| Lou1418 |
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| From: Lou1418 (Original Message) Sent: 5/5/2002 10:26 PM OK. Big announcement. I am going to go out on the town this weekend for my friends 21st. Not sure it is such a good idea. but i have managed to miss most of my friends 21st's, and i really dont want to miss this one as well. I'm planning to only go for an hour or so, but it will be nice to get myself all dressed up, I havent done that for a while. I promise I will post Piccies Lou |
| On July 5, we received a note from a friend of Lou's that she had taken her own life the day before. She was 20 years old. |
| From: Lou1418 Date: Sun Dec 9, 2001 3:11 pm Subject: Another one bites the dust Hi everyone, My name's Louise, I have been suffering from CFS for over 3 years now, I have been trying to hold down a stable job, but I just cant bring myself to get out of bed most mornings, I have non-stop nausea, cluster migraines, and to top it all off I have done irrepairable damage to my ANS, which means that now I cant even control my heart beat, or blood pressure, so I keep getting rushed to ED everytime I go out, because I collapse on the ground in public. Most of the time I dont feel like living, my life is based solely on my illness, I cant see any other way to live it. Someone please tell me that there is light at the end of the tunnel, every time I go to the doctor I have developed a new illness, which cant be cured. I just hope someone understands this, because my family and friends dont seem to understand. They think it is laziness that I dont go to work, because they cant comprehend a fatigue so great that I physically can not get out of bed some mornings........ |
| Lou was from Auckland, New Zealand. ED is probably Emergency Department. After her death, I searched around the net and believe her last name was Armstrong. |
| The last post we received from her. |
| From: Lou1418 (Original Message Sent: 6/30/2002 12:18 AM Well, I know i havent posted for a while........ I'm having a bit of a rough time...... Results still not back from biopsy (cf. post about quality of public health system). I feel like I'm dying every day........ I know that sounds melodramatic......... But I am basing this on the fact that i sat with my grandmother every day while she was in the hospice dying of cancer, and she was capable of a lot more than me. She felt better (this is based only on what she told me of course) than i feel, she looked better than i do, and her energy levels were higher........ I can't even potter around my garden at the moment with out collapsing............. I cant have visitors. I just fall asleep, or if i force myself to stay awake I get grumpy, and annoy them. I definately cant go out.......... I can however type....... sometimes, as long as I dont have to do it for more than about 30minutes.......... i feel isolated. I am sleeping about 20 hours a day I cant will myself out of bed for longer than about an hour at a time. If i try to stay awake for too long, I collapse, and dont wake up for several days........ I have lost all sense of time. If i didnt have a clock, and a running date on my computer, I would have no idea what was going on. One good thing. The fog is getting better. The time that i am awake, i can actually concentrate. I dont feel human, but i can atleast focus........... I'm sorry to offload this on to you all......... I know that it probably wont help much. And it doesnt really make for interesting reading. But I am feeling a little better to actually get down in words how i am feeling. It is hard to have it bottled up inside. I have already broken down in tears 5 times today... (which is strange seeing as i have nly been awake for 3 hours) admittedly 3 times were from pain, and only 2 from frustration/angst/desperation. I bought Playstation2. I thought that would be something requiring very little energy about that i could do. Dont bother. Although it is mildly interesting, the games are not any more fun than PS1, but the console is $NZ 400 more expensive and the games are twice as much. Oh well, i can watch DVD's now. that is cool. Another cool thing is that I got my nipple pierced the day after my biopsy. It looks really good, not that many people will get to see it, but i know it is there. Trying to list good things is hard.......... Another good thing is that my puppy has adopted my sleep patterns..... he is sooooo cute. He gives me hugs all day. Oh well I feel a little better................. thanks for listening Lou |
| The biopsy that Lou refers to in her post was part of a Hemochromatosis diagnosis. HH is a genetic blood disorder, sometimes called Iron Overload. A common treatment for HH is bloodletting. Removing the blood reduces the amount of iron. Unfortunately, many people with CFS have low blood volumes. Lou never did tell us the results of her biopsy. She did join one online support group for Hemochromatosis and started another one. |
| "Stuck in a world of eternal sleep, yet dreams just a memory long forgotten. Wake up world and see us! We are here! It's not in my head. I'm not even in my head most times. Forgotten children in the rain Please let the sun come out."o Lou, May 5 |
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