Monday, January 18, 2010

For my friends...

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.

9 comments:

  1. Great post. I am blessed with some wonderful friends who completely understand that any plans with me are tentative. They are thrilled when I can make it and understanding when I can't. The friends who didn't understand didn't last...

    Sue

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  2. This is great. May I put it on my blog?

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  3. Eventually, your true friends will come to understand your reasons for cancelling and/or not staying in touch. At least that is what I have found over the years. As for those who don't, you can do without them. This may sound harsh, but learning how to and to whom to portion out your very limited energy resources is perhaps the most important aspect of this crazy illness. But then, you probably already knew that;)

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  4. Hope you're doing better soon!

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  5. A beautiful post. That about covers it with friends! When I was first diagnosed with CFS, I wrote a note like this to my friends and attached an article by Dorothy Wall on CFS. Sad to say, most of those friends have "gone missing" from my life. But the ones who haven't, they're real treasures!

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  6. That's all so true. I sometimes feel so bad cancelling plans with my friends- but I hope they understand why. I wish they could read that post, but I always feel weird emailing them things about CFS...

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  7. This was an incredible post.

    I almost want to print out copies and hand them to every friendly person I know who wonder why I am constantly housebound.

    It's a hard life, but some of us have to lead it I suppose.

    Love your blog! You should check mine out at a-b-martin.blogspot.com!

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  8. Thank everyone for your good wishes.

    - Hege (& anyone else out there who's interested), I'd love it if you would put it on your blog.

    - Forgetful girl, try your friends, they may be more understanding than you think. I used to hesitate to talk abt my illness, now I simply import my blog to facebook and anyone who's interested can read it. That way I don't feel like I'm bothering my friends.

    A couple of people have also asked if they could send this to their friends...again, feel free.

    Cheers!

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  9. I have just found your blog! This is a great list! We need to help our friends understand don't we? I spent years making excuses and covering up my illness. Not anymore ... That's one of the reasons I have justed started a blog - to try and get CFS out there and understood. Well understood might be pushing it a little ... Feel free to drop in and say hello to me.

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