I am 7 months into treatment with Gleevec for CML. I am responding well to treatment, but having significant pain, fatigue and nausea. Since this may be my new normal, I'm trying to figure out how best to get the support I would like without feeling as if I am whining. Any suggestions?
How to talk to family about how we feel without whining?
Posted 17 March 2013 - 05:10 PM
Sorry to say that your family is just not going to "get it." They will be supportive in their own way, but eventually they will see that you look the same as you always have, and will assume that you haven't changed. You are going to have to figure out how much you want/need from them and go from there. My advice, for what it's worth, is to just deal with the side effects as best you can, but be honest about how you feel. They don't know what you are going through physically or emotionally. . .unless you let them know. Just don't let them know so often that they get sick of hearing it.
Posted 17 March 2013 - 05:50 PM
You nailed it. They do see that I look the same as always and assume that all is as it has been. So far, my default has been "I'm fine", so I can't fault them for not getting it. I'm looking for the right balance of honesty vs. silence. Thanks again.
Posted 17 March 2013 - 06:33 PM
I will say that I think it does get easier over time. The first year is the hardest. I'm coming up on 4 years now, and I think that mentally, I've learned to accept things and put cml more into the background than I was able to in the earlier years. I'm on Sprycel, and the side effects aren't as obvious and intrusive as they were on Gleevec, though lately different side effects have really kicked in.
I do let my hubby know when the side effects are bad, but in a matter-of-fact way. He has gotten better about acknowledging them. I don't let the rest of my family know because my mom would go on and on about them and it would be the center of the conversation with her coffee group. I don't want that. Our close friends don't know how bad the side effects can be because I listen to others go on and on about ailments and it drives me crazy. I don't want to become the kind of person who talks on and on about ailments making people cringe and roll their eyes.
You will find your balance. It may take awhile.
Posted 17 March 2013 - 08:33 PM
Hi Leesa: I agree with everything Marnie said. Thats why we have this group. Nobody will know how you truly feel, except for those who have CML like you. You can have a very understanding family, but they are not feeling what you are. My husband Gary is great. He sees me get up in the morning where I cannot even open my eyes all the way because I get very bad edema in the eyelids. I have to use icepacks to get the swelling down. I was diagnosed in 1998, but I did not start my Gleevec till 2000. My first treatment wiped me right out where I could not function at all. That my family saw for sure. It does get better with time, and thats great that you look so good. Just try not to complain all the time, but when you do not feel good just say so. I feel that if anyone does not understand, then its their problem.
When you feel fatigued then rest. People will see what is going on without you even saying anything.
I have learned to refuse different events when I do not feel like doing it. I know relatives get annoyed, but it does not bother me anymore. It does take awhile. This is a whole new experience that your body and mind is trying to figure out.
I hope your doing well with the Gleevec and your Blood Counts, and thats the most important thing.
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