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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Current Book to give to family on why I am they way i am?!

place

place

Be Strong!
Messages
341
Location
US
Serously, just had huge fight with mother about how I don't want to have a relationship with her because I won't go out to dinner with her at night. And if I do make plans, I often break them. So now i just don't make them and she just doesn't understand.


I do work, easy-ish job, only 30 or so hours a week (I think, I should clock myself). I know the next sentence will not match the first sentences but… I run a mid size company that allows me to be flexible in my work hours. So I come in late if I need to sleep, I work Saturdays and Sundays if I go home early on the week days. My mom seems to think I work tooo much and I am chosing work over socializing.

Its when I finally get home, I need to rest. Ughhhhh WTF does anybody have a good current book that she could learn from?
 
SOC

SOC

Senior Member
Messages
7,849
place said:
Serously, just had huge fight with mother about how I don't want to have a relationship with her because I won't go out to dinner with her at night. And if I do make plans, I often break them. So now i just don't make them and she just doesn't understand.


I do work, easy-ish job, only 30 or so hours a week (I think, I should clock myself). I know the next sentence will not match the first sentences but… I run a mid size company that allows me to be flexible in my work hours. So I come in late if I need to sleep, I work Saturdays and Sundays if I go home early on the week days. My mom seems to think I work tooo much and I am chosing work over socializing.

Its when I finally get home, I need to rest. Ughhhhh WTF does anybody have a good current book that she could learn from?
Click to expand...
Why don't you just send her here to read for a bit? Maybe she'd figure out you're doing pretty darn well for a person with ME/CFS and get off your case. ;)
 
lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
SOC said:
Why don't you just send her here to read for a bit? Maybe she'd figure out you're doing pretty darn well for a person with ME/CFS and get off your case. ;)
Click to expand...
that's an excellent idea! But in my view, a good option would be to hand her the canadian consensus criteria, explaining the symptoms of CFS and the Primer for Clinical Practitioners from IACFS/ME, that explain biological alterations found in CFS, treatment, etc. Here the links:
canadian consensus criteria : http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocumentFull.pdf
Primer for Medical Practitioners: http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0=&tabid=509

I have the exact same problem than you with my family and I understand you by heart, buy they are not ready to read anithing that I handle them, I hope that you´ll have better luck, hugs
 
place

place

Be Strong!
Messages
341
Location
US
Soc- Thanks so much. She is not good at the Computers and the internets. But I can print out select stories for her to understand that I may be doing well today but in the drop of a hat could be bed bound. Pacing is the number one issues we need to keep.

Lauluce- Along with the post, this would be good to give a definition. It is a true picture.

Thanks for the help guys!
 
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