somewhere. And it's still really hard for me to cope with realizing that I am not reliable. Sometimes it makes me feel lower than dirt that I can't do things when I say I will. I never know day to day or even hour to hour how I will be. I might seem okay and then an hour later I'm very sick. And I can't change it or fix it. This is just how it is. And coping with it doesn't seem to get any easier.