Still Learning to Say No

[Carrigon]

I've now taken to avoiding people who are sort of friends, but who always ask you to do something. I'm not well enough. I have one neighbor in my building who is like that. She doesn't understand that I'm not well enough to drive her anywhere. And she doesn't take no for an answer. Like anything I say, she just doesn't get it and says she'll call me in a few days about driving her someplace. And now I just avoid her.

People just don't understand that just because I still have a car and can go out like twice a month, that doesn't mean I'm well enough to drive anyone anywhere. I barely make it to the store and back and I'm usually dead when I come home. And I don't want the responsibility of anyone else in my car. I don't think I am well enough to drive much. And when I do drive, I have to concentrate a hundred times more than a healthy person does. And gas is expensive now, too.

Anyone else go through that, where people keep expecting you to do stuff and you can't?

 

[dsdmom]

I completely understand. I feel the same way...in fact I am sitting here procrastinating emailing someone who asked me to get together. I have a preschooler and of course other moms all do play dates and even though some people know that I have some health issues, they just don't get it. And they aren't being mean, in fact quite the opposite - trying to invite us to do something. For instance right now someone asked me to go to the zoo w/ them & their kids. That sounds fantastic, right? But how can I make any sort of plans ahead of time? And people don't get that. And the zoo? That is a major undertaking - a ton of walking. I feel like I am throwing away opportunities for my daughter to have fun and for me to have friends. So I feel like I just push people away. Tons of guilt about that re: my daughter by the way.

 

[Enid]

Yes its all too familiar with you both (though I have no "obligations" now). I cannot plan ahead either and must take each day as it comes. Lots of disappointments involved - family, friends etc. when one has to say "no can do". But I'm sure if they are family and real friends they would wish first for your own health restored (if old enough to understand). Or is that asking too much.

 

[Tulip]

I used to get asked to babysit 3 kids regularly, I did it once on a good day, for 2 hrs and it almost killed me, from then on I had to say no. But she just didn't get why I couldn't do it and kept asking.

dsdmom, I can totally relate. I am a single mum with a 7 yr old and all his friends are into sports and weekend activities, they and his teacher keep asking why he doesn't do any. I cant drive due to this illness and putting him in those sports means driving to different locations every weekend, most over an hour away. He is missing out and so am I, but what can you do?.

 

[caledonia]

To Carrigon, trying saying something like "I'm sorry but I don't feel well enough to do that". And keep repeating it until she gets the message. Or put on your answering machine, screen your calls and don't pick up if she calls.

To the others - my mom had CFS the whole time I was growing up. This was starting in 1969. Nobody knew what was wrong with her, just that she couldn't do things anymore. I can barely remember doing some ballet lessons, then everything stopped. We were told that if we wanted to play sports we had to find our own way there. Now this was the 70's so you could ride your bike up to the park to play games if you wanted to. I decided I didn't want to do softball bad enough to do that.

My mom showed us how to make our own breakfast and lunch so she didn't have to (there were 5 kids). We all had our own chores. Mainly we went outside and played. The kids on our street organized our own impromptu baseball and football games. Plus we made up a lot of other games, built forts and treehouses and so on. My dad took us swimming at the pool after work.

So basically we were left to our own devices and were able to use our own creativity and imaginations to play and have fun, and I don't feel deprived at all.

I understand that these are different times and people now like to overschedule their kids with all kinds of activities and maybe your neighborhood isn't as idyllic for playing outside as mine seems to have been, but I would look at it as an opportunity to have a more relaxed lifestyle that isn't totally overscheduled and stressful. Probably save some money too.

As for the zoo, it seems like you could rent a scooter for the day. Maybe the zoo even has scooters available like a grocery store?

 

[ixchelkali]

I don't know if this will be helpful to anyone else, but before I became essentially housebound, when I could still sometimes go on an outing, instead of saying yes I would say something like: I would love to, and I will try to make it, but you need to understand that because of my illness, all plans must be tentative. Because my condition fluctuates, I never know ahead of time if I will be well enough. If that kind of flexibility will work with your plans, I accept with thanks. (Yes, I really said stuff like that.) Occasionally someone would say they needed to know definitely, and then I'd say "then I'm afraid I'll have to say no," but most times people would say that was okay. And then if it looked like I wasn't going to be well enough, I'd let them know as early as possible. Some people didn't like it and stopped inviting me, but others were okay with it. Some people would say "I hope you can make it. If you get to feeling better, just show up." Others, I believe, began to assume I wouldn't be able to make it and stopped asking. I expect there were a few who thought I chose not to go or was making an excuse or being rude, but as no one said so to my face, I don't know.

 

[Carrigon]

I can never make real plans. I never know from even hour to hour how I will be. I can be dying in the morning and suddenly feel well enough for a short outing in the afternoon. I just never know. And when I'm forced to be someplace like with an appointment, that just makes the stress a thousand times worse because I don't know how I will be.

 

[ixchelkali]

I can never make real plans. I never know from even hour to hour how I will be. I can be dying in the morning and suddenly feel well enough for a short outing in the afternoon. I just never know. And when I'm forced to be someplace like with an appointment, that just makes the stress a thousand times worse because I don't know how I will be.

I know: me, too. That's why my mantra is "all plans are tentative." Doctor's appointments are the only exception: those I avoid when I can, and if I can't, well, then I go and deal with the crash afterwards. I can't even make an appointment to get my hair cut; on the rare occasions I'm well enough, I go to one of those walk-in-and-take-your-chances places. Sucks, doesn't it? But I've learned to just say "Oh, well" (meaning, it can't be helped so there's no use stewing about it). And then I come here to the forum and realize that there are plenty of bed-bound patients who would be glad to change places with me, and I count my blessings.