Sunday, July 18, 2010

Busy busy busy

Well...relatively busy. For me, anyway! Had dinner with the beau's parents for the first time last night. They don't know about me and my oh-so-specialness, so I had to pretend and be "normal" which never leads to anything good. We parked far and had to walk far (otherwise, I usually just get dropped off while he parks) and then they insisted on walking us back to the car. So I had to walk like a normal person (ie 5 times faster than my normal pace). Oh goodness. It all seems so minor writing it here. But needless to say, between all the walking and the general elevated levels of stress, I'm out for the count today.

I also got semi-lectured by a coworker this week who started prying into my life and condition. I don't like to discuss this with people, but he asked me about my life and if I go out or exercise, etc. I said usually no, to which he replied that if I never go out I'll never feel better. That's lovely. I adore talking to people and having them judge me and basically imply it's my own fault. I know it's just how it is with this condition and it's not a big deal, and I shouldn't let it get to me...but it just gets under my skin every time. But that's life, people will judge everything by their own (usually misguided) preconceptions.

And, I found this "Energy Point Index" for CFS recently. It's kind of helped me gauge where I'm at better, because I'd try to give myself a rating of wellness in the past, but as I would get better I'd realize that the numbers I had been giving myself should have been much lower. This helps standardize it! So, I've decided I'm now at a 4. A nice improvement from 3.5 or so a month ago.

And, and thanks for the comments for my last post. We have the cruise tickets and I'm very much looking forward to going! Now I just have to sit back and wait ever-so-patiently for September 12th, which is much too far away! :)

5 comments:

Lee Lee said...

haha that sounds so funny, pretending to be 'normal' .... I totally get that! I checked out the energy point index and I am a 2 ... but even as a 2 I pretend to be as 'normal' as I can when someone visits. It's kinda dumb in my situation be cause the only visitors I get are Mum and dad and one friend and they all know and understand howthings are ... but I still pretend ... as best I can, it's a weird thing ...
I hopethings go well for you with 'the parents' ... but do try to just be you as much as you can .... I am sure you have plenty to offer regardless of how far you can or cannot walk!

DolceVita said...

Thanks, Lee Lee! Yeah, the "normal" act is a hard habit to break, it's pretty bizarre; for me at least, it's almost instinctive. It's SO exhausting too! I have such a hard time -not- acting friendly, chatty, and lively with people, no matter how bad I feel. I guess it's instinct, or just not wanting to seem unwell to others? Though I've sort of learned to just give into the tiredness now with family and my roommate at least. But I try and avoid seeing other people because it brings the old me out haha. Too tiring to be me too often :)

Jo said...

It is difficult meeting new people and knowing if you say you have CFS/ME there will be the usual discussion - and even, as you found with your coworker, judgement. It's a theme that comes up again and again in people's posts. Remember, you can choose not to explain, or you can offer to send them a link to more info. A couple of times I've got the 'oh i had that and got better by following a special diet'. Pah!

I wonder, though, why it was so important to act normal for the BF's parents? That was a lot to carry and, if the relationship continues, they'll have to know anyway? You can be friendly and lively and the real you - AND have CFS, the two things are not incompatible. Or am I reading this wrong?

I love your blog by the way. The real you shines out in it.

upnorth said...

I just made the mistake of trying to act "normal" so I wouldn't have to deal with comments and judgement. Now I'm paying. It's so hard. I don't know about you, but I don't LOOK sick usually so it's hard for people to remember I am sick. I think over time it does get a bit easier to just say "screw it" and tell people you can't walk or stand or....

I just looked up that scale. Wow, the only complaint is they have you going from only 4-6 hours out of bed to 40 work!!!!

DolceVita said...

Jo - Thanks so much! I enjoy reading your blog as well. It's tricky with the parents because he doesn't want to tell them about my condition until absolutely necessary, which I understand and I'm fine with really. He's worried they'll overreact, worry too much, etc. And re: being friendly and lively, it's much too tiring to be that way (as natural as it feels!) for me right now. So I guess for now it's incompatible.

Upnorth- Yeah, I'm the same way. I don't look sick either! So people forget instantly and expect too much. I guess it's just a matter of learning to set firm boundaries when with others. But, ugh, I hate having to do that. I feel so...lame. Heh. Also, I can sort of see the 40 hrs a week. Going from 4-6 a day to 8 a day (with difficulty). Maybe.