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Discussion Starter · #1 ·
Why is that people think we want this thing? You know about my pain and joint problems. Today I have a migraine and am barely functioning. I have take all the meds I can. My son is very health conscious(personal trainer, organic eater). He thinks I can just tell it to go away. I tell him I can't go to the Gym cause of the pain. I could probably eat better. The point is he thinks it is mind over matter.

He says I take to much meds.

So upset:(

Stacy
 

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Pollianna
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Aww bless you. My daughter told me after I managed to walk again and work after 3yrs even tho still terribly ill. "but youre alright now, Mum there's nothing wrong with you" Could have murdered her :eek:

No one knows what we go through :hug:
 

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That is the ignorance of youth, or those that have not been where we have been.. I am glad that they haven't but sometimes would give a lot just to put them there for a week or two:rotfl: XXXXXXXXXXXXXXXX
 

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(((((Stacy)))))

Print out the Spoon Theory and give it to him.....maybe frame it if the mood strikes you.:rolleyes::rolleyes::rolleyes:

Kids are pretty self absorbed, mine is also and they just can't seem to think out side of the box sometimes.

The spoon theory helped my son understand............now I think he gets it.:wink2:
 

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Howdy Stacy,
There are some things that can be understood almost exclusively by those who experience them. Some are good (driving a Lotus Elise or an R-type Bentley, riding a motorcycle, etc) and some are not (autoimmune diseases, anaphylaxis, bankruptcy, eating cauliflower). It can be terribly difficult for people who love us and haven't the foggiest idea what Lupus is about. My older sister is completely baffled by it; and with my allergies almost killed me twice. We just must accept that some people, even our closest, will never understand. In fact it is uncharitable to expect them to understand as we often cannot! Just give thanks for the few who do.
Douglas+
 

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I think it is the way some kids cope with parents with SLE or any other illness. They have that zest of life and don't want to think of their parents as to having health problems.

You know how hard it is for us to accept that our bodies are fighting against us. Having a kid or anybody else for that matter cant not even think or begin to know how much pain that we deal with.

I say go easy on your son, he really means well and loves you.

Love,
Lyn
 

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Dear Stacy-
I am going through the same thing!! I have two grown children. A thirty year old married daughter with five children, and a twenty-three year old divorced son with one child. I used to work five to six twelve hour shifts as a nurse on a weekly basis. I was very active. I have not worked as a nurse since March of 2003. My kids are frustrated because I can't do anything I used to do. They said there was "nothing wrong" with me because it took the doctors so long to find out what was going on. Now they say I am taking too many medicines. They think the methotrexate is the worst thing in the world. I am going to have to do alot of teaching, but I think they still won't get it. I am at the point where I just have to do what is best for me, and not try to please everyone else. I just want you to know that I understand exactly what you are going through.
Rose
 

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Spoon Theory

Dear KarolH-
Could you please tell me where to find the "Spoon Theory" I would really like my daughter to read this. Anything that helps family understand what we are going through I would love to get my hands on.
Rose
 

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Discussion Starter · #10 ·
Thanks guys. It took two days to get over the headache. I started throwing up this morning. Probably a bug. I try and try to get others to understand. It is like beating my head on wall. Now we know where the headaches come from:lol:

Stacy
 

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Hi, I think it is hard for children to understand. They don't want their parents to be ill and they get frustrated and say cruel things. Especially as we don't really look sick, and we carry on our lives. Chronic illness is hard to understand and it is especially hard for those close to us. The spoon theory is an excellent way for them to understand. He is probably just worried for you and doesn't know how to show it. I hope your migraine and sickness pass soon.

Take care

Deb
 

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It must feel really horrible, but it is not a sign of not caring: rather the opposite. I know that my brothers had real problems accepting my father's ill health: they didn't quite tell 'him it was all in his head, but essentially wanted him to be strong, to look after them, so kind of brushed it away. Being mature enough to accept and support chronic illness in a parent only happens when you are able to see them as a person, without seeing them as someone who is there to fulfil your needs. I think this takes longer for boys too! But it means that they love their parent very much. Also, I think one often wants to find a solution so that you don't have to empathise, because empathising is painful: you have to see and believe and experience the pain of someone you love. It's so much easier just to brush it off. So he certainly loves you, but is just going about it the wrong way, and needs to mature a bit perhaps...

xHatty
 
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