invisible chronic illness

I've been busy sending e-mails to various organisations, trying to get more information about whether there are any blood disorder related support groups. I contacted the New Zealand Organisation for Rare Diseases, who suggested that I contact the New Zealand Leukaemia and Blood Foundation. I have also e-mailed the ImmunoDeficiency Foundation of New Zealand. I'm not really holding out for any sort of network, seeing that cyclical neutropenia only occurs in 1 person per million. But to get in contact with someone else in NZ who is similarly affected, would be really beneficial to my state of mind. There are overseas web-based support groups, and that is my plan B.

I have so many questions, but I'm not going back to the hospital for another month, so I don't know who to ask. I guess that's why I would like to talk to someone who knows firsthand what it feels like. I've been reading books on living with chronic illnesses, but they all suggest joining a support group. Not so helpful. The best of the bunch (so far) is a book called Sick and Tired of Feeling Sick and Tired: Living with an Invisible Chronic Illness. It is a relief to read stories of other people who have the day-to-day problems that I face. There are lots of little things, like having to stand up on the bus while elderly/disabled people are given seats by other passengers. Not that I begrudge them this courtesy, and I certainly don't wish a physical disability upon myself. But sometimes it is painful for me to stand around for long periods of time, especially the day after I inject the ol' Neupogen.

I've also found a good website: www.butyoudontlooksick.com. The author of that site has a great story called, "The Spoon Theory" (http://www.butyoudontlooksick.com/the_spoon_theory/). I can relate to this really well, although she suffers from something different (lupus). Jeremy and I have introduced the terminology into our lives, as a sort of monitoring system I guess. He knows what I am talking about when I say, "I'm low on spoons today, so I need you to make dinner tonight." And it works well for us; I guess it's just the same as saying "I am tired/I am exhausted/I can hardly get out of bed", but without sounding so whiny.

Jeremy is away for a few days this week, back in the Bay of Islands. We made lots of food over the weekend so that I would not be tempted to have toast for dinner. I am starting to get used to being home alone at night, but I don't much like it. I never sleep very well.

This week, all my spoons are going towards getting out of bed (often a whole spoon in itself), going to class, coming home, editing manuscripts, proofreading, eating dinner, and making my way to bed. There isn't a lot of room for me to do much else at the moment both because my schedule is full and my energy is low. I guess it's all about prioritising.