I don't know if any of you have family members that don't understand you conditions or their symptoms, side effects or associated flare ups and sudden floopiness.
My grandma and grandpa continuously tell me that its all in my head; "if you think you can be better then you will be, 'mind over matter'". They are both busy bodies who want to know everything all the time. They want to know our friends, what we get up to and they control when my mum can drive (they hold it over her).
We don't want to telll them these things and we would like to keep them in the dark about everything but unfortunately they just turn up out of nowhere which makes this difficult.
They also tell me that "its the pills that are making me ill and that I should stop taking them all which would fix everything". So naive! They don't want to know, knew it previously and can't remember or just paranoid (which my grandma is!!) because these conditions are the reasons I'm on medication. The doctors don't just help you to pop pills (and if they did I'm sure they'd give me some better ones) it's just that my conditions aren't under control because we're still trying to find the right meds, dosage and frequency of my pills.
They don't have any understand let alone basic understanding of ANY of my conditions. It's not just them, my sister loves me and she has a little understanding of them but she doesn't know what they are or my full flareups/episodes of pain, fainting, sickness, etc... Nones of them seem to want to understand. My grandparents just like to be involved and make me feel bad about being ill and needing help to go to all my hospital appointments; they say "we're happy to help when ever you need us" but when we need them it's a hassle, they're always late, almost always grumpy (which makes it difficult in the car), make snide cmments about my weight, my illnesses, how much of a hassle I am to them and how it makes them depressed...
THEY'RE depressed?!
All they're doing is driving me... I don't let them come in to the hospital appointments because they go of subject, talk about how proud they are of my uncle, what conditions they have, etc... but when my mum and I come out they want to know everything that was said and one which causes me to wait longer while we explain it but I'm always in a lot of pain after them so I just want to come home and when we tell them that it seems my grandma spites me by going on bumpy roads (when there are routs home that don't involve bumps) and (she's an AWFUL driver anyway - she drives on the wrong side of the road, swerves, goes through red lights even when the cars start to come toward us) she even stops to go shopping leaving me in the stuffy car in agony.
Thoughtless!
My mum is thy only one who seems to want to understand, helps me when I can't move and when I try to explain how I'm feeling (e.g. in pain, floopy, drained, feeling faint, needing breaks/sleep etc...) my mum tries to help as best she can and she buys me sweet and salty things for when I'm floopy.
Thing is; these people are part of my family, if they're not bothered about it what does that say for everyone else in the world (not related to me).
It's hard for me to do a lot of things so I do need help but... Will people want to understand? Will they pity me? Will they help me?
I wish there could be some seminar to teach people about my conditions or anybody else (including you), (even myself because I don't really know THAT much about my conditions and what the effects are on me and how it will affect me in my lifetime) so that family, friends, people you come into contact with, and strangers will have a better grasp/ comprehension of them and us because I'm not my conditions but my conditions are part of me.
*huggles* for everyone!!!
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