About a year ago I saw a short video of a fellow with CML, and he was talking about cancer related fatigue and how his life has changed since he was diagnosed. I cannot find it anywhere, and I would love to see it again. I believe he lives in Florida. Anyone out there know what I am talking about? The reason I want to see it is to remind myself that the cancer I have is real and that I am not just a lazy person. I keep beating myself up about how I should be able to do everything I always did with the same energy and intensity. I mean, I don't look like I have cancer, right? I sure would appreciate your help with this if possible. Thanks! BTW, I am beginning my eighth year on Gleevec.
help wanted in re: crf
Posted 13 March 2012 - 06:25 PM
I am not sure of the video but I would enjoy the view. I know what you mean about the fatigue, I get so disgusted with myself, I have great intentions but then I sit on the couch most of the day. I force myself to do something, then again I end up on the couch. I used to be a person who would run circles around everyone else and I slept little to go all day. Now I sit more than I go and the frustration becomes a verbal self-abuse because I can't seem to make myself move. It would be great to say I am just lazy and work my way up to moving again, but if i try to do more and force myself, the next day or so I pay for it by being a zombie in the making. I used to think it would go away, or at least become easier, but I have read too many accounts of this not happening. To the ones that have resumed busy lives and even added activities to his/her daily life, I am not only envious of the fact, I am disappointed I cannot seem to get to that point. I sincerely, hope someone posts the link to this video, would be great to see. Thanks!
Posted 13 March 2012 - 07:56 PM
Ditto,I feel the same way. I start everyday with good intentions, and I tell myself I'm going to do 1 positive thing every day. Yeah Right! All I did today was wipe the dust off my dress shoes today because I had to go to court. I wish I could have 1 week full of energy and clean my whole house, then that would give me the incentive to keep going like I used to. We need magic energy potion. sincerely Billie
Posted 13 March 2012 - 10:11 PM
OMG! You are my hero, Billie! You had enough energy to wipe your shoes <g> and go to court. Going to court would make anyone tired. I couldn't figure out how to reply publicly until now, but I shared with Pammartin earlier that I sometimes use 5-hour energy shots to get some pep without a buzz. They are cheapest at Sam's Club, and I don't think they hurt anything. Nothing is the way it used to be, darn it! I haven't cleaned my 2" blinds (in every room of my house) in eight years, and there is nothing I want to do about it. Just live with the dust. I realize that until I get sick and tired of being sick and tired, I won't drink three shots and power through the dusting. Just kidding! Thank goodness my husband isn't a clean freak. I have learned that I just have to let some things go. Now, if I could just cut myself a break about not doing anything..... Keep on keepin' on......
Posted 14 March 2012 - 12:02 AM
Thank you for commending me on dusting off my court shoes. The hardest part was digging through my shoes in the closet to find them. I don't think I've worn them since the last time I had to go to court 2 years ago. My son was in a car accident in 1998,and suffered a severe brain injury. I have him in a wonderful brain injury facility, but every now and then something comes up and I have to go to court to make sure my son is completely protected. Living with cml, I have to stay ahead of the game to make sure he's protected in case I fall in front of a bus. I swear I've been to court more times than O.J..
We have a wood burning fireplace,and it heats the whole house, but oh the dust and soot. But it won't be long before we shut the fireplace down and I have to clean,and clean,and clean! I just can't do it anymore. Ron helps me a lot, but oh hell I'll just say it! He doesn't do it the way I would and I just can't do it anymore.
Enough complaining, I'm sure we're all in the same boat. Who ever came up with this spring cleaning sh** anyway?
It's another I can't sleep night, so I'll try again. Thanks for letting me vent. Billie
Posted 14 March 2012 - 06:18 AM
You know, as always we are our own worst enemies. I can't cut myself a break, my guys don't care if things are perfect, they usually have clean underwear, they almost always have dinner, and they can live in their own filth, they do not care. It is I who drive myself crazy. I am like Billie, I go to bed thinking I am going to get up and get moving. Then I wake up stumble through getting Nick out the door and then I can't seem to move. One interesting thing I have found, mornings are not the greatest, but I take the Sprycel around 5 in the evening. Then around 11 a.m. or so I begin to have some energy, I feel great till about midnight, it is hard to go to bed because I am feeling good, then overnight it begins again. I think it is the Sprycel, but the times are off. I have read several credible posts about Sprycel going in the system and then it's effects are gone within about 5 hours. My only thought on that is, the side effect I notice the most is that hot patch either on the left side of my head or on my cheeks does not happen until the next day. It begins early morn. It is not the menopause hot flash, it is a burning and the red patches become bumpy and tender to touch. It is odd, so many factors and nothing really to pinpoint. Our life with CML I guess is the common factor.
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