home again home again

My mother, at the tender age of 65, has discovered the blogosphere. The woman couldn't tell you what a USB cable is to save her life, but she can tell you the names of all the influential political blogs out there. She still double-clicks everything, doesn't know what an online "link" is, how to change any preferences... and so on, but she seems to be able to navigate the blogosphere quite well, thankyouverymuch.

She reminds me a little of myself when I was in elementary school. I would learn something new and talk about it incessantly because I was excited to have learned it and wanted to show off. Yes, I was/am a nerd. And my mother's behavior of late would indicate that it might be hereditary. I should start clocking her, seeing how many times she says blog* words in a day. *shakes head* Too funny sometimes.

Much as I love both my parents (they really are awesome people), being at home is kind of difficult. I don't really think of this as "home" anymore. My older sister is trying to convince me to stay here and go to school in-state, but a) I like the east coast, b) I couldn't survive that long back at home, and

c) (which is the most important one), I feel like a total failure for being back at home at all. I mean, yes I did have surgery in the middle of last semester. Then brain surgery over the winter break... But goddammit I know other people do that and still find the stamina to go back to school the next semester!

I have been vomiting every day for over two weeks. I never go anywhere. So I know it's a good thing I'm not a school... But I really, really wish I were.

*whine over for the evening* Sorry to whine, I'm having kind of a bad day and don't have anywhere else to vent.


Blogger Dreaming again said...

Me thinks you're putting to much pressure on yourself!

One of the biggest traps we can fall into in dealing with chronic illness is the misconception of what is 'normal' and what is 'abnormal' and what other people with chronic illnesses can and can't do and we're not measuring up to it. Society, does not help.
Currently, I'm working toward getting a house through Habitat for Humanity. They make NO allowances for disability. None. Zip. Zingo. Zilch.
Their reasoning ... in their words ...
"We had a blind family who did it last year, and they kept up with everybody just fine, if a blind person can do it, anyone can."

Problem ... blindness ... isn't lupus or myasthenia or post polio ... blindness doesn't come with fatigue, or muscle weakness or pain syndromes.

Society dumps all disabilities into the same class, so we tend to and why the heck can't I keep up with my friend who has MS?????

Well, she has relapsing/remitting MS and she's only had it for 4 years, I've had MG/lupus for 15 ... we're not on the same playing field. Comparing, only discourages.

We have to find a way to live in OUR version of normalacy.
It's MY version of normal.
It's MY version of typical.
IT's not typical.
I am, in my sons words ... Normal in my abnormalities!


11:49 PM  
Blogger bronwyn said...

Thanks much for the comment... I'm sure you are right!
I just get so frustrated, like a caged animal. And of course there is a lot of pressure from other people who are saying, "Well you LOOK fine!" as though looking fine somehow proves that I am in prime health.

That's awful that the people from Habitat for Humanity couldn't reach out a little more and try to give you some understanding, if nothing else. I'm really sorry to hear that.

I keep telling myself I should be doing more, trying harder. But I am sooo tired that some days even brushing my teeth seems hard.

My greatest fear is that I will always be this tired, and never learn to somehow compensate for these consuming symptoms.

Sorry to vent further.. I really appreciate your thoughts, though, and thanks for leaving the URL. I'll have to go back and read some of your other recent entries.

2:14 AM  
Anonymous Anonymous said...

i agree with the first commenter. also - very sweet about your mom. i think blogs can be a wonderful outlet and source of "community".

2:37 PM  
Blogger Dreaming again said...

It is frustrating that Habitat doesn't make allowances, but ... I knew that going in. Should they, yes, they should, they make allowances, exceptions for mental illnesses..but not physical ...go figure. Oh well ...eventually, I will have a brand new house, and I will know that I have worked my buns off for it, more than most could even begin to understand, it will be quite the accomplishment.

The fear that it won't go away is probably the hardest thing I've had to live with. I have no answer for you ... just remember, things do change. Medications change, times change, medical science changes.

Rest when you can, when you have a good day, revel in it. Fully enjoy it. When you're having a physically bad day, try to find a way to make it a mental introspection day, a mentally productive day. Bogging about it, teaches others what you're going through, you'd be surprised how much of purpose that can give you.

Remember venting is good for you, keeping it in is hard on your body,blog about it, email about it ... rant about rave about it... let it out. Don't let the resentment of having your body betray you eat away at your soul, then your soul can thrive inspite of your body.

Feel free to come vent at my blog, or email me at peggikayeE@Aol.com and vent in an email ... I've been there done that ... heck, I own the tshirt factory!!

I can remember trying to brush my teeth and dropping the toothbrush and just crying because how can you be so tired you can't even hold up a toothbrush ...but, when your body betrays you ... you can.

We need to look for the positive, but not by ignoring the negative. It's not in replace of, it's inspite of ...

You can survive this, not fun, not pleasant, but it is doable!

I'll be cheering you on!

10:48 PM  
Blogger Internal Medicine Doctor said...

well, another great post. you're a real warrior. your greatest battle, if your parents resemble mine, is putting up with them.

oh god, i'm about to have a baby. someone will soon be saying this about me, oh god.

11:54 PM  
Blogger bronwyn said...

LOL, truly, Madman, your note made my day. Try not to worry too much-- Future Intern is going to spend these first few years adoring you.

2:14 AM  

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