Journal of IiME Volume 3 Issue 1 www.investinme.org Forget M.E. Not (continued) Having missed altogether four years of schooling I may not have received a formal education, nevertheless I have learnt many invaluable 'life lessons' I don't believe are to be found between classroom walls, for example tolerance, empathy and open-mindedness. I don't hold much with the enriched sufferer theories however: "Great, I've suffered unrelenting pain for seven years, but I'm gonna be a better citizen." Books, newspapers, radio and some television programs...these have been my umbilical cord to outside life, a world I often don't feel a part of. I have reached the conclusion that should be a number one priority although it is generally taken for granted, even by me; in the rare instances I catch a glimpse of it, feel the energy in my fuel tank, I am like a compulsive spender, spending the last drop plus more until I am back in bed. In my world you pay for your fun. Sometimes it is worth it—often it isn't; we have no problem with motivation; quite the opposite, we are our own worst enemies. My family have been wonderful, after all an illness like this impacts upon every member...Mum's had to give up work temporarily, no more spontaneous family holidays, siblings take a back seat. It's hard being a teenager, trying to assert your individuality while so forcibly dependant on people for practical care. Of prime importance to adolescents is the need to feel accepted, normal, "one of the pack". This is impossible to achieve when you mysteriously disappear every day after recess, receive extensions on assignments and have to decline invitations to most parties, sporting activities etc. I am lucky to have a few "healthy" friends who are supportive and as understanding as they can be, who visit when I am bedbound and no longer ask if I'd like to go on interstate hikes. I also have strong friendships with adolescents Invest in ME (Charity Nr. 1114035) Page 13/76 For years I was going to be "all better next week". Now I know better, I know the statistics and am aware that I have moved into the so-called chronic stage with little chance of spontaneous remission. A cure may be just around the corner but I have to face the fact that I may be sick for a long time yet. It's not AIDS, although it's similar, you can feel equally as ill only it doesn't kill you. Not cancer either. I'm not dying or anything drastic like that. It's M.E. Don't forget M.E. with the same illness—we can provide mutual support & encouragement...most of all we can 'Lounge Lizard' together. When you are chronically ill, you tend to lose your identity to the illness; it defines who you are and what you are capable of...particularly in other people's perceptions. Sometimes I'm tempted to yell, "What about me the person?" I have thoughts and feelings aside from those associated with the illness, if not the opportunity, nor indeed the energy, to express them. All the normal adolescent turmoil is experienced, perhaps magnified and without resolution, for how do we assert our individuality if not through experiencing life and interacting with a wide variety of human beings...certainly not lying in bed, doing the rounds of specialists once again, just in case, just to make sure they didn't miss something "fixable".
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