One of the most special people in my life right now is Rosie Red – she of the corsetry and couture brand. Rosie is one of the strongest people I know because every hour of every day she fights with an awful disease. And as I have gotten to know her I have gotten to know more about diabetes, the misconceptions, the agony, the worry, the way you cannot switch off – ever. And so with so much talk about it in the news right now I thought I would ask Rosie to share some insight into the disease.
I’m not diabetic because I’m fat. That is as simply as I can put it. And, I really wanted a ‘grabby’ headline for you. I love corsets, wearing and making them under my brand Rosie Red Corsetry & Couture. I also have a chronic disease which kills more than breast cancer, means the chances of still birth, blindness and amputation (just as a little taster of the big selection for you) are crazy high; and I wear the snazzy accessories of a tube in my stomach, and an implant in my arm. I am one of the 10%: I have type 1 diabetes.
If Simon has 12 Mars Bars and eats all of them in one hour, what does Simon now have? No, Simon doesn’t have diabetes, Simon is greedy. And whoever came up with jokes like this are damaging to so many children, teenagers and adults everywhere.
The difference between type 1 and type 2 diabetes is so vast that lots of people have petitioned for a name change. I really wanted to be able to use this article to correct some common myths for you, and to give you an understanding of what it is like for me to live with this illness.
Fat people get diabetes right? You eat too much cake you get diabetes?
Let’s get this straight first. There are TWO types of diabetes. The more Western illness which has recently hit headlines more than usual, for sweeping through the UK and USA like a ‘modern plague’, and accounts for 90% of diabetics is type 2 diabetes. This is an illness associated with lifestyle. This includes obesity, inactivity, smoking and alcohol/drug abuse. It is possible (in very rare cases) to develop type 2 diabetes after certain operations and in old age.
Type 1 diabetes is an autoimmune disease. It belongs to the same family as CF, Crones and some thyroid diseases. It is when the body literally decides to randomly destroy another part. For no frickin’ reason. Possible Reasons that researchers have whittled it down to are either a virus, or significant trauma working as a catalyst. It tends to crop up during childhood (I was aged 11) which is where it gets its nickname ‘juvenile diabetes’ from. Some symptoms include: extreme thirst, extreme tiredness, needing to pee a lot, weight loss, smelly breath, and depression.
But insulin cures it right?
Wrong. Insulin is a therapy which ALL type one diabetics have to take to survive. Without it we would quite simply slip into a coma and that’s the end of that. Being a type 1 diabetic means that we produce no insulin whatsoever, and therefore we are reliant on giving ourselves doses of the hormone. There are 2 ways this can be done, either by multiple daily injections, or by insulin pump. I wear an insulin pump in my bra which looks a lot like an old school iPod attached to a tube which is then on a cannula in my stomach. This is something I have to change myself every 2-3 days. I’m pretty badass. And don’t talk to a t1 diabetic about pain management, they got this!
If you have that many needles in your life, surely you’re used to them?
Needles hurt anyone. It is a really grim part of the illness, and it is just something we have to get on with. My stomach is often black and bruised, lumpy and without much elastic left in the skin. Can you imagine having over 22,000 injections in your belly? That’s not going to look pretty.
Stop! You can’t eat that!
Hold up right there, we can eat anything. Gimme a full family sized lemon meringue pie and I will show you exactly what I mean. (Disclosure I have never actually eaten a full lemon meringue pie solo, but maybe it’s worth a shot). The one exception is that we can’t drink full sugar drinks such as Coke or Lucazade. This is because the glucose in the drinks gets into our blood stream faster than the insulin we administer can. When you eat a sugary food, at least there is some digestion that needs to take place first. And as for diabetic chocolates, just don’t touch them. They normally contain sweeteners with laxative effects. I may or may not know this from experience of eating a full bag of Thornton’s diabetic toffee…
However when our blood goes hypoglycaemic, these sugary drinks literally save our life!
You should be grateful though, there are far worse illnesses!
The thing I battle with every single day is the way in which there is no hope. There is no getting better. No matter what I drink, eat, how much I exercise, and how I sleep, this disease is never going away. Like I said before, every single area of my life is affected. Some days I am so unwell I can’t get out of bed, and others I am on top of the world. We also have to come to terms with the fact that type 1 diabetes significantly complicates every aspect of our body and health. Studies have just said that it is the most demanding of all the chronic illnesses, both psychologically and physically. It is a 24 hour 7 day a week, every day of the year kind of job!
Just for fun, I want to talk you through a first date scenario. Now, if you are anything like me, I dread first dates! Eugh! What will they think of me? What shall I wear/how will I look? I want to try and help you imagine what a first date scenario can be like when you have type 1 diabetes. This is simply one scenario that takes place in my life as a mid twenties single lady. The thought processes and actions I take are similar in all kinds of situations whether its on photo shoots, design meetings or giving lectures…
8am: Wake up, blood test. Eugh, blood sugar is going low so I best drink some lucazade and have breakfast sharpish. But not too much breakfast, if it’s too high I wont be able to drive (by law your sugar has certain perimeters it has to be between to prove you are safe to drive)
9am: Blood sugar creeping up, but I have my eye on it. I am aware my date and I haven’t spoken about my illness. I wonder if I’m going to be able to hide it. I’ve scared people off by letting them know too soon before. And, I don’t want all the questions.
9.30am: Another blood test and crap it is too high. I go to check my cannula and CRAP I have a bleed from my tubing. This means no insulin is going into my body. Receive a text saying ‘still on for the wildlife park at 11am?’ Reply saying ‘yes of course, *smile face*!’ PANIC.
9.45am: New cannula is now inserted, feeling sore and have had to change clothes because I’ve bled on my cream dress. Give myself a syringe full of insulin so that I know I am going to be safe to drive. Hope I’ve guesstimated right. Date nerves start to kick in, eugh, what if I’m ill when I’m with him, he will have no idea and I will look totally weird.
10.15am: Blood test again, thank the gods its coming back down. Feel knackered and am now looking frazzled, but if I don’t leave now I will be late.
11am: Arrive early so I can blood test in private and check my insulin pump. Put a temporary setting on my insulin pump because we will be walking all day which means my sugars will probably drop. Check I have everything in my bag (I can guarantee my bag is always more full than yours). I can confirm I have my blood tester, spare strips, spare cannula, disposable syringes, vial of insulin, lucazade, bag of haribo, cereal bar, antiseptic hand gel, tissues, oh and lipstick.
11.10am: He arrives! It’s all going pretty well so far, fingers crossed!
11.30am: Damnit, my boob just vibrated! I keep my insulin pump in my bra and the temporary setting has just reminded me that it’s turned on. Not sure whether to say anything or to ignore it. He definitely heard my boob vibrate though. Oh god, maybe he thinks I’m kinky.
12.30pm: Loo break, I feel a bit dehydrated, probably my sugars are up. Excuse myself for a toilet break to test them in private. I’ve been ages, he legit must think I have gone for a poo.
1.30pm: Yeah, he seems a really good guy, I like him. So far I have kept things quiet successfully.
2pm: I’m aware we haven’t had lunch yet, and maybe we aren’t going to have lunch? Should probably check the sugars to see how they’re managing. I have another long loo break. Maybe he thinks I’m having loads of anxiety poos.
3pm: Yep, no lunch and I am starting to feel a bit jittery. I can’t work out if its nerves because he just stood really close to me and said I looked cute. Cute like a red panda. Or if it’s the blood sugar. Better test again.
3.30pm: Find a toilet to blood test in and find it is borderline low! Eugh! What a messed up day health, could you not have given me one day off?! I get the bottle of lucazde out of my bag and down it. Downing drinks is one of the many skills diabetes has taught me. He must think this is a really big poo. I’ve been gone ages.
4pm: The park closes and I presume that’s the end of the date. I can’t wait to just get into bed and hide. How have you let me down so much in one day body?! I feel drained. I can’t have come across well. BUT WAIT, he is saying we should stay out longer and suggests the cinema.
4.15pm: Blood test again to check I’m okay to drive
5.30pm: Head to the cinema and we get popcorn. Eugh, how can I count the carbs in popcorn, especially when we are sharing? Maybe I just won’t eat any, but I’m hungry and I don’t want to look like one of those girls that don’t eat. In the darkness it looks like I am fondling my boob as I try and subtly reach my insulin pump. He goes to hold my hand, must be because he thinks I’m up for a good grope seeing as I’m already at it.
8.30pm: The movie finishes and we go to the car park. More driving means more blood testing. He is parked next to me and I need to make sure that he leaves first so that I can again blood test in private. He kisses me! Was not expecting that.
9pm: I get home and am starving. I eat all the things. But remember to count all the carbohydrates so I can calculate my dose properly (10g=1unit. I have had 68g= 6.8 units). Get a text through saying he would like to cook me dinner! Score!
10.30pm: Get my drained sorry butt into bed and start to think about date number 2.
3am: Blood sugar is hypo, I’m sweating and shaking so call mum for help.
6am: Blood test to check that the hypo wasn’t over treated and my sugar isn’t now crazy high. I’m safe so go back to bed.
8am: Wake up, I have a meeting with a group of design professionals and have to do this all over again…
Type 1 diabetes is the biggest burden I have to carry in my life. There are times I think that it has given me so much gumption to strive for everything I want in life, and for that I am thankful. I am determined and ambitious, because despite everything I want to prove to myself that I can do this. But, if you gave me the choice, a life without type 1 diabetes would be oh so much simpler.
The next time you hear someone making a sweeping statement about ‘diabetes’ just please remember that 10% of us are battling an autoimmune disease in a way that feels similar to trying to control a tornado. And please ask questions! The only way we ever learn is to ask.