Wednesday, March 10, 2010

A weird and wonderful day

Today is the strangest day ever!

It's hubby's (K) b'day today.

No, that's not what's patient folks...

Anyway, as I said, it is K's b'day. So, of course, I was planning the usual cake, champagne etc. But yesterday K asked me a strange question. "Do you want to give me a birthday present that would rly mean the most to me?"

Of course, I said.

"Then, just for one day, see yourself with my eyes. Love yourself the way I love you. Treat yourself the way you know I would like you to. If you want to do something, think about whether you're rly doing it for me or for yourself. Pls don't clean the house. Think of how that would drain your energy, so you won't even be able to talk to me in the evening. You don't need to dress up and get tired. I'd rather see you laughing in pajamas. My ideal birthday present would be to see you lively and energetic, even if the house is dirty and there's no cake and you couldn't plan a party.  " (or something like that).

Heavy, eh? Yeah, I mean who would be ok with no cake on their b'day??!!!

Ok srsly, I decided that if that's what he wanted, then that's what he'd get. After all he was the b'day boy (

And today has been the wierdest most wonderful day ever! I feel like I'm on vacation. I want to wash my hair so it looks nice for tonight, but I know it'll tire me. Normally I would have managed to convince myself that washing my hair wasn't optional, it was obligatory. And that somehow, I could summon up enough energy to do it.

But looking at it with K's eyes? Now that was a whole different ball game. He would say - Conserve your energy. Save it for when we're together. I don't care if your hair isn't washed, you're always beautiful to me (ok, so I put in the last part myself, but I know he would have said it!)

And so the decision has been made!

No hair washing today!
(for those of you who are wondering what the big deal abt washing hair, see  photo!)

I used this technique on everything today. And it was fantastic. So I began to wonder why it made the difference it did, and I came up with the following:

1. I usually decide that everyone's wants/desires are the same as mine. I often try to tidy the house before K returns from office. But I realized that I do that because I would like to come back to a clean home. If he had to choose, he would choose an energetic wife over a clean house any day! So I'm rly doing sit for myself - I can't pretend it's for him.

2. I am not realistic about my energy levels. I can easily convince myself that I can do anything with "just a bit more effort", until I reach the point where I'm bedridden. Looking at it through K's eyes, made me think - If he were here would he like me to use my limited energy on this task? And, I realize that it's ok to stop because I'm tired. It's ok to listen to my body.

3. Obviously that demands the question - why can I stop when K thinks I should, but not do it for myself? Guilt. Yup, that's it the culprit - guilt! To myself, I'm 'lazy' if I don't do something that needs to be done. To K, I'm genuinely tired - something that I'm not willing to accept.

It's odd that I've had CFS/fibro for almost 8 years, but I still haven't learned energy management. (Hriday, I know that this is just asking for it, so go ahead...). But better late than never I always say!

Stay tuned for whether I am able to incorporate these changes into my daily habits....

Monday, February 8, 2010

Are you listening God? It's me....

I'm soooooooo happy, I can hardly stop smiling.

I had such a wonderful time today. Didn't do much - just went to a friends place, chatted, played Pictionary. In other words, had a 'normal' evening.

Guess someone up there is reading my blog too :-D

Sunday, February 7, 2010

Breathe again...

Here's a pretty good article by Dr. Bruce Cambell on his life with CFS/fibro...

ME/CFS and Fibromyalgia: Rebuilding Life in the Face of Loss

Saturday, February 6, 2010

Just another day...

The past few months have been exceptionally bad in terms of pain. I recently got off a medicine that was controlling pain pretty well, but had other unwanted effects. Since doing anything - even sitting in the car to go out - exacerbates the pains, I've been forced to become a bit more of a homebody that I would ideally have liked to be.
This morning, as I was playing Scrabble, hubby walked by chatting with a friend on speaker-phone. She was telling him her plans for the day. She had lunch with a friend, after which she'd drop her dog off at our place so he could have a play date with Lola, sit with us for a bit, then go to a comedy club, followed by a bar/pub/club. The next morning she had to be up early for a Superbowl party at her place. She made it sound so easy. So normal. Then I realized - it is normal. For most people.

I'm waiting for the day when it'll be normal for me too.

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.