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?
CFS implications for family, how to communicate?
Blog entry posted by Seven (formerly lnester7), Jul 17, 2012.