Wednesday, June 17, 2009

Type 1 - the invisible disease

Ugh! I don't like it! I look at the angry red and purple patch where I have just removed my last insulin pump infusion set. Every now and then I get a site that has bruised and bled, probably because I've dropped the pump, subsequently tugging on the insertion site. I stuff up the next insertion, as I remove the cap off the steel insertion needle, the whole unit comes away, leaving the needle part stuck in the spring loader and the nylon infusion set dangling uselessly in the air. Oh well, scrap that one and start again. It's 6pm on a cold winter night. The tiles on the bathroom floor bite my toes and I'm thinking of the chicken casserole I've got in the fridge ready to reheat.
It's one of those nights when I'm just fed up with it. Yesterday the bright young trainee at the pharmacist chatted to me while I waited for my scripts. "Oh I've got a friend with a pump," she says. "She says it's much easier than needles."
"Well, yes & no," I say to her and we enter a discussion about the realities of doing finger prick blood tests and the way that you need to do more with a pump, than you would with needles. I do twice the number of finger pricks with the pump, than I did when I was doing 4 needles a day. I appreciate the conversation, it allows me to feel that someone is interested, that my disease and its subsequent lifestyle is not invisible.
Today the stress and uncertainty of work get under my skin. I live alone and am solely responsible for my financial situation. I've got a mortgage to pay and car payments so that I can have reliable transport. Each month, my various medications and support treatments cost me $100 or more. My role at work means that I have to travel interstate, always calculating how much insulin, how many pump infusion sets, when and where & what type of food I'll get as I fly thousands of k's arriving at hotels late in the evening. Recently I found that because of work pressures I didn't have time to get to my usual chemist for testing strips before flying interstate, resulting in a tense search for a chemist that could supply the strips, in an unfamiliar city. Because I look healthy and people who know me, know I exercise and eat well, living with diabetes becomes invisible. The fear of becoming unemployed and unable to pay for a high level of quality treatments, let alone the mortgage, becomes a constant stress. I'm not a victim & I refuse to become one. I don't want to live on a disability pension, or lean on others for daily support. I don't expect others to make excuses for me and I would be horrified if I found they were doing so. But sometimes I just wish I could have a month off from worrying about food intake and insulin balance and having enough supplies & enough money to get them.

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