Tuesday, June 30, 2009

Raw nerves


Listening to Little Birdy, `Brother' off the Confetti album. How come some people can get all of it into words and music? I'm reeling from dealing with a friends personal tragedy tonight and my emotions feel very exposed. I wonder if those singers go over and over the emotions each time they have to perform. That would be so exhausting. Do they pluck them and pull at them so much during the writing period, that by the time they've performed the tune a few times it's all gone? I guess they get so that they can distance themselves from the original event that germinated the art.
I find little spaces to box stuff up into. Whether it's pleasure or pain. Mostly I think about pulling out the pleasure stuff, reviewing the memory. Mostly it's little things like the sky at sunrise or filled with winter colour. I've a picture memory tonight that's going to take a while to store away, a friends face in transition towards death, and the distress of his partner. I don't know if I can overlay it with the beautiful winter sky I saw as I drove this evening. I feel so inadequate as she tells me she thinks he's got much less time than they said at the hospital. I don't know what to say, because I know she's right. His face was somewhere between life and a death mask and you could read it there in front of you. I don't know how to help.

Sunday, June 28, 2009

At what point do you trade off

For so many years I was almost religious about BGL's and lifestyle. Yet I still had issues with weight and fluctuating BGL's. Now Ive been on a pump for 2 years and I still have issues with fluctuating BGL's and weight. At what point do you trade off trying to live a fairly flexible lifestayle and becoming manic about constantly reviewing BGL's, carbs, exercise, arthritis, sleep, water, alcohol, sex, menopause, work, stress, family obligations, BGL's! I know lots of people have to watch their diet. I know lots of people feel they should get more exercise, but I do think that coping with finger pricks and bolus's and adjusting doses to deal with illness or unexpected high's is just such a constant pain. When I was diagnosed, 27 years ago, they said to me, "oh you don't have to worry, they'll have a cure for this in five years." Funny thing, I've spoken to second generation T1's whose parents were told the same thing 40 years ago.
I'm frustrated and angry. I've had a gutful of constant monitoring. For most of the past twenty seven years, I've been grateful that I'm even alive. But it's getting more complicated, not less. Menopause sets in and that just throws everything all over the place. Everytime I think I know what's going on, something changes. I can't get a stable exercise pattern because my work obligations change too much. Sometimes I'm in the office all week, somethimes I'm flying interstate for a week. When I was in my 30's that was OK, I just dealt with it. Now, I'm just "over it!"

Sunday, June 21, 2009

Diabetic desk johnnie

Friday, my BGL's ranged between 5.6 and 6.5 all day. Incredible. I worked from home, because I had some new furntiure arriving. In between report writing and email checking etc, I rearranged old furniture including emptying a 2m bookcase and stacking all the books to await the new wall unit. I was pretty much up and down from the desk all day. When the furniture arrived I assissted with it's installation and so on. As a result I had almost perfect BGL's, only needing to bolus for the evening meal. Saturday - yuk! My BGL's went down then up up up, sitting between 14.5 and 22.9. Did I have a fever? Nooo, was I eating more than usual? nooo, was I incredibly inactive? No. I was helping unpack removalists boxes at my Mum's new unit. So what else was different about Saturdya - aha - day 3.5 for this infusion set. I definitely get site resistance after 3 days. I changed the set this morning and we're back to almost normal, tho not as good as Friday.

Can I give up my day job and still earn what I do but be physically active all day??? I need a job doing letterbox drops or gardening or being a personal trainer, that pays $100,000 a year!

Umm, then again, at 52 it mightn't be such a good idea..... Actually when I think about it, I couldn't get my BGL's down below 9.8 when we were mountain trekking in Morocco, but that might have had something to do with the chest infection I had at the time. But seriously, I think that desk jobs are the worst possible thing for the health of Type 1 diabetics.

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.