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buckingl 
12:42am, November 2, 2009
Well...................I have not updated this in a few days. My focus has been to get through the work week as it felt like an almost impossible task. I am having to lie down in my lunch hours as I am experiencing EXTREME fatigue and it is pissing me off. My day off yesterday and all I was able to do was sleep......I had so much plans but could barely walk to the toilet. My rash is burning hot and pain full on. I am practsing radical acceptance which is to accept this no matter what. I hope for a good day to come my way soon. My partner has been very supportive and even my teen is trying to think beyond herself. I have not seen much of her on the weekends since her ever expanding group of friends invite her out all the time!!! Its valentines today so I recieved a succession of flowers!!!! Still some romance even after 14 years. I have not been able to exercise and my wish to reconnect with some friends has not happended due to my health............I am trying every natural supplement in the books it is so expensive.I do not know where we would be if I had to give up work!!! On the up side it was cold and raining this morning and last night thank god. A break from the heat!!!!!!!!!!! I have had 3 good sleeps now in a row which helps heaps. My aprents are coming next weekend and I am not looking forward to that it is such a drain on my energy and I like my space. My dad gets grumpy easily and expects to be served meals.......and I have a big birthday party for my daughter who turns 13 on the 20th.................not a good combination. I wish I could just say NO..............well better sign off and help with the housework..........my man BLAIR has ordered me to stay on the couch so I am ok for tonight but no amount of resting ever releives this incapactating fatigue as u all know!! Over and out! Lee
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What to say..mmm.......well back at work. Busy day running groups and seeing cleints. Energy intially ok but then rash arrived this arvo along with the heat and the pain both the rash and general body aches. Have spent most of the evening watching telly.teenage daughter grumpy so avoided going there....some escapism into the tv...............while trying all night to get on top of this pain.........pain is something that wears you down......it just always there in varying degrees.I forgotten what it is like to have a normal body........and I had to listen to a collegue rave on about how tired and sore he is and he is completely healthy......................my tolerance was not too high for this today............I am tired and really hoping for a better sleep tonight so I better sign off and head to the bed.........and hope now the rain has arrived that the night will be cooler..................fingers crossed!
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I sure hope the pain has left you during the night! It is no fun. I get this way too where everything hurts and is bothersome. I am just plain uncomfortable. Sometimes it lasts for just a day and then sometimes for awhile. We never know do we? I hope it cools down for ya too. Do you have anything for the rashes? I get them often and have a cortisone cream on hand always. It's a prescription called Topicort. It works in two days to clear any rash that comes. Just a suggestion. :) Cheryl
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Thanks Cheryl! My rashes do not seem to respond to steroid cream. They are so hot and bright red and move around to different parts of my body....cold flannels hellp. I put the cream on the bottom of my feet though which does help when I am trying to sleep. The pain is better.more manageable. Some times I am completely pain free..............and the I have ongoing non stop pain. I worry about the meds I take to treat this as the are addicitve.but I cannot live and be useful if I am in a lot of pain sooooooooooooooo I do what I have to do. How r u going..............???? Love Lx
cant sleep.so hot here. Feet are bright red and burning. I am wide awke having run out of my amitryptilline!!!!! Cant seem to settle and my feet are so sore. I ahve this awfully strange rash that makes its way down my body throughout the day. It ends the day on the soles of my feet!!! How bizzarre. Cream does not work. Ice and cold flannels seem to take away the heat. I wish I was tired.I have to get up again in 5 hours!!!!!!!!!!!!!!!!!! But NZ is in a heatwave and it has never been hotter. I wish I had aircon!!!!!! My daughter draped her self in cold flannels to cool herself down so she could sleep. I have a noisy fan that isnt much chop!!!!!!!
I wonder sometimes why I ended up with lupus. I have always struggled with some degree of self hate and when my body srated attacking itself it made since to think the psychological manifested itself physically. I have PTSD from childhood but have dealth with that thru therapy. I guess my body decided enough was enough and that I needed a wakeup call!!!!!!!! I have to learn to love my lupus....hating it does not help me maintain my wellness. Fighting it only makes it get stronger!!! I pray for my lupus flare to die down and I pray everyday for a remission. Apparently we attract positive or negative things in our lives and I have always been a bit of a pessimisst so I try to be like the people on this site that I admire.the ones who are living life to the fullest. I want to manifest kindness and compassion towards myself and my body. I need to let go of trying to control things that are not in my control.............all this takes time............Well need to try and get some zzzzzzzzzzzzz so signing off for now. Lx
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U have no air...oh my gosh...i do love the heat but when its that hot i need some ac... Thanks for commenting on my daughter's picture i am super proud of her :) :) Try to take care today and stay strong xoxo Dyan
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Oh I do know the fatigue so well. I wish I could say I had the answer but I can't. Just rest when you can, try not to take on more than you have to. If you have been ordered to the couch -do it! LOL Be careful of what supplements you are taking-some may not be good for Lupus. Especially the immune system boosters. B vitamins help some with energy. Once I was on high-dose DHEA, but it is not for long term. Have you had your iron levels checked for anemia? Sometimes that adds to the fatigue. Eat leafy green veggies and fortified cereals for extra iron. Liver is good too if you can stand it. LOL Accepting the disease and not stressing about helps too. As you probably know, the stress from fighting it isn't good either. I think it's great that you can still work, as hard as it is, but you will have to give up other tiring activities to compensate for all you give of yourself by working. Accept any and all help that is offered! Like I said, if your partner is willing to clean for you-LET HIM! LOL Well, I guess that's my two cents for today. Hope it helps! :) Cheryl
BeautifulDreamer
Thanku sooo much for this awesome advice!!!!!!!!!!!!!!!!!!!!!!!!!
buckingl