So mentally my situation is the following:
I was raised that pain is personal and when you are sick you suck it up and keep going. So, that did not work well for me in the first 5 years of CFS so I decided to change.
I am wondering what level of detail is necessary for family and friends to understand the situation without sounding that you are whining all the time, what is the balance between I need you to understand what is going on Vs I am complaining or venting???
When the symptoms put myself in danger or family I try to be very specific. On those symptoms that affect me only as an individual, I am very vague, but I have come to realize that those symptoms can be fatal and betray you in ways you cannot even begin to think of. So where to draw the line?
Example: I used to read. A LOT!! I have told my family I don't read books because I cannot read. I cannot follow a book. I can read a few sentences in forum ( I know I don't have to explain to you all) but it makes no sense to another "normal" person why I can read some things but not another. Heck is a mystery to me too.
So I read the doctor instructions on Imunovir wrong and was on wrong doses of medication for 4 months. I read that thing countless time, but I translated the information wrong every single time. How do you explain that!!! So even though I told my family I cannot read, they see I do not grab a book, heck I cannot even follow tv sometimes, so what makes them think I can fill out forms or anything to do with reading the right way? Is it that I do not communicate well enough or Is my responsibility to say no to all, in case I am having a bad moment?!?!?
Is it that I don't know how to ask for help properly or the implications of our limitations are impossible to be understood by a normal person? !? Sorry post getting long here.
Example 2 :
I have explosive diarrhea: I do not tell family that I say "my autonomic system is broken". They know I have to go to the restroom when I have to go, but don't know the details of what my autonomic system is not working properly is (cant swallow, digest, poop, pee, sweat..).
Hemorrhoids: I keep to myself most of the time unless it prevents me from regular activities, nausea, dizziness, the very annoying stabbing pains, the burning..... I can keep going all day. They do not know half of the story.
Now I say "I am having a bad brain fog day" I am not sure that is translating properly, so that is where the issues come in. Do they understand anything to do with brain controls are off. I cannot think straight not even my own name??? that probably me doing a Doctor's appointment, even though it sounds simple enough, is beyond my capabilities??
How do I learn to say things in a new way where a "normal person" gets what I am saying without me sounding whining but getting the seriousness of the situation across??!!?!? Where to draw the line?
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CFS implications for family, how to communicate?
Blog entry posted by lnester7, Jul 17, 2012.