We’ve ALL heard this one, “But you don’t look sick.” Most of the time, people don’t understand what we’re dealing with. Feel free to share this with them. Then, just tell them when you’re low on spoons, or out of them. It doesn’t solve the problem, but this may help them understand. Then, come up with things you can do together when you’re low on spoons. And never, ever be afraid to accept, or even ask, for help.
I have a friend, she’s more like a little sister, who is good and understanding. She will come over and sit in front of a tv show with me, or a movie, and bring snacks and drinks. She knows that I will likely fall asleep (fatigue is an issue when you’re not sleeping well, as I’m sure you all know) and that’s ok.
Sometimes it’s about developing new strategies, and sometimes it’s about understanding that not everyone will understand, or has the ability to be “that friend” and that’s ok too. You’ll lose friends over this. It sucks, but that doesn’t make them bad people, just not the right people for you at this time.
We understand each other a little better because we can sympathize. Finding people who can empathize is tougher. And sometimes we have to train our loved ones. For example, with my husband it was about communicating with him that it’s tough for me when he says I’m doing too much, and five minutes later that I didn’t do enough. He didn’t even know he was doing it. Now he is better about letting me know early if there’s something he’d like me to do first. When I have the energy, I try to do that thing first.
And to those people who say, “You don’t LOOK sick” you can always tell them one of two things:
Glad it helped you! It was shared with me years ago and I love it. Another friend of mine uses the idea of spell slots, from D&D/Table top gaming. (You only get so many spell slots per day and have to decide how to use them when you wake up and either study a book for mages, or pray for them in the case of priests.) If you know gamers, spells slots is an instant “Oooh! I get it!” moment. Just say, “I’m out of spell slots” and they will understand.
I just saw this and I totally agree with the way that problem. affects us. The fatique is not the only thing that I am fighting, there is the pain that goes with it. I have had to change my friends many times because I not only have CIDP, I have other diseases that increase my inability to do as they did and they did not have the ability to overlook my shortcomings. It is mind bogoling to live this life but for some reason I have lasted over 12 years with it and will continue. I have found ways to do the things that were necessary and also kept myself busy without help except from few others that recognized my problems. I have been isolated many times also because I have become deaf. I recently found a treatment for that (the cochlear implant) and am now making another new life for myself. So no matter what the problems are. there are methods tor my "madness " when I do the things that I have been told that I could not do. The same is true for all of you out there that have these problems. When your brain says you can and your body says you can’t , Listen to your brain and go ahead and do it. You will stop when the body refuses to move. You will rest and then start again later. You will accomplish something that you want.
Ethel
@pdic I admire the strength that you have found to persevere through hard times. Our body and mind often can disagree and it takes a lot of willpower to choose to listen to your brain when our body is saying we cannot fight on. The “spoon theory” really puts into perspective all of the things others may take for granted. Even with limits on how many spoons you have, we can choose to continue to fight on and live life to the fullest.
