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.

Sunday, January 17, 2010

A beautiful day

I did a load of laundry today! All the way from putting the clothes in the washing machine to folding them neatly after they were dry.

It's ridiculous how much joy it gives me to be able to say this.

The past few months have been a haze of fatigue and pain. I have been doing things - my parents have com to visit, I took a trip to Florida - but there was always the constant underlying pain and discomfort, just beneath the surface, just beyond my reach. I haven't driven a car for over 6 months or been able to do groceries for something like a year.

But today, my mind is clear and body is (almost) pain-free. I feel like a captive animal that has been released back into the forests.

And I'm going to celebrate!

I can't believe how many things there are that I can do. I can go to the mall, I can go buy food for Lola, I can see a movie without getting exhausted, I can visit a friend, go for a walk....I can't choose!

But I think the thing that gives me most joy is that I can be self reliant. If I'm thirsty, I can go to the kitchen myself to get a glass of water. If I'm cold I can get myself a blanket. For the past few months, my husband has been giving me breakfast in bed. After that he makes my lunch and keeps it in the microwave, walks & feeds Lola, and then goes to work. If I am able to stand up by afternoon, I heat my lunch, eat and go back to sleep. If I can't, my husband comes home from work to feed me and take Lola out. He then goes back to work. In the evening I usually wake up just before he comes home. He fixes me a snack, feeds Lola takes her for a walk, makes dinner, finishes office work and finally collapses a night.

I know that all this is not my fault, but I still feel terrible. Just the fact that I was able to take on a bit of the load by doing the laundry gave me an incredible amount of happiness.

I'm off now to make myself a cup of coffee, and after that...I'm going to live life.