Experiences from a newly liberated pump virgin,

Hey the last entry was a relatively concise (considering my frequent attacks of verbal diahorrea) potted history of me and D.

I was thinking of all the things I wanted to say, and what life is for me at the minute and I wanted to get it all out, so this entry may be a long one, it was sparked by yesterday’s 14K event and a couple of blogs that had touched me and set me thinking.

At that moment at 9pm BST (4pm EST) when I was inscrutably sure that I wasn’t alone. I knew that a significant number of ‘ordinary looking’ people were going through the same process as I was.

I thought about the hours I have cried wanting help, wanting someone to take it away, wanting to not have to be ‘responsible’ and how despite the fact that I have recently been diagnosed with NLD (Necrobiosis Lipoidica Diabeticorum, an apparently rare skin condition, which of the small percentage of people who get it, a large percentage are or become diabetic) and being tested for RA/other inflammatory conditions and that I cannot conceive, currently I am ‘ok’. Hey I’m not doing cartwheels or the conga but I am Ok and I am not alone.

Limbo is a numb kind of place, it can go either way to being interminably frustrating where time stands still to fantastically contemplative where the possibility of hope can bloom. I try to be a ‘cups half full’ kinda gal, I don’t always succeed, but I try.

I thought about where I was 3 months ago, an A1c of 9.8 inspite of my best efforts, no possibility of a pregnancy, on the verge of a full blown burnout despite the good care of my medical team, and then I got my pump which has already proved itself far beyond my expectation.

It has literally changed my life beyond recognition to me. I feel more incontrol, and confident. Unlike the image in my mind of an unsightly ugly scar on show all the time, reminding me of my failings, I actually feel as though I want to show it off, this pretty ugly little blue box, like a war-wound that I am proud of, it has saved my life. I want people to know about it, about me. It reminds me that I have made the changes, I have done the work, I have proved those so quick to judge me as non-compliant wrong. I did the work, I have effected this, I am currently winning.

It is also a talking point, particularly with amusing wardrobe malfunctions, like when it dropped full height out of my bra in our local Post office, swinging wildly on the tubing as I tried to grab it ha ha. I have been accused in the past of many things which were directly attributable to The D, but I never had the N*ts to explain that because I look healthy and fit. That I do have a chronic condition, that inside me there is a battle raging every second of everyday and sometimes it’s exhausting, sometime it beats me, some times we draw and on occasion I beat D back into its box. I am not malingering when I can’t get up because of a night time hypo or have to reneg on a meeting because I feel like puking with a High.

I hope that the Diabetes Police and those with a prediliction for sanctimony don’t read this because they will not share my experience that I have found D to have limited my life in all sorts of ways, I never was sporty but there are days when I am just knackered, since the pump I have discovered that even a 500 yard walk to the shops is enough to plummet my BG’s through the floor sometimes, I never knew that on MDI. I accept that D impacts my life and has dictated at times where my life has lead, and sometimes I find that some blogs have made me feel like a failure (unintentionally) because i have ‘let’ D win if you see what I mean. I am not bitter about that any more but I do find it quite hard with the barrage of ‘I haven’t let D change me or stop me doing anything’, because I don’t buy it. By it’s nature it must change you and tweek the direction of you life’s course.

When I started pumping I was so scared, I suppose not unlike the newly diagnosed, I had to relearn everything in a sense and boy have my fingers taken a pounding with the constant checking, but I would do it over and over. I have had a slightly stressful but highly amusing incident in an airport, numerous hysterically funny wardrobe malfunctions, one minor site infection that I had to DEMAND a prescription for from an uninformed GP, a male friend of mine noticing it tucked between my ample gifts, asking what it was, and then realising that technically he shouldn’t have known it was there as it wasn’t immediately obvious without specific studying if you catch my drift… ooops caught out man, the oh so romantic disconnection before intimate moments, my third nipple as the flexilink infusion set has been referred to, the icky feeling of inserting the cannula by hand (praise be for the introducer), the heinous allergy I had to the rapid d infusion sets (looked like i’d been mauled by an octopus), but I wouldn’t change any of it.

At my ‘plug in’ we filled the forms, signed the contracts, I cried alot. I can’t exactly put in to words why, it was like this ‘could’ be so great and I can’t believe this is happening and finally there are people who want to help me, it was a relief and scary all at the same time. Then I got to opening the box and exploring.
My DSN was talking me through everything, and I was confused… the screen didn’t look right. turns out the display was broken ha, thought it was me :os
So we used the backup.
It took me 5 whole minutes to put the first set in, I mean syringes and pens, no problems, but this was scary and new, and I never knew that the fine hairs on your belly would be so sore as the stick pad pulled them or when removing the set, I couldn’t figure how the hell I’d get it off. A cotton bud and babyoil is very good I’ve found.
I spent the first two days struggling to keep my BG above 4mmol, they recommended to start that I just tried to keep it between 6 - 18mmol, bearing in mind that it had been ranging from 0.4 - HIGH (which is +32mmol)
Everyone kept warning me the honey moon wouldn’t last but generally it has, I have had about 5 BGs above 20mmol in 3 months 3 of those were when I had the site infection the others were pilot error.

So having been afraid of the confirmation, I suppose you’d call it, to myself that I was indeed stuck with D, as if I hadn’t realised after 25 years, I find it all quite cathartic, a new acceptance that you always have to try to fight, not The D exactly but the negativity that it’s so easy to feel consumed by, the Highs/lows, the complications, the general crap. That to continue to learn can only be positive, that to make others particularly those in the same boat feel judged is plain insanity and that I FINALLY have the good sense and grace to know when and what I can do according to The D, not inspite of it. I would have loved a high powered job in the design industry but the stress made it almost impossible.

So you see, I am D and D has me, but I won’t lie down and take it! ha ha

Wow! Very well written. I don’t understand pumps but you did keep my interest and I learned a little bit. Good luck to you. I hope you two continue to get along. :slight_smile:

Thanks Cathy,
I love writing it down, I do try to see the humour in my situation and if along the way I get to talk with great people like you, it’s a bonus. Before I decided to take the plunge as it were, I didn’t know anything abut pumps, it’s a real steep learning curve but a good one. Thanks again x

Ha ha, I can see it now, Bad bruno! baaad! ha ha ha
If ya didn’t have a sense of humour you could go mad couldn’t you? I was just reading my personal journal, and I might post it later about the magnetic attraction that the tubing has to doorhandles and my cats devilish interest in the springy coilyness of it.
For some reason the Drs said to keep to my belly/torso for the minute, so the max length I need for the minute is 60 cms, whats that in sensible speak… 23.5 inches or so. I do get some funny looks when I’m out though and have to rummage around in the top of my T-shirt wayhaay!! ;o)

I enjoyed reading this! I know, D can be frustrating, and it is so different for everyone. Even insulins act different for different people. Good for you for trying something new. I can’t wait to use my pump. I am in line with an appointment at our local Diabetes Center! Hopefully you can figure out your basal rates to reduce the bad Hypos soon. =)

Thankyou, glad you enjoyed it. Insulins a bit weird like that isn’t it? I never got on with novorapid until they changed my long acting to levemir, then it wasn’t too bad, by comparison, but still not as fab as the pump.
OOh how exciting, when are you due to start pumping then? Is your Diabetes centre good, do they know what they’re on about? Hope it all goes swimmingly x

Beautifully written. May you have good days ahead!!!

Your thoughts here on “paper” read very well :slight_smile: - I couldn’t agree with you better on many of the things you wrote.