#DBW2019 - looping, or rather why I'm not doing it

The theme for Thursday in the #DBW2019 is DIY looping deholygrailed.

Now this is a technical subject, and I would be surprised if anyone reading most of the blog post on the subject, and who aren't living close to diabetes, would understand much of what is being said. Basically with today's technology, in first world countries with good health care systems, you can have access to an insulin pump and a continous glucose meter. Looping is when you combine these two so that the glucose meter senses changes in you glucose level, and the insulin pump reacts accordingly and either gives you more insulin, or stops the insulin for a while. This is called closed loop, when the technology don't need any human input and is probably the closest that you can get to a working pancreas. The thing is today on the market there are no closed loop systems. There are hybrid systems, where the user decides the dosage but the pump can stop or add the insulin if it's needed. DIY looping though is when you hack the hybrid loop system and makes it closed loop.

I'm not doing this, because I don't have a pump. And my costuming hobby is a big reason to why I don't have a pump.

This is an insulin pump. It sends the insulin through an infusion set that you have on you all the time. You need to have the infusion set, and you need to carry the pump with you as well.

Infusion set in my stomach under a pair of stays or a corset? No, I don't think so.

I don't see any space for a belt for the pump or a pocket in this costume either.

I'm sure that closed loop systems are the future of diabetes treatment, but until they are really here I prefer not having to worry about infusion sets or how I need to adjust my costumes to accomodate the pump. So with that I should say I'm not yet willing to work with a pump, but when (not if) I switch I am definitely going to loop but it won't be until there are working closed loop systems so that I don't have to work with DIY looping..

#DBW2019 - Diabetes and complications: present or repressed

The theme for Wednesday in the #DBW2019 is about complications. For most non-diabethics, and many diabethics, the main symptoms of diabetes is the emergency situations. When the bloodsugar drops so low or go so high that you need to quickly get it in check before going into a coma. Diabetes is an illness that takes a big toll on the body long term as well. If you have heard about diabethics going blind or having to amputate limbs, that's not something that happens over night. I would say a problem when discussing complications is that it's easy to paint a very dark picture, but it's maybe harder to talk about complications that have yet not become too severe.

I have had diabetes for more than 30 years, it's almost inevitable that you are going to have some complications at this stage. For me it's the eyes. I did not manage my diabetes well when I was a student. I thought I did, but in hindsight I definitely didn't. This is also probably where I would have liked it to be some better guidance for someone who got diabetes as a kid, into adulthood. I simply didn't know how diabetes worked, after all that information had gone to my parents not myself. When I first got the news that I had started to get changes in my eyes I got really scared. I remember to a friend that now I was going to be blind, and that I would loose my ability to see costumes and sew. See as a costumer that was my first thought, I just couldn't imagined a life without working with fabric, seeing wonderful creations and then trying to recreate them myself.

crazy detailed stuff like this needs good eyesight

Now the thing is, I didn't go blind. I have had a lot of laser treatments on my eyes, they were in a bad state, but my sight hasn't been affected. I have also not gotten any new changes due to better control of my bloodsugar.

But what about if I had gotten a bad eyesight, or neurological problems that wouldn't leave me not totally able-bodied. How does the costuming and cosplay community really treat people who are not  able-bodied? This is a discussion that has been on the outside of some other costumers' feeds that I follow and I think it's really important to look at one self in this. How welcome does a costumer really feel when they need to have different supports that you can't hide? Glasses, walking sticks or even wheel chairs are necessities for a lot of people in our society. In historical costuming circles it's also easy to sneer at someone sewing by machine, but one should remember that there are people out there who simply can't sew by hand due to their physical limitations.

I can take off my glasses if I want to, others can't

Drawing a line for what is accepted or not in the name of accuracy is a tricky question, and it is important that it is not just the able-bodied members of the costuming community that decide where that line is. As of now I count myself as able-bodied, but I'm guessing the fact that I am maybe a bit more aware than some people that things might change for me in the future makes me also more aware of this issue, and the importance of listening to the people who are the ones actually experiencing a lot more hurdles in their hobby than I do.

#DBW2019 - diabetes and costuming

I happened to stumble upon the fact that this week it is Diabetes Blog Week 2019, and I figured it could be interesting to take part in that. This is a costuming blog though so I am going to filter the topics through my experience as a costumer.

I'm not sure if everyone who reads this blog knows about it but I have had type 1 diabetes since I was four. Like many others there is no specific reason why I got it, no genetics or stuff like that, one day my immune system just decided to kill off my insulin production and nobody knows why. I'm dependant on daily insulin injections that I take with insulin pens, usually it's 5-7 injections a day. I also need to plan my food intake so that I know that my blood sugar won't drop dangerously low. Skipping lunch at a convention or event is not an option for me.

With that introduction here comes my first post of #dbw2019 (I missed Monday)

Tuesday - things I would have liked to know when I was diagnosed

Here is the tricky point. I don't remember what it is like to live without diabetes, I was simply too young when I got it. When I was diagnosed all the information was given to my parents, I simply learnt to live with all the new routines without really thinking about it.

What I would have liked to know more about though as I got into the costuming hobby is how to work with the stress of events. Stress makes it really hard to regulate your blood sugar, and with stress I also include the adrenaline rush of just being at an event with new people, new stuff happening and basically just having fun. Here is a secret though, most people don't notice this, simply because for me stress basically raises my blood sugar, and that doesn't give any dramatic symptoms (unless it goes really bad) just a general nausea, being thirsty and headaches.

The medieval diet is good for diabethics, these were my best days of the whole summer

One thing I definitely would have learnt more about though is to actually talk about diabetes itself. I have never had a problem saying that I have diabetes, or that I need to take my insulin, but it has taken me a really long time to be able to actually tell someone that I'm not feeling ok, that I'm either too low or too high and that I need to take care of it. This is especially true on big conventions or events where you meet a lot of people, but maybe not people that you know very well.