Weirdly this week I have found myself having to defend and explain why I get tired. Someone I had been talking to didn't mean any harm, but when I replied to their "how are you" question with "I get very tired very quickly", they said "well I get tired, everyone gets tired" and they kind of dismissed my response. It was odd. I went on to explain in more detail how I feel and why the treatments have caused my tiredness. But those words fell on deaf ears. I think I have hit the "well you look alright" scenario that people with an illness get. It felt so strange giving a justification for feeling the way I do. I am considering ditching the effort that I put in to making my face look presentable and instead going barefaced with a sign that says "having treatment for cancer"!!!! My beautiful sister in law who is on dialysis and waiting for a kidney transplant always makes herself look gorgeous and sophisticated, people look at her and say "but you look well". You stick your slap on your face, you smile and laugh, show everyone that life carries on, go home and collapse in a heap away from people's eyes. You don't want to shove your illness down people's throats all day everyday, so you put in the effort to look OK. But then because you look OK people think there is nothing wrong with you and you must be a hypochondriac if you mention any symptoms!! Conundrum or what?!!
My answer to all this is to keep my pride and keep my slap on, but I have deduced that the words "tired", "fatigued" and "exhausted" just don't cut it. They are too commonly used and don't explain the actual way poorly people feel. Breathless, dizzy and a bit sick, your plug gets pulled, your batteries run out, you need to lie down now, you can't move any part of you, talking is too hard. But you keep smiling and saying you're OK. This happens daily, repeatedly. So I have found a new word. I am going to use "Defessus" from now on. It is Latin for Tired, but I feel has much more depth about it. "How are you?" "I'm really suffering from Defessus right now", or "I'm doing well but Defessus has got the better of me"!! I'm sure that will evoke a better understanding, without it ending up sounding like a plea for symphathy.
Every person that has an illness please feel free to introduce Defessus into your vocabulary!!