Dealing with diabetes burnout & the calculus of diabetes
Do you feel like you are paddling so hard under the water some days, but nobody can see all the energy you are expending just to stay afloat? Most people I have spoken to living with diabetes over the past 15 years say they do. And I know I do.
Take my current situation. I have been on an insulin pump for more than 14 years to try and deal with difficult morning highs and hypos after meals, where I was splitting injections and having up to 10 shots a day. I then discovered I have gastroparesis which I have lived with for more than 12 years. If you have not heard about that, it is one of the complications of diabetes that is less commonly known about than some of the others, but quite commonly experienced. The two are not happy bedfellows.
You can read more here about the facts of gastroparesis.
In a nutshell, gastroparesis is nerve damage in the gut which leads to delayed emptying of the stomach contents. For someone with type 1 diabetes in particular this can be a nightmare to manage, as the rules of insulin and food peaks and matching just don’t work out. I can often be seen sitting with my head in my hands, just wondering what the hell happened and what to do next!
If you live with this condition you will know all about it. It varies in its impact with some people experiencing very little discomfort or issues. I have severe delays but they vary from day to day as well. I take all sorts of potions designed to help shift the food from one end and out the other (may be TMI for some of you!)
All of this adds to the fun of the calculus of diabetes. The definition of calculus according to Dr Google is:
1. the branch of mathematics that deals with the finding and properties of derivatives and integrals of functions, by methods originally based on the summation of infinitesimal differences. The two main types are differential calculus and integral calculus.
2. a particular method or system of calculation or reasoning.
So number 1 sounds precisely like what you hear when your doctor tells you that you or your child has diabetes, or your educator talks about new therapies, or you try to nut out why you or your child had that series of high or low blood glucose – it is essentially “blah blah blah blah, nope not getting it”.
Number 2 is the whole basis of diabetes if you read a diabetes text book or listen to a (well meaning) doctor – but sorry guys but there is no particular method or system of calculation or reasoning when it comes to diabetes.
I have had it up to here lately with trying to predict trends in my levels and am looking at biting the (expensive) bullet and getting the Dexcom to work with my pump. Do any of you use a Continuous Glucose Monitor (CGMS)? And how do you find it?
Maybe with the two machines talking to each other they will work out properties of derivatives and integrals of functions, by methods originally based on the summation of infinitesimal differences of my blood glucose…because I sure as hell can’t.
xx
Helen
Hi Helen, could have written this word for word myself! T1 for coming upto 28yrs, gastropareasis also. Mornings are always really hi then have massive hypos (1.0 to 2.4) even my hypo awareness is going down hill. Afew other complications also. Diabetes really does suck! Im only roughly around 8 to 10 injections a day seeing another new endo end of April to discuss a pump.. xx
Hi Renee – snap! The pump definitely helps, not perfect but nothing other than a new pancreas would be perfect! Good luck with the transition and please ask any questions xx
Helen, I am sure many of our members who are parents of children with type 1 diabetes can really relate to this #dblog. We often share stories of how frustrating and entirely inexplicable diabetes is. In our Closed Group, we have frequent discussions about management. Parents share tips and suggestions, but mostly share their bewilderment about how doing something exactly the same way does not mean it will have the same result. Thanks so much for sharing your own experience.
Thank you Helen for that insight, it helps others like myself to know we’re not alone in our battle (or should I say war).
My worst extra complication apart from loss of central vision in the right eye, and other minor ‘extras’ is my severe and continual pain (rating to 8 or 9 /10 if not controlled).
The main pain is from my Sternum which has never healed after an artificial aortic valve was inserted. The surgeon then tried to re-wire it several times with no success, so I went to Sydney and imported some ‘Sternal Talons’ for a top surgeon to insert. this stopped 90% of the movement but the damage was done and the sternum will never heal inside.
So if I turn over in bed – intense pain, same if I get out of bed, shower, sit too long, travel in the car more than 15km, twist in the loo to wipe, cough, laugh, bend over ….. you get the picture.
My pain is now mostly controlled by a Norspan pain patch, but I went through hell trying to find a pain killer combination that didn’t knock me out completely, yet controlled the pain. I tried every pain med possible and settled for the Norspan dose which controls the pain at rest, but doesn’t fog my brain. This still lets me get out of bed to do a bit then when the pain get’s too much I go back to bed again to ease it. Any time I have to go into Adelaide (from Salisbury Park – 25km away) I have to take an Endone to control the extra pain.
Any severe pain increases BSL’s, so you cal imagine what is happening to them, especially when you add the sudden intense pain from my hip which has a torn cartilage which can’t be repaired.
I use a pump overnight, Lantus for my basal, and like you 10 or so reading and during the day, but I use a pen during the day.
Being an invalid pensioner I can’t afford too many sensors for my pump, and I only use one when things go really bizarre.
Cheers all!
Danny
@Danny so sorry to hear about your pain Danny. And very impressed by how you are dealing with what life throws at you. All the best, wishing you some good days.
@Danny so sorry to hear about your pain Danny. And very impressed by how you are dealing with what life throws at you. All the best, wishing you some good days.