Thursday, 25 October 2007

mind boggling

How on earth do some people get it together to write more than one blog post per day? Yes I have been known to very occasionally write two on one day. But I certainly don't post every day. It might be different if I had an internet connection at home though. And all these people who write about actual issues. How do they find the energy? This thing you're reading now is essentially a glorified diary, though without all that personal stuff. So, really, my blog is essentially a laundry list of what I have and haven't done. Speaking of which, did I mention Tuesday night's sushi? Unagi for meeeeeee! Anyway, if you want to see a glorified diary, go read my sister's blog.

And since I'm all up-in-arms about my lack of issue-dealing-withness, let's have a look at the Arthritis Foundation. Hmm? Why, no, I hadn't heard of the arthritis foundation until today either. You'd think it would be the kind of information that doctor-types would give to patients diagnosed with arthritis. Anyway, the occupational therapist mentioned it in an offhand, I-presume-you-already-know-about-this kind of way. So we got the pamphlets from the rheumatologist next door and I went to their webpage 'cause she mentioned that they have support groups and even the one pamphlet said something about it. And yes, the webpage mentions them too. And yes, I grant you that the webpage claims to be in the process of updating itself and generally making itself better, but is it really that hard to have contact details for support groups? Especially when you've got a whole long thing written out about all the different kinds of support groups that are out there? Well, that's very nice, I'm glad to see that there are generalised support groups and specific support groups and all of that - but what's the use if I can't find any of them?

Now that that's out of the way, we can go into my other disease-related rant. People who want to 'help'. I am young [and look younger], I am small and apparently that makes people feel the need to protect me. I'm also female and blonde, which shouldn't be relevant, but probably are. Maybe it's time I dyed my hair again... I happen to have been diagnosed with a chronic illness. Here's a nice little piece of information for you - I don't remember what it's like to be pain-free. Button and I believe we've pinpointed the beginning of my problems. My mother reports a rather drastic personality change when I was 8 or 9. Instead of the cantankerous, quiet young lady you see before you today, you could have had someone more brash and outgoing. Or something. And that's one of the indicators for Juvenile Idiopathic Arthritis. Especially since I was complaining of pain - put down to 'growing pains'. A common reaction, but according to the arthritis foundation, growing pains peak at ages 4-5 and only occur at night! And, of course, children eventually stop complaining about it because (a) it doesn't get them anywhere and (b) they begin to get used to it and believe that it's 'meant' to be that way.

Ahem. Anyway, so I've been diagnosed with a chronic disease and have a body-type that seems to scream 'help me, I am useless'. And everyone knows someone who had arthritis. And they were in a wheelchair, couldn't walk, couldn't do this, couldn't do that... whatever. And they magically cured this incurable disease through a strict fruit-and-vegetable diet. Or only eating pulses. Or walking ten miles on the beach every morning. Yes. Well. That's very nice for them, isn't it. Here's the thing: I don't want to hear about it. Arthritis is an individual disease - no two cases are the same. They're kind of like snowflakes or fingerprints that way ... or people, for example. No two people react in exactly the same way to the same thing. And I don't want your advice about what I should and shouldn't be doing. I don't want to hear about the people I should and shouldn't see. Take your unwelcome interference and offload it on someone else. I understand that people care and want to help. I also understand that many people feel helpless in the face of something like this. I am not one of them. You might be. Don't make that my problem. Don't push your opinions and advice onto me because it makes you feel better - it just makes me cranky, pisses me off and brings me oh so very close to biting your head off ... and even worse, it makes me feel guilty because if I say one goddamned thing about how angry and annoyed it makes me, you're going to put on your injured face and make me feel guilty about my feelings because you're only doing it because you care. Are the above sentiments ones created by people who really care? Why no, I don't believe they are.

By all means, ask me how I am. If you're my mother, go ahead and make suggestions [just not 5 million appointments all at once, please! And, no, dad, those sorts of books are not nice birthday presents, but I do appreciate them on other days]. If you're some arbitrary person who is not related to me or a very good friend take your opinions and your stories somewhere else. If you really care, if you really want to help me, then by all means help me. Give me your arm when we go up stairs, they're difficult for me. By all means offer heaters and blankets etc. for the ever-so discrete 'health reasons' because I do feel the cold and it does make me worse. Offer me your sympathy, if you're feeling particularly expressive - hell, go ahead and ask if there's anything you can do. Just don't tell me that I simply must try this wonderful diet that cured your auntie Martha. I am not your auntie Martha and I don't care about her.

And now I actually feel slightly better.

On to the laundry list! Today [as you may have noticed] was the occupational therapist. It was a bit of a waste of time as she didn't actually do anything, but I guess you can't really have the 'doing something' appointment until you've had the 'finding out' appointment. Yesterday was supper at Quay 4 with mom and dad, after yoga. It was fun and the food was nice. And I even ate all my food, barring the mini-corn thing [which I despise] and a couple of chips. Like I said, Tuesday saw unagi for me. Unagi is my favouritest sushi of them all - yay for dragon rolls! That happened because Button thought there was no food in the house [he was wrong] and we needed to celebrate anyway. Button-bursary stuff was happening and celebrations were required. Sadly there's no definite funding yet, but things are closer to being there. Hmm... I wonder if we should 'celebrate' my OT visit with some more unagi?


H* said...

Unagi! Which reminds me -- we should do sushi some time.

akika said...

unagi for meeeeeeeeee! Strangely enough, I always feel a bit like Gollum when I say that... And yes, we should! Preferably somewhere that has nice unagi. Although, I did end up with unagi last night. Button and I went to the sushi place around the corner. The sushi wasn't quite as nice as Willoughby's or the Sake House, but I may have been biased 'cause they didn't have the kind of unagi I like.
But, really, oily fish three to four times a week is very good for me, and there's no reason why that shouldn't include unagi.