I’ve come a long way in just over a year; taking control of diabetes, getting my sugars to the normal range and finally getting an insulin pump. But there was a struggle for years before this happened.
For many years I didn’t have any control. When i injected I guessed, when I tested (which was rare) I didn’t know what to do with the results apart from feel guilty that I should writing them down somewhere. When I attended hospital appointments and GP appointments I didn’t pay attention to what was being said, they looked at my HbA1c and yeah, it’s OK. They tried to talk about losing weight (another thing that I didn’t want to talk about) and I just shut down completely. I worked shifts and they could go on until 1am because it was the pub and club scene. I drank and didn’t think to check my BG, I ate and guessed a random amount of insulin to inject and I definitely tested less than twice a day; sometimes I didn’t test at all. This resulted in many trips to A&E at the Heath Hospital with DKA.
It was just me. That’s how I felt. I felt alone. My parents didn’t really understand it. My friends didn’t understand it. I only knew one person with T1D in school and it was just someone I knew of, not someone to talk to. Although there were GP appointments and clinic visits, I never felt like I could talk to them about my T1D.
I didn’t tell people I have T1D. I didn’t want people to know. I didn’t know how people would deal with it. After all, I certainly couldn’t.
This had gone on for years. I was diagnosed at 12 and I probably took care of it for 6 months before the thoughts of “why have I got this?” “No-one else has to do this” and “Why me?”. From then on I made up my BG readings to take to clinic appointments and I lied to my parents about what I ate, what my sugars were, and how I felt. I cried myself to sleep so many nights because I didn’t know how else to cope with it. The guilt that over took me when I eventually did test my BG and it was 21.7, was unbearable. The strain and stress that resulted in me self harming because I didn’t have anyone to talk to about this monster that I lived with. I tried to bury it but it came back, relentlessly.
I was moved from 4 injections a day, to 2. This offered less control and less flexibility but it cut down the number of jabs I should’ve done a day. I still didn’t do them though. I’m not scared of needles but I just didn’t want to face facts that this was show I had to live. I moved back to 4 injections a day because with my job it would be easier. A DSN when I was at a clinic appointment suggested it. I just agreed I didn’t know what it meant. And I still didn’t do them. It got a bit better when I hit 21, I did my injections a bit more, but still didn’t test. There were still days when I didn’t inject though.
But all of this changed in September 2014.
I went back to college when I was 22, I wanted to get into uni and discover why I had T1D. I think this was my biggest drive, not to take care of myself, but why I had this. It was here that I met Mel. Mel also has T1D (since she was 13), and is a super star athlete who runs for Wales; and of course she is in control of her T1D. It was here, with her support that I finally came to accept that I was diabetic.
Soon every conversation between Mel and I was about T1D. I learnt how she lowered her basal rate when she’s training, how she monitors ketones when she’s ill and has high sugar levels. How one crappy BG shouldn’t destroy your whole mindset, but you correct and move on. Seeing her 4 days a week in college (and all the revision sessions in between!) helped me to understand that there was something so much better out there than what I was dealing with. The was a better side to T1D and all I had to do was understand it more. Soon I attended a clinic appointment with a new attitude and asked questions about pumps, DAPNE and how I could control my T1D more. I stayed in regular contact with DSNs, which I had never done before. I found out that I was attending DAPNE in August and just felt that one small step closer to control. I found out in June 2015 then that I had appointment with the pump assessment clinic. I couldn’t wait. All of this happened because I met one person with T1D.
Peer-support is crucial to living with T1D. I follow so many people on twitter who have diabetes. I’m part of groups on Facebook that are made up of people with diabetes, type one and all other types. To not feel alone with this diabetes monster is a massive release. I was diagnosed with depression in my early 20 and think I great deal came from trying to deal with living with a life altering condition. A life-long condition also. You can’t run from T1D. You live with it, you fight with it and mostly you thank your lucky stars that you know you have support from other people out there that can help you.
I keep thinking though, what if I had all this support when I was younger? Would the same thing of happened? Or would I still have gone down the dark road of “Diabetes Burn-Out”? I know one thing: Mel is the only reason that I am here today. Without her and everyone else from Twitter and Facebook, I wouldn’t have the support that I do now. To know that if I’m frustrated about that fact that my BG won’t go down, there at the end of a text or phone call there’s Mel and many other people.
So now, I’m taking care of myself. I’m in uni studying genetics. I’m pumping and learning how to change my insulin levels myself. I’m fundraising for JDRF by running 5K and holding tea parties. I’m trying to raise awareness of T1D. And most importantly, I’m enjoying life and understanding that one BG reading of 21.7 is not the end of the world. The big drive in my life to find out why I have T1D is still there, but it goes hand in hand with controlling my T1D and making sure I live my life to the full.
Mel isn’t the only person that I have to thank. My partner has been all the way with me. When we met I didn’t have control, but she didn’t understand that that was bad. When I was learning about how to control my T1D, Kath was there learning with me. She has dealt with her fair share of hypos in the night, my sugars staying at 16 for no reason and ketones rising. She is another big drive to my diabetes success, as I want to live a long and happy life with her.
I’ve finally accepted that I have Type 1 Diabetes. And I’m really happy that I do, otherwise I wouldn’t have become this person I am today.
After all, Everyone needs a Diabestie.
P.S – Mel also has a blog! Have a cheeky read, she posts some great stuff! http://www.melaniestephenson.co.uk/
T1D – Type 1 Diabetes, an autoimmune condition which results in no insulin being produced and therefore high blood glucose levels.
BG – Blood glucose
Ketone – and acidic molecule that builds up in the blood stream when your BG is high. (Plural: ketones)
HbA1c – a test that gives you the average BG reading for 3 months. Also known as Glycated Haemoglobin
GP – General Practitioner found at your doctor’s surgery.
Heath Hospital – University Hospital of Wales, in Cardiff.
A&E – Accident and Emergency unit in the hospital.
JDRF – Juvenile Diabetes Research Foundation. A charity specifically for T1D.
Clinic visits – Diabetes Clinic Appointments held in hospital.
DAPNE – Dose Adjustment For Normal Eating, a carb counting course.