sooooo tired.
i am having a really hard time getting up. i have stuff that has to get out today and i have just now gotten my coffee and pep pill. i am so tired. my mind has been racing with all of the things i want to make and do, but the body is just not cooperating. it is a funny thing, on lupus group online i notice that people make comments that lupus sucks, or chronic fatigue sucks, or whatever. i consider it to be a part of who i am. it is strange, when i really think about it. i have always felt that way about all of my various maladies, that they just are a part of me, just like the parts that i like. is that a healthy way to think? i dunno. i never think of any of my issues as things that will ever go away. it just is a part of me and i don’t really judge it beyond that. it just is.
regardless, the trip to LA really pooped me out. any trip or event tends to put me in a tailspin. that part of me is frustrating. it keeps me from traveling or participating in things i would like to be a part of. i am always in fear that i will be too sick and have to ditch out, which happens more often than not.
last night i kept waking up with a migraine, and this morning, too, so i guess this is the fallout from last night. i feel scrambled and tired. i figured i would moan about it a bit.
okay, getting up. getting going. wish me luck.
xo
n.
Anonymous said,
October 24, 2007 @ 4:45 pm
I understand you completely! I have been sick since the age of 14! I am tired all the time. Provigil doesn’t always work. That is my pep pill. I drink sometimes 2 cups of coffee! I have my friends “pencil” me into things becuase they know that I have to wait to see if my body will cooperate with my will.
It is a part of my life and has been for some time now as I have said, but I won’t give in to it!
Right now , I’m in pain. Check out my blog at http://www.lovinglupies.blogspot.com. Take care.
Makeba said,
October 27, 2007 @ 1:32 pm
Wow! Where do I start?! I am a mother of a 10 and 12 year old and have been diagnosed with SLE from the age of 17. I am now 32. I am tired all the time but despite my many complications I still make things happen. I need help and have been strong for so long that I don’t think that those around me understand when i say that I can’t. I suffer from scared Lungs,(on oxygen) myosytis, vacsulitis, Raynoids, Scleroderma, RA, Lupus Fog, Anemia, Atrial fibrillation, hyper coagulation. I live alone and everyone has a way for me to fix my problems alone. I am married as of 12/2005 but the army hasn’t seen a need to relocate my husband from Texas to Georgia where I live. He has been away from me since 8/2006. I am a first grade teacher at a public school in Atlanta and want to finish up my Dr. in educational leadership. I fear that wanting to be normal without physical help will kill me early. Right now being a Lupus patient isn’t possible because of my financial situation. I remember all of the things that I used to do and can’t really keep friends because I’m too tired to be social. Any suggestions?
keba
natasha said,
November 1, 2007 @ 11:38 pm
lupies, it is strange, isn’t it? it either is really great and you take it and an hour later your feel like skipping around, although when it wears off, it really sucks, coffee doesn’t do much to me anymore. sigh. it is just nice to know that i am not crazy or just a crybaby, which is how i was made to feel for most of my life. i will pop by your bloogy!
xo
keba, have you checked out the lupus communities online (i am on the livejournal one and there is a site called http://www.butyoudontlooksick.com) where they cover most of your issues. the people are really supportive and kind, and inspirational, like you are…pressing through severe illness (way worse than i am, and i limp along and whine) and working, raising children, getting doctorates…that is amazing! i think that is a good start for you to find people to talk to and relate to. i cannot imagine being away from my husband like that, i am so sorry to hear that.
as for friends, do what you can do. there are local support groups, which might help you to meet people that understand, although i think i have really found some fantastic people through my local stitch n bitch and network of local knitters and fiber people, as well as online…so if you have an interest, that might be a good way (book club, etc) to meet people. i also have had to stop talking to some close friends due to my health, but you can only do what you can do. i am well known for cancelling plans. it sucks.
be well.
warm fuzzies
natasha