The Injustice of Diabetes

How are you travelling with diabetes? Yesterday was a crap day diabetes wise for me. In the scheme of 38 years, it was not a great one, not the worst, but definitely not the best. The day started with a spike in my blood glucose levels after breakfast. I have changed to a “Thins” bread which is only 15 grams of carb total. I was eating gluten-free bread after a period of protein breakfasts, that I could not sustain. However the gluten-free bread just seemed to cause fast spikes that were unpredictable. The discovery of the Thins means I can eat a sort of bread breakfast, with low carbs, and it seems to have been working much better. My diabetes is very unpredictable and often does things that really don’t make sense and are unfair. A combination of having it so long, perimenopause, rotten pump sites, stress and gastroparesis I think. So yesterday I got a ridiculous spike after breakfast, figured it was the pump site and changed it. This meant when walking my son to school I was unsure how it would all go. It actually went quite well, and slowly came down, with a rush down of course once I was at home. I dealt with that and then the swing back a little. By lunch I had pretty stable levels. So my working day was basically doubled up with working on diabetes in the background all morning as well.

On the way to an appointment for my PhD after lunch, I remembered to call the doctor for my latest blood results. They put me onto the nurse. “Well” she said, “oh there are a lot there….ummm your blood chemistry is all good, your liver function is all good, your thyroid is all good, your lipids are all ok”. Well that is great I thought. “Your HBC” (???do you mean HbA1c or A1c, I am thinking?) “well the doctor wants to talk to you about that at an appointment”….”I beg your pardon” I said, “what is my HbA1c?”. “Oh it’s the sugar in your blood” she said, but I was already starting to almost shout “NO NOT WHAT IS HBA1C, I HAVE HAD TYPE 1 FOR 38 YEARS AND AM A DIABETES EDUCATOR I KNOW WHAT THAT IS – WHAT IS MY RESULT?!!”.  “Oh she wants to talk to you about it” said the nurse again. “NO YOU ARE GOING TO GET ME THAT INFORMATION, NEVER IN ALL MY YEARS HAS ANYONE WITHHELD THAT FROM ME AND IT IS MY RIGHT” I yelled. “And by the way what are my iron levels?”. “I don’t think they are here” she muttered “and your vitamin D just came in so she has not looked at it”. “Well, I will call in a day or 2 for all of those” I finished. I hung up…I was almost in tears. I was SO angry. Does she realise what I go through for diabetes, I was thinking? So many things racing through my head – how dare she, I do over 20 finger pricks a day, I wake up to at least 2 alarms, often 3, every night to prevent unexpected spikes in my BGL, my fingers are black, I eat very little of anything due to my gastroparesis and other stomach issues, I do not eat crap or drink, I walk every day, I work so very very hard at this…..and my last HbA1C was 8.3% so what the hell is this one if she wants to talk to me??????? Then the phone range, and it was  the nurse. ‘” I went into her and she had a look at the vitamin D and it is fine, and the iron studies are here and they are fine, and she is ok to give you the HbA1c (although she again said some strange version of this) on the phone (REALLY, I screamed inside) -“yes” she said, “and it is 7.4% “…..

WHAT THE HELL????

7.4!!!!!!!!!!!

That is lower than last time and so very very good for someone who a couple of weeks ago had a night of being awake all night with a strange 19 mmol night where things would not come down and was ill all the next day. That is the result of someone who spends so much time managing diabetes under extraordinarily difficult conditions. I was gobsmacked.

After these events, the afternoon went ok but by dinner, my BGL was slowly rising again. I eat very little carbs after morning tea, if any. I generally eat none with dinner. By 8.30 pm I was going back up…for no reason….so after standing in the kitchen nearly crying, wondering if I should bolus more, wait it out and end up needing to change my pump site at 10pm at night, or just cut my losses and do it now – I went with the latter. Still it sat stubbornly high. By 10.30 pm when I was more than ready for bed after a 5am get up time and a week with painters in my house, us sleeping in the lounge and an evening moving furniture back into the bedroom, it started to crash and sit too low for going to bed, despite glucose. By midnight I was finally in a safe place to go to bed. Everyone else was of course snoring away, except the cat who snuggled with me (thank goodness for pets in times of late night diabetes crises).  By this time I was almost crying with exhaustion and loneliness and the injustice of it all.

Diabetes does not belong to anyone but YOU.  Diabetes is NOT fair. I remember when I was a young adult and had been making up my results for my Endo (who is still my wonderful Endo today) and I finally broke and told him in tears. He said to me “do you think we are stupid?”. Of course they were in the early days of HbA1c back then and knew that this did not fit with my magical record books. Yet he had said nothing. It was my turning point. I realised that this diabetes thing was my burden but also mine to manage how I wanted to. The outcomes were all about me and nobody else. I was not there to please other people and certainly not my doctors. Having information is vital to your ability to manage diabetes. It helps you see where you are travelling, and where you have been. Numbers are just numbers, but they are YOUR numbers and nobody has the right to withhold this information from you. There is enough injustice in the daily rollercoaster of diabetes without those who are supposed to be supporting you (and who clearly have far less knowledge than you do about diabetes) making you feel powerless.

Helen

6 Comments

  1. Robyn Hodge on March 7, 2018 at 10:31 pm

    I appreciate you sharing this, Helen. So validating. I can’t believe 5he nurse would have the cheek to withhold your results!!

    • Helen-Edwards on May 14, 2018 at 2:48 pm

      I know right!!! Crazy stuff – thanks for reading

  2. Rick Phillips on March 8, 2018 at 1:16 pm

    Helen,

    If it made sense it woudl be something else. I once read that there are 200 things that can impact your blood sugar. I am determined to try all 200, yeah some of them cannot happen to me. But I am an over achiever.

    • Helen-Edwards on May 14, 2018 at 2:48 pm

      so very very true Rick!!

  3. Trish Mokryj on May 22, 2018 at 7:55 pm

    Hi Helen,

    Do you get a print out of your blood tests to keep and compare?

    I notice on the bottom of the sheet it says you should be under 7% unless you suffer hypoglycaemia in the past 3 months.

    I always suffer hypoglycaemia!!

    My last Hba1c was 8 🙁

    Trish

    • Helen-Edwards on May 28, 2018 at 10:32 am

      Hi Trish – no I don’t generally do that. I just chat at the doctor. I think most of us with type 1 diabetes will experience hypos. It is part of it. I wonder what that statement means – probably targeted towards people with hypo unawareness or who have a lot of hypos. Really now we aim for individualised HbA1c based on personal circumstances as well as guidelines

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