I've been cancelling a lot on my friends lately. And I know that while they try to understand, sometimes it can be difficult.
So here's a list of what friends/family of CFS/FM patients should know:
1. I will cancel. Despite all my best intentions, there will always be times when I will cancel at the last minute. I'm not trying to be inconsiderate, I usually cancel only after I have tried all alternatives like coffee, rest and energy drinks and they haven't helped.
2. I will be late. I usually need to start getting ready at least 4 hrs before I go out. I need to rest after taking a shower, again after combing my hair, putting on make-up, or getting dressed. I hate being late, but it's often impossible for me to correctly gauge how much time / rest I'll need.
3. I will not understand. I get terrible brain fog. Sometimes I just won't understand what you're saying, however simple. I simply have to wait for my brain to clear - I'm not being deliberately obtuse or difficult.
4. I will forget. You may tell me something 5 times and I may still forget that you told me. With the brain fog, it can be very difficult to simply understand what's going on around me, much less remember stuff.
5. I may not be able to help. I love to help my friends in any way I can, but sometimes this is just not possible. Again, not being selfish or thoughtless, just can't do it.
6. You may not hear from me. Sometimes weeks, even months, go by and I don't call/email friends. I do think of you, it's just that talking on the phone or even spending time on the computer can be exhausting. Pls do call / mail me sometimes, even if it feels like you're always taking the initiative. It rly means a lot to me.
7. I appreciate your support. Even simple things like knowing that you will understand if I cancel go a long way in helping me. Sometimes I may need your help, other times just knowing that I have friends who truly care abt me can make me feel better.
I know it's not always easy being my friend, but I truly hope that you will still think it's worth it. I hope this helps you understand me a little bit better.
If there's anything else that CFS/fibro patients or friends / family of patients would like to add, your comments would be welcome.
So here's a list of what friends/family of CFS/FM patients should know:
1. I will cancel. Despite all my best intentions, there will always be times when I will cancel at the last minute. I'm not trying to be inconsiderate, I usually cancel only after I have tried all alternatives like coffee, rest and energy drinks and they haven't helped.
2. I will be late. I usually need to start getting ready at least 4 hrs before I go out. I need to rest after taking a shower, again after combing my hair, putting on make-up, or getting dressed. I hate being late, but it's often impossible for me to correctly gauge how much time / rest I'll need.3. I will not understand. I get terrible brain fog. Sometimes I just won't understand what you're saying, however simple. I simply have to wait for my brain to clear - I'm not being deliberately obtuse or difficult.
4. I will forget. You may tell me something 5 times and I may still forget that you told me. With the brain fog, it can be very difficult to simply understand what's going on around me, much less remember stuff.
5. I may not be able to help. I love to help my friends in any way I can, but sometimes this is just not possible. Again, not being selfish or thoughtless, just can't do it.
6. You may not hear from me. Sometimes weeks, even months, go by and I don't call/email friends. I do think of you, it's just that talking on the phone or even spending time on the computer can be exhausting. Pls do call / mail me sometimes, even if it feels like you're always taking the initiative. It rly means a lot to me.7. I appreciate your support. Even simple things like knowing that you will understand if I cancel go a long way in helping me. Sometimes I may need your help, other times just knowing that I have friends who truly care abt me can make me feel better.
I know it's not always easy being my friend, but I truly hope that you will still think it's worth it. I hope this helps you understand me a little bit better.
If there's anything else that CFS/fibro patients or friends / family of patients would like to add, your comments would be welcome.
