Type 1 diabetic badly controlled but getting there. My issue is no matter what you tell the diabetic nurses etc ...is they do absolutely nothing to help..its gone that far now I refuse to see them anymore...I am trying to control my glucose readings the best I can with any info I find online, and reading my Dafne books and notes. Deep down I really don't care if I am high or low just move on to the next test and see what happens..I don't know if the way I am feeling is sort of normal ...
I just don't know
- Thread starter powerley
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I understand how you feel, my teams in 3 different countries (UK, Australia and NZ) aren't that helpful, but they do act as gatekeepers to useful T1 technology. In particular, access to libre and (if you want it) pumps. (And occasionally they make the odd useful suggestion which I am free to try or discard). And to be fair, as a female, the UK team got me through two T1 pregnancies, though I appreciate that isn't relevant to you.
Plus you 100% need the eye tests, because diabetics regularly used to go blind, and modern eye treatment means that this is now pretty rare. And other tests are useful too, eg they pick up stuff like UTIs which I for one tended not to notice.
I used to dread going to my clinic when my Hba1cs were mediocre (that's putting it politely) because all they did was tell me to improve my control and make me feel guilty about my levels. But when my levels were particularly mediocre I did try a bit harder afterwards. (In the precgm days I found that extra testing improved my levels).
Do you have a cgm at the moment? If not then that is a powerful reason to go back to your clinic, because they are very useful pieces of technology and the new eligibility rules in the UK (assuming you are there) mean that all T1s are supposed to be entitled to them.
So while I totally sympathise I would recommend that you grin and bear it, because of the tests and because of the technology, even if you feel that the nurses don't do anything useful in terms of advice. And I have had some helpful nurses amid the less helpful ones, so maybe you'll be lucky next time you go???
You sound as though you are suffering from a bit of diabetic burn out at the moment? That does seem to be common unfortunately. Unfortunately high levels tend to impact on your mood as well as your health, so it can be a bit of a vicious circle.
Lots of virtual hugs from a fellow T1 (diagnosed in 1970)
Sounds like your biggest problem is that you’re not getting the help you need. With all due respect to nurses, they are not doctors and generally don’t have the training and experience necessary to problem solve a case like yours. Find yourself a good endocrinologist, even if it means paying out of pocket. Get on a reliable regimen where you’re in control of your blood sugars and then you’re free to go back to NHS or whoever. Do not settle for bad advice or no advice. Your life is at stake and only you can fix this.
