Hello! Who are you? And tell us a little bit more about your diabetes.
I was diagnosed when I was 9 years old. It has been a really tough journey throughout the years, especially because of the complications I got. I’m fighting with severe neuropathy, permanent feeding tube over the smaller intestines due to gastroparesis (stomach paralysis) and I I’m wheelchair bound. My diabetes broke down a lot of nerves and muscle tissue which made me unable to walk around normally.
I never hid my diabetes, but since my glucose levels were never manageable I got a bad burnout and depression. I’ve been in hospitals a lot of times because of ketoacidosis, dangerously low sugar levels and complications. This made my life often unbearable. Luckily now I have good doctors, an amazingly good working insulin pump and proper helping aids. Life got a lot more easier and manageable, just like my glucose levels.
Mostly emotionally it was a hard time – my parents were often crying because they almost lost me several times. I am still scared that I maybe will die a lot sooner than I wish, but it has now given me strength to make every day count and spread more awareness. But mostly support and love to other diabetic warriors who are going through the same things.
“My diabetes broke down a lot of nerves and muscle tissue which made me unable to walk around normally.”
How do you treat your diabetes, did a lot change over the past years and are you able to manage it well?
Currently, I use insulin with a Kaleido insulin pump, a Dexcom G6 CGM, and lots, I mean LOTS, of glucose tablets. Haha! I take Fiasp insulin. I went through so many before; Tresiba, Novorapid, Humulin, Actrapid, Levemir, Novomix, Insulatard, …. Almost every possibly existing kind!
Over the years a lot has changed. I went from an active girl that went to college to a girl that spends most of the time in her house. Diabetes tore down my physical health drastically, but it also taught me how to enjoy and appreciate the little things more.
Currently, I am managing my diabetes very well! My HBA1C dropped from 9.1% to 6.0%, so I’m really proud of that. I have a huge team of professors, doctors, caregivers, and mental health services. They all work amazing together and try to give me the best & pain-free life possible. I wouldn’t know what I’d do without them. They saved my life several times and made things a lot better to handle. They’re my heroes!
Can you recognize the symptoms of a low/high blood sugar? Do you test often and can you tell a bit more about your experiences with low blood sugar?
Sometimes, I can recognize them. I have hypo unawareness, so I won’t feel a low until I almost pass out. I only feel the higher levers when I’m higher than 20 mmol/l (360 mg/dl).
Before I had the Dexcom G6 I used to test myself 16 to 20 times a day. Now just 2 times a day to make sure the Dexcom sensor is still accurate.
To cure my low blood sugar I use Dextro Energy sugar tables! Lots and lots of glucose tabs. Haha!
I passed out lots of times. I got a few times unconscious for more than 7 hours. It was really scary to experience it when waking up in a hospital and feeling the emotional and physical it left behind.
Food and diet
How does your diabetes affect your eating and do you find being on a diet restrictive?
I can’t eat due to my gastroparesis (stomach paralysis). I get my food intake via tube feeding.
Via the tube I drink about 3 to 5 litres water a day, otherwise I get dehydrated.
Before I got sick I got soooooo angry when people pulled food out of my hands while they said “Dude, you got diabetes. You shouldn’t eat Dextro Energy glucose tables!” while I had a freaking low level. I don’t know how I managed to let those people still live! Haha!
Do you believe that a plant based diet can improve diabetes? Did you ever experiment with this?
I have no idea.
“The best part is I got amazingly good at doing math!”
Exercise and work
Does your diabetes restrict you from exercise or your daily job?
I can’t exercise or work due to my physical health.
I care for my two rabbits, 24/7 since they’re free roam bunnies.
Do you have any positive or negative effects because of your diabetes?
The hardest part for me is The constant fear of dying early. I’m constantly worried.
The best part is I got amazingly good at doing math!
Diabetes causes lots and lots of other problems, like I described previously.
What is the best advice that you can give to non-diabetics, new diagnosed diabetics and diabetics?
It’s not because of a bad lifestyle. You don’t get it from eating too much sugar, and surely not from vaccinating!
If you have questions you can hit me up. At the start of the diagnose you get so much information already. I just leave it at them so they can study/ask at their own pace and needs.
It’s okay to not be okay. Don’t punish yourself or get angry at yourself for having a bad glucose level. It’s not your fault and your definitely not failing.
What would you ask the other diabetics?
What’s your favourite thing to do to forget your diabetes for a little while? (Like hobbies and going out)
Feel free to answer in the comments below.
Want to publish your own story?
Hey! I’m Ely Fornoville, the founder of Diabetic & Me .
We interview people with diabetes share the stories behind their lives. By sharing these stories, we want to help others to understand life with diabetes.
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