I am reliant on my family to care for me, and am not able to a proper mum to my daughter. My symptoms have, by and large, stabilised, and on most days I am now able to venture out of bed to my living room.
This is very exciting as it means a change of view and I can interact with my parents.
But having just seen the headlines, my heart is once again sinking with the feeling of "here we go again." You see, because CFS is not properly understood, there are legions of people out there who will tell you that we are making everything up.
They'll say it's all in our heads, all a delusion; that we could get better any time if we just got our minds right.
So I was excited to hear that Oxford University had undertaken a 2 year study into CFS, and was looking forward to seeing the results.
Chronic Fatigue Syndrome Examination Worksheet: Disability examination worksheet from the Department of Veteran’s Affairs used to establish a positive diagnosis of CFS.
Helpful in understanding the presentation of the condition.
Once I was standing I felt dizzy and like I was made of jelly, and would have to sit down again rapidly before passing out.
I couldn't bear any lights or noise; speaking on the phone was intolerable; my whole body was in weak and in pain so that even holding a fork would hurt my wrists.