Angry/Occupational Therapy (Part 7)
Posted on 2002-11-19
Sometimes it is suprisingly easy for me to block out how I am really feeling, and other times it is virtually impossible. One minute I'm seemingly plodding along on a relatively even keel, and telling myself that there isn't much more I can do, except know that I am trying to get better..... then wham..... infection hits me again and knocks me sideways, making me start doubting myself and wondering..... questioning myself and my actions.
Am I to blame for being so sick????? Is there really a scientific explanation behind all this, or is it really in my head like some doctors are trying to imply????? I know at the moment there is no diagnostic test for M.E/CFS, but is that any reason to say that my symptoms are psychosomatic?????
My Occupational Therapist came to see me at home today, and after next weeks session she doesn't plan on seeing me again for 3 months. Basically shes told me that I need to adjust my routine (routine - what's one of them then???), and increase my level of activity, but unless you actually have M.E. yourself you have no idea how ridiculous that sounds.
AYME suggests that GET (Graded Exercise Therapy) and CBT (Cognitive Behaviour Therapy) are more suited to someone who is at approximately 70% on their ability scale, (in other words pretty much able to lead a relatively 'normal' life without any fluctuation in the severity of their symptoms), however, I am only at 30% - 40% most of the time. Surely by 'rushing' and 'pushing' my treatment my doctors are delaying my recovery????? My body and my brain cannot cope with this rollercoaster of emotions..... anger..... hurt..... sadness..... pain..... confusion..... despair *sigh*
Maybe it would be easier to pretend that I'm 'normal' and completely healthy - that seems to be what the doctors want. At the moment I'm being treated as a statistic, not a human being.
It feels as if the medical 'professionals' want me to say "heck it doesn't matter that:
a) it's taken me an hour to wash and dress myself,
b) that I can't cook a meal on my own or go out of my house unsupervised,
c) that I feel like bursting into tears for no reason,
d) that my heart feels like it's about to jump out of my chest,
e) that I feel like I'm being suffocated half the time because I can't get enough air into my lungs,
and
f) that I can only eat certain foods because my food allergies wont let me enjoy a decent meal"
But all of these things do matter to me as its these things and many more which prevent me from leading a normal life!!!!!
I don't want to have to keep fighting, but I don't want me, (and fellow M.Eers), to carry on living this half life either.
I just feel so angry and sad tonight.....