On Friday I went to the hospital to talk to a diabetic nurse about the possibility of getting a blood sugar scanner. Instead, everything that has been true for the past 4 years got blown out the window.
It turns out that I’m not a type 1 diabetic after all…
The first thing the nurse asked me was had I been given the results of the genetic testing that they had sent off. This felt really out of the blue. Those tests were from 3 years ago. I had forgotten about them, they didn’t seem relevant, doctors had stopped asking about my diagnoses, the fact it was so weird no longer mattered, I was type 1, wasn’t I?
I asked if they needed to give me the results, the nurse looked at me and told me she was going to get the consultant.
I remembered the consultant, she was the one who had sent off for the tests, they had wanted to know if I might have a rare genetic form of diabetes, something that can’t be diagnosed without careful testing. At the time I remember thinking it was unlikely it was something that you normally inherit neither my parents or grandparents had diabetes, the only person in my family with it is my cousin and she was diagnosed at three, typical type 1.
But despite the fact, I hadn’t thought about them for years and didn’t believe they would change anything there were here and changing EVERYTHING!
I don’t have type 1 I have something called monogenic diabetes, it’s rare only about 1% of diabetics have it, more most likely but not everyone is tested. And my mutation is even rarer, according to the consultant, they don’t know much about it, only a handful of cases have been reported. So basically, I’m a mutant.
This doesn’t seem so strange, this bit was easy to accept. I have several things that make me a bit odd, I’m autistic, dyslexic, asexual, medically ever since my original diagnoses I have been seen as a bit medically odd and all my family are average height and well I’m not. Having slightly confused genes, that makes sense.
What’s more, I’m to come off my insulin.
I should be able to produce my own, the problem I have is that my pancreas hasn’t been able to release it, the hope is that with one daily tablet I will be able to produce my own and will be able to have a much more normal life. Sounds good.
They gave me the tablets on Friday but told me to not start taking them until Tuesday as it’s bank holiday weekend and they want it to be easy for me to contact the hospital if anything goes wrong or I have questions.
I left the hospital with my mind buzzing, this didn’t feel real. It was like my world had spun on its axis. No more insulin, a rare genetic mutation and everything I had believed about my pancreas for the past 4 years wrong.
On Friday I was shocked but excited, this should be a good thing. I cried and I smiled and I felt bloody confused and I told my parents and my friends.
On Saturday I went to work and told people there before distracting myself with the highly grounding, highly comforting, highly familiar world of backpacks.
For someone like me who obsesses over everything news this big is hard to take, working and therefore being distracted is a godsend.
By Saturday evening my buoyant mood was fading and nerves were taking its place. What happened if the new meds made my blood sugars too low and I am home alone? What if I need to eat way more carb than normal and it makes me sick? What if I can’t get the same level of control as I had been used to with insulin? What if I don’t like the new way of doing things?
Anxiety built in my stomach until I felt sick. All my fears compounding each other until I knew I need to talk to someone about it. I went downstairs and as casually as I could asked my mum if she had to go to work on Tuesday. The lightness I had been hoping for soon faded and I explained, in tears, that I was scared to be alone on the first day of the new meds. Rationally I know most likely all will be fine but for an autistic mind, the lack of certainty of moving from something that is familiar and safe to something totally new and untried is one of the scariest things in the world. I’m terrified.
Talking to my parents we decide that the best thing to do is start on Monday instead, yes I won’t be able to phone the diabetes unit at the hospital but my parents will be about and I won’t be alone if anything goes wrong. I push the anxiety back down to the pit of my stomach and do my best to ignore it for the rest of the evening.
I get all the way to going to bed but as soon as I’m in a dark room with nothing but my thought all the fears come flooding back and I can’t push them away. I put my music on to see if that will help but in the end I phone Naomi, one of my best and oldest friends. Gone are the days I’m happy to cry myself to sleep instead of picking up a phone. I must have grown up at some point.
Today I manage to distract myself with a good kayaking session and writing a whole blog post when anxiety threats to overwhelm me once again.
Tomorrow is a new day. And tonight, for the first time in 4 years I deliberately didn’t take my evening insulin.
Here comes a brave new world!
I will update you all shortly,
If you want to learn more about my original diagnoses follow this link: https://girlwithbraid.com/2017/04/14/canada-and-back-again/
The girl with the braid in her hair xxx