Hi Sands, I can only speak for myself but to tell ya the truth it's my own fault when they don't get it. I never wanted to disappoint anyone so if they bugged me a little or guilted me I would drag myself off to do what they wanted. In my defense I also wanted to beleive that I could still do certain things.
I've recently realized that I have to know what my body is sayig. yes means yes and no means no. My friends and family have seen me struggle to do something just to have to turn around and come back home. If they truly are people who care about me they don't want to put me through that again.
They have begin to change their speech when they ask me somthing. It's now becoming would you like to go if you are up to it? or if you get tired I'll run you home. My brother actually took me home in the middle of church service one day. I couldn't stay I was miserable. I walked out side for some air and he came out and said come on hun I'll take you home. You have to set the ground rules. it's hard somtimes because we think they should be able to understand without us coming out and telling them. sort of like "well if you don't know I'm certainly not gonna tell ya!" LOL. Consistant ,consistant consistant, I think is the key. at least for me it is.
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I still have no diagnosis but I am just tired and achey all the time. It seems as if whatever I have it is a disease of convenience. When it is convenient for other people to deal with it that is. My husband is supportive until my fatigue and aches interfere with a clean house or some responsibility I have let go. Then I "just don't care about things enough to get myself going". Oh Blah..........
Talk about inconvenient. Diagnosed or not this whole thing is inconvenient!
I think it's your in-laws who are trying to lay a guilt trip on you... and I say - Don't let them!!!
All I hear in your post about your conversation with them is..."we, we, we" and nothing about you. That's just not right! I'd like to see them spend a day in your shoes!
I feel so tired and useless today Barb - I just got up again and I haven't done a darn thing today or yesterday for that matter...
I'm glad your daughter remembered Mothers Day too...
Actually, my husband was the one to first come up with Lupus. He is the one who printed out the 11 criteria and talked to my doctor. I have some sketchy markers fatigue, aches in my joints, abnormal blood counts, but no pos ana. I don't work during the day but come 3:00 I am on the go with the kids till 8 or 9 with all their activities and schoolwork. I it just hard when you have to pep talk yourself all day to accomplish the smallest of tasks> I'm sure you get it. Anyway I just wanted to make sure i responded and I hope you are feeling better too.
take care ,
I really struggle with this, too. It seems that I've reached the stage where people have stopped asking me to do things. I can't decide if this is a blessing or if it hurts my feelings! So, either my friends and family are trying to be sensitive to my needs, or they've just given up on my ever feeling well enough to fully participate in life...who knows?
I agree with the others about the importance of letting people know your needs. And you just have to shrug it off when they don't understand.
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