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There are people on the net that have nothing better to do with their time
then be nasty to other people online. They post rude comments, spend hours
a day talking about sites they hate so much, that they well, spend hours a
day talking about them. (lame) They mock the owners and posters for their
opinions and their right to free speech. They expect everyone to fit into
their narrow-minded little world view or else they throw a temper tantrum.
To these people I say grow up.
Here's a bit of info people...the web is
a HUGE place. If you don't like what I say here, or who I am, or what I
do, or talk about, or what I look like, or the color of my hair, or
whatever asinine thing you dwell on, go somewhere else. It's
really, really easy. Honest. You just click the little "x" in
the corner of your browser and *poof* the offending, big, mean and nasty
site has disappeared.
I pay for this site. It's mine. That
means I can use it for whatever the hell I want to. Don't like it if I'm
bitching about something in my life? Oh fucking well. Go somewhere else.
Think I'm stupid for expressing my thoughts? Too fucking bad, don't read
them. Somewhere along the line, someone forgot this simple fact: Live
and let live Don't like me, cool, fine, whatever, I don't care.
This journal is NOT for you. It's for me. I'm not in it for popularity or
fame or anything stupid like that. I write it because I need to write and
express myself and get things out of my head sometimes. So read or don't,
it doesn't matter, but don't waste my time (or yours) bitching about it.
*gets off soapbox*
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Wednesday, July 05, 2006
When It's A Bad Day (A Look at the Daily Challenges of Chronic Illness)
I deal with chronic health concerns. Meaning, there are variations in the intensity, pain, fatigue and ability of what I can accomplish each day. This prevents me from holding down a "normal" job and it also means I never know what any one day will bring. Some days are good, some days are not. Some days are agony. Because I am unable to work, I don't have insurance. I haven't been to a doctor in probably five years or so (exluding two trips to get antibiotics that were a formality before I could get the prescription.) The state of Florida doesn't offer anything in the way of health care excluding woman's annual unless it's for a child. If you happen to be a woman without kids, you're out of luck. From everything I've researched, were I able to see a doctor and afford testing and research, it'd most likely be given a stamp of Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia. Both of these are legitimate, physical conditions. They're not "in your head" and they're not psychological in origin. The underlying causes of each are not entirely understood and there's no simple test to confirm a diagnosis. I deal with varrying levels of fatigue on a daily basis. A good day, I can run errands, and get stuff done. I may feel a little weak or need to sit while I'm out, but it's manageable. A bad day is hard to put into words. I ache. My entire body hurts. My joints are sore. My muscles tremble. I'm shaky. I feel faint, dizzy and/or disoriented. I feel short of breath. Many times I can't keep focus on anything or I feel "fuzzy" in my thinking. Often times, I have a hard time getting out sentences. It becomes difficult for me to hold a conversation because there's lag and delay in processing what was said and how to reply back properly. Some bad days come with digestive issues and stomach pain, though those happen frequently without the fatigue. (Irritable Bowel Syndrome {IBS}) Some bad days come with a migraine though again, I also get migraines on their own. A bad day sees me struggling to hold my eyes open; fighting to stay awake no matter how much sleep I got the night before. Sometimes I doze off without meaning to or realizing, only knowing I did when I wake up and see the time that's past. Sometimes I have to give in and lay down for a nap because it's so bad I can't function. My normal day starts with me waking up, turning on my computer and slowly easing into my day. I need this time to get myself going. It's impossible for me to jump right into getting ready in the morning. I can't wake up suddenly or too quickly, else I'll get nauseous, ill and badly dizzy. If it's a bad day, I can tell pretty quickly. My arm, wrist and fingers hurt and I can't get comfortable at my keyboard no matter how I sit or how I prop my arm. I already use very ergonomic input devices out of neccessity, but somedays, that's not enough. Right now, both my elbows are burning and my fingers feel extremely stiff and sore. My neck has been especially bad the last week or so, causing radiating pain in my shoulder, back and arm. (My neck is a side issue, a result from damage done to me at birth, causing my neck to form improperly which went unnoticed until I was around 13.) I fidgit, I tilt my neck side-to-side, I stretch and I open and close my hands to try to work through the stiff, achy pain. On bad days, it hurts to move and it exhausts me, but if I don't move at least a little, I feel like I seize up. Which hurts more. Bad days feel like two weeks into the worst flu of your life. When everything is just hard. It's all so much of a struggle. You ache. You're bone-weary with fatigue. Your body is against you and everything is off with the world and your place within it. Today I woke up and realized it wasn't going to be a good day. I struggled to shower and get ready because I needed to borrow my friend's car so that I can drive 45 minutes down to Love's work and get him this afternoon. He had borrowed a company car when ours was down and now he needs a ride home since he had to turn the car in. Bad days make me want to cry with frustration. Because when you're in the shower and you're so tired you're in pain, knowing you HAVE to function on a timeframe and you HAVE to get a certain number of things done, it's agony. You physically (and therefore emotionally) can't do it but you don't have a choice. I know I look fine. I know I look normal. I know it's hard to understand being 29 and having such problems. I understand that it's not something which makes sense; that it can seem minor or ordinary, or worse, perhaps just melodramatic and exaggeratory. But it's a sad fact of life for millions of people in the world. I don't even have the worst of it, either. I know people who are worse. (My mother for example, with her RA and Lupus. She struggles far more then I do. Which is heartbreaking, since I know how hard it is for me - I can't imagine how hard it must be for her.) And though there aren't words exactly to express what it's like, perhaps this will help someone understand just a little bit more. When I'm slow to respond to something; when it takes me awhile to get something done; when I don't jump to fix a problem or intervene in an issue - this is why. There's only so much I can do, only so much I have to give and I never know what day I can force myself to do it and what day I can't. Today is a bad day. But I wanted to get it out anyway in the hopes of helping someone understand. I'm going to lay down for awhile now before I have to leave to pick up Love. As always, the thought scares me. I don't know how I'm going to do it. I don't have it in me, but I don't have a choice. So, I'll hope a combination of luck and fate will get me there like it normally does. Sometimes it's all you can do.
~ from the beach near
:: miss m ::
at 7/05/2006 02:17:00 PM ~
~
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