My Type 1 Diabetes Journey
This is an area of my life I don’t always talk about, mainly because it is not a defining feature of me, of ‘Naomi Clarke”, it just happens to be something I live with, it is not who I am.
I do mention my Type One Diabetes from time to time on my social media, and often mention that I wear an Insulin pump. But I have realised the number of people now following me who also live with type one or are parents of children with type 1 is growing substantially so I thought it was about time I used my platform of The Style Fairy; and had a stand alone ‘T1D’ section and try to blog out it more and share more of my Type One Diabetes story. This is my first post. And mainly it just a synopsis of my journey.
I was diagnosed with Type One Diabetes when I was 15 years old. I had been an otherwise totally healthy child and teenager. That summer I spent time in Madrid staying with a family and while there I lost a lot of weight in a very short space of time, and I also was incredibly thirsty – it is a thirst only someone with T1D can ever understand, it is unquenchable and….one of the main indicators of dangerously high blood sugars. I was diagnosed within a couple of weeks. On diagnosis I spent over a week in hospital as my blood sugars had reached a critical high and I was very sick as a result.
I vividly remember the day I was told I had type one diabetes, I was sitting there with my mum, they told us I would have to now inject myself several times a day, and that this would be forever The shock was immense. I remember adamantly saying to the nurses that there was NO WAY I was injecting myself, nope, no way, no how, I am not doing it.I was 15, I was terrified. And at that age you desperately don’t want to feel different to anyone else. But now I was…
I remember feeling scared and confused. I didn’t understand what T1D was, I didn’t know what it meant for me. When I look back now it must have been such a major shock for my mother too, if it happened to Annabelle I would be distraught. The truth is though, life goes on and life very much did go on. Day by day, injection by injection, we got there, I figured out how to live with type one diabetes.
I have spoken to countless mothers who are dealing with the diagnosis of their child and I can feel their worry and upset, they are worried it will limit their child, they are worried their child won’t be ‘normal’ that their child won’t do all the things other children do, but they will, trust me, they will, and more. Type One Diabetes should not and will not limit you from chasing your dreams, whether like me that was fashion or whatever it may be, it will not stand in your way.
What People Don’t Know
Type One Diabetes in very vey basic terms is an autoimmune condition whereby your pancreas no longer works – it no longer produces insulin. Insulin is a hormone needed to allow sugar (glucose) to enter cells to produce energy. We cannot live/ function without insulin so people with Type One Diabetes require insulin therapy (an insulin pump or multiple daily insulin injections).
- Type One Diabetes IS NOT THE SAME as Type Two Diabetes. They are totally different, separate conditions. As someone who lives with Type 1 IT is infuriating how often they are confused. I often wish T1D was called something else.
- You CAN NOT get Type One Diabetes from “eating too many sweets” (Don’t even get me started on the ignorance of comments like this)
- Type One Diabetes CAN NOT be reversed
- Type One Diabetes is an extremely serious condition, and CAN be life threatening if not correctly managed. So many can be dismissive of the condition, when in fact they just do not understand it.
- You DO NOT develop Type One Diabetes from being over weight (this can sometimes be factor for people who develop type 2 diabetes ) You’d be surprised how many say to me when I tell them about my condition “Oh but you’re not fat” !!
- Type One Diabetes is an extremely complex condition, it is not as simple as just giving yourself insulin and that’s that. Multiple factors are at play and it requires a huge mount of monitoring.
Learning to Inject
I have lived with Type One Diabetes now for over 19 years, I have lived longer with the condition that I did without it. For the first 15 and a half years I used insulin injections, on average I would need to inject 4 times per day, often 5 times. (When you calculate it, which I had never done before now that is 22,630 injections – wow!) Injecting yourself sounds worse than it actually is in reality and something you get so used to doing, it becomes second nature, soon you don’t even think about it, in fact I would often get detracted if i was talking to friends or my hubby and would forget if i had injected or not!!! I never did it in front of strangers really, only people I knew and trusted. I would inject in restaurants on occasion, it can take strangers of guard if they see you taking out a needle and injecting straight into your tummy or leg but it is completely normal part of our every day life so why not, I always just felt a wee bit self conscious. For women it can be tricky as depending on what you are wearing you may need the privacy to avoid flashing people. But whatever you are comfortable with!
Finger Pricks & Calculating Insulin
As well as injections, us type one diabetics, take multiple blood tests throughout the course of the day – we prick ourselves on the finger to get a small bit of blood to put into our blood glucose monitoring devices. This device then tells us what our blood sugar reading is (normal reading is 5 – 7). Before each meal it is common practice to check your blood sugar levels as you will require insulin for each meal or snack. We also check blood sugars readings post meal. Most people probably check their blood sugar readings anything from 5 – 8 times a day, in pregnancy I have to check often 12 or 15 times a day. Before some type one’s say it – yes there is now a device to avoid doing finger pricks, (Free Style Libre) I don’t have one, yet, so I won’t go into the detail there.
The Insulin Pump
I am wearing an insulin pump for the past 3 and a half years. This means I no longer have to give myself injections. The insulin pump is a device that is attached to me 24/7 via a canula and a wire into my stomach. Once programmed to the correct dosage for the patient it releases insulin in a steady stream throughout the course of the day, much like a real pancreas would. Before each meal, I now calculate my insulin dosage based on what I am about to eat (that’s the complex part I won’t go into) and then programme it into my pump and the insulin is released into my system. I have to change my pump ‘site’ every 2 or 3 days to avoid infection . If I ever get confident enough I would like to record a little video of just how I insert the wire into my tummy and attach myself to the pump – think it could be beneficial to kids or newly diagnosed type one diabetics.You live attached to the pump 24 hours a day, you can remove it fro short periods of time, like to shower or to get into a swimming pool.
Living with a Pump
All my teenage years I was terrified about getting a pump; all my fears and worries were mainly superficial ones – I hated the idea that my now ‘invisible’ illness would somehow now be ‘visible’ and I would now be attached to this ugly device, forever. There is something very personal and discreet about insulin injections, you carry them in your bag, no one needs to know (unless you want them too) about your condition. As a teenager and in my early 20’s, I refused to even entertain the idea of the pump, but after getting married, and when the idea of getting pregnant came into a play I know things would change. I always said to my husband, I will get a pump to get pregnant if I need to, turns out when I started pre pregnancy clinic, a pump looked to be the best way forward for me. I got my insulin pump, 4 years ago this summer and shortly after I got it, (maybe approx 6 mon th later) I got pregnant with my angel Annabelle Ivy. I would now never ever go back to injections.
One of the biggest questions I get asked about my pump is… “Where do you hide it”.
I did a talk a few months ago for teenagers of Temple Street Hospital who live with Type One Diabetes and it was a hot topic with all the teenage girls – how do i hide it in all my outfits?
So with that in mind I plan to do a full blog post ALL about my pump, what it looks like, and where I wear it.
Don’t ever think for one second, that any of this comes easy to me or that I don’t mind it, that it is easy for me to wear a pump – It’s not. Off course I mind, off course I struggle, I am human, at times I HATE my pump, I HATE that I have diabetes, some days are really really really hard and really frustrating. I cry, I get frustrated, I get angry, it feels unfair – ALL the things you feel and it can often feel like no one understands. But look, the truth is, we all have our own cross to bear in this life, some have it much harder but no one has it all, trust me.
The next blog posts I have planned are;
- Wearing an insulin pump and how I hide it
- Pregnancy and Type One Diabetes
If there is anything else you want me to cover or talk about, just leave a comment below or you can private mail me on email@example.com
‘Til next time
Sí delighted to hear you are doing this….. I struggle with weight around my tummy and I feel my injection site is highlighted more by this….. If you have any diet tips that would be a huge help…. I really struggle with food…. Cárb counting sends me into a spin!!
Great read! Looking forward to your next blog on wearing an insulin pump and how you hide it. I too have Type 1 Diabetes and wear a pump. I must say that I find it restricts me when choosing clothes – it can be really frustrating.
Great post Naomi, really looking forward to your tips on hiding the pump.
Fantastic article….I was diagnosed 3 years ago while I was pregnant… it was the most stressful time of my life trying to deal with being diabetic and worrying about the baby (she was fine). Injecting drives me mad sometimes so a pump is something I’ve been thinking of so I’m looking forward to your next blog post xx
Loved reading this! You wrote some really comments to me when my 5yr old son was diagnosed a few months ago and I will never forget…. and you are so right- it will not stop him from achieving anything ever. Thank you
I’ve had type one for 16 years. I’m still on injections but am considering a pump so would love to hear more about how you hide it!
Brilliant article. So well explained. So much more freedom with the pump but a lot more work for us parents. It’s worth it though. Looking forward to the next one. X
Thanks for sharing x this was a really interesting read! When you said that about Temple Street – I imagine you’re going to be helping a lot of people with these posts x
this. So relatable. Newly diagnosed& reading this with blurred vision (temporary side effect)
Would love to read more especially the “complicated carb counting” or what your diet is like for you.
Thanks for sharing & raising awareness. It’s a huge help on many levels
Thank you for sharing this, you will inspire so many Showing that great things can be achieved no matter what & nothing is off limits. Educating people on this condition is so important as people have little or no knowledge about it. Our little boy is 4 & on the pump 2 years – the freedom it gives was life changing. Looking forward to your next post x
It’s great you’re sharing this Naomi. It’s a really well explained and well written article.
I’m exactly like you, the same age, diagnosed at 15 and with two babies nearly the same age.
You’re doing a fantastic job. Keep it up. Lx
It’s lovely to hear someone talking about diabetes in such a real way. I found out less than 2 months ago that I have Type1. I’ve just turned 31 and got married at Christmas and it was the last thing I expected them to tell me. No history in my family so of course many have assumed it’s type2. I’m trying to go one day at a time at the minute and not get overwhelmed with all there is to learn but it’s hard some days! X
That was a great read.
I was diagnosed in July pass, I like you was losing a lot of weight and constantly thirsty.
I am now injection myself 4 times daily and now gaining weight very quickly. Is there a diet regime you follow etc, any tips is greatly appreciated. Thanks Leanne