Diabetes-SCA-art - 12/28/09
"Surviving Diabetes in the SCA" by Forester Padraig MacRaighne and THL Geniveve Rose D'Glendalough (called GenRose).
This article was submitted to me by the author for inclusion in this set of files, called Stefan's Florilegium.
These files are available on the Internet at: http://www.florilegium.org
Copyright to the contents of this file remains with the author or translator.
While the author will likely give permission for this work to be reprinted in SCA type publications, please check with the author first or check for any permissions granted at the end of this file.
Mark S. Harris...AKA:..Stefan li Rous
stefan at florilegium.org
This article was first published in "The Gauntlet", the newsletter of the Pentamere Region, Middle Kingdom.
2nd Place winner, "Best article", Blackfox Awards AS-43. (2009)
Surviving Diabetes in the SCA
by Forester Padraig MacRaighne and
THL Geniveve Rose D'Glendalough (called GenRose)
For the record
Neither Padraig nor GenRose are medical professionals. This is not advice on treatment, but is intended as advice to help others maintain an active lifestyle while controlling diabetes under the care of a professional. The advice given here is intended to be very general and applicable for people who are either "Type I" or "Type II" diabetics. Even those who are hypoglycemic could probably benefit from this information. Some things will be more effective than others. When in doubt, always consult with your health care professional.
It's A Juggling Act!
Controlling Diabetes is a juggling act! Repeat that three times so you will remember it. Everyone who is either diabetic, lives with a diabetic, or is involved in treating a diabetic, needs to remember that all the time. There are three main things that can affect blood sugar levels: diet, exercise, and medication. There are other factors, such as mood and illness, which can also affect blood sugar, however, we won't be discussing those.
The first, and biggest, thing to know what your blood sugar level should be and what it actually is. Your target (what your level should be) is something your doctor will set for you. Generally speaking, most people should be trying to maintain a level between 80 and 110 before meals. The only way to be sure that you are okay is to test your sugar, so keep your test kit with you at all times. Most meters are small enough that they can be carried easily in an SCA belt pouch of not too large a size, along with other necessities like I.D. and money.
Diet and exercise are two of the easiest things to control at an event. They are also one of the things most likely to affect your sugar levels throughout the day. Generally, you are probably more active at an event than at home. That may mean that you can indulge in a couple more snack items than normal, but do be careful. Also, one of the easiest things to do at an event is to lose track of time. Say you were fencing at a demo or event, and at the end of a pass you realize you're unable to keep the tip of your blade still. You check the time and it's two hours past your normal lunchtime. OOPS!!! A quick snack and some juice and you're fine until you can get a full meal. A lesson not soon forgotten by you or those around you.
Hydration is the Key
Another issue to consider for anyone, but especially for diabetics, is hydration. Usually, diabetics can be spotted because they are the people constantly drinking something. Not easy to do on any of the various list fields, especially during a camping event. The diabetic is an exception to the "Gatorade (tm) rule." Sports drinks have lots of sugars in various forms along with the electrolytes. Their big advantage for athletes and people who have been perspiring is replacing not just fluids, but minerals, things the body needs to function properly. For a diabetic, those may be just the things they need to avoid, especially the sugars, which are there to help carry the electrolytes and minerals into the system more quickly. The best thing for a diabetic is just plain water, maybe lightly mixed with something like a sugar-free flavoring or lemon juice to make it more palatable if needed.
When you need it, medication is a wonderful thing. Make sure you have it when you need it. But you also need to know that you need it. This means that you need to know how your body responds to high and low sugar levels. Having your friends know what to watch for can be useful too. In general, some signs you should watch for are dizziness, cold sweats, clamminess, trembling hands or feet, change of normal color (some folks get pale and others can get flushed), slurred speech or changes in speech patterns, and general changes in attitude or behavior. Some people have very personal signs and symptoms and should advise their friends of these special things to watch for.
It is your responsibility to accept their warnings gracefully and gratefully! Again, GRACEFULLY and GRATEFULLY! Someone warning you of a potential problem is doing you a huge favor and deserves thanks and consideration. It is also incumbent on you to be as polite as the situation allows when asking for help. All that is usually needed is a quick statement such as, "I am a diabetic and I need something to eat quickly." As a group, people who are SCA members are among the most helpful people in the world. Rarely will you see a person in true need turned away by another at an event. And seldom will you leave a day camp at an event hungry unless it was by your own choice.
Getting help when you need it
A personal friend may be able to act as a private citizen, someone who is a medical professional may be able to "step out of persona", or the paramedics may arrive on the scene and perform emergency services. But ultimately, the responsibility for controlling your diabetes is yours.
Remember that there are limits to what the Chirurgeons can do at any SCA event, be it a local demo or a War. SCA Chirurgeons are not allowed to administer insulin or anything else that has anything to do with needles. This includes finger pokes to check blood sugar levels. Family and friends who have your permission to use your equipment are not bound by these restrictions. It is a good idea to have some kind of note pad with your gear so that a person helping you can document what they have done. Paramedics may not listen to a "voice in the background", but will probably pay attention to an organized note of symptoms, statistics, and treatments given.
Important Things To Have
When attending an event it is important to have all your information written down and accessible to whomever is with you for the day at the event. Someone calling your doctor and saying "Yes, I have Lord HackenSlash here in diabetic distress" is not going to get you very far.
A good Starting list is:
¤ Mundane name
¤ Home and cell numbers
¤ Name and emergency contact number (home and cell)
¤ Doctor's name and number
¤ List of medications you are taking along with dosages and normal dosage times.
¤ Normal blood sugar range.
¤ List any known allergies
Keeping the Emergency Information with your kit is a good idea, having it in more than one place is even better.
It's important that you let those you are with know the location of your medications and insulin equipment (i.e. if you are not on an insulin pump, your syringe and insulin bottles) and how to use them, especially an insulin pump, in case you are unable to do so yourself. Hopefully they will never have to go farther then the finger poke and monitor, but it is always a good idea that they know anyway just in case.
Another thing to consider is what to do with your trash. Diabetes testing supplies are a very small but potentially very important source of biohazard material. Many local hospitals have programs for diabetics to dispose of used syringes and have gotten together with the local waste disposal companies to determine whether test strips and lancets (finger poke needles) are a serious threat. Some hospitals can issue a "Sharps Clipper" to cut the needles off your syringes. The rest of the syringe is not considered a biohazard in many towns. Carrying an old empty case from your test strips for the used lancets and strips is a simple and tiny addition to your supplies for an event. Re-capping your used syringes until you get home is a good way to handle them. Use a black marker or something to indicate a used syringe. Some come in wrappers to preserve sterility, so anything that is unwrapped is used and therefore needs disposal. This may seem trivial, but nearly every time you see a television program where someone is using injected illegal drugs, the syringe in the paraphernalia is usually a used insulin syringe. If you check with the Chirurgeons, they should know the local rules and be able to help you make sure you are complying. Someplace like Pennsic, where it is a long-term encampment, may have provision for disposal through Chirurgeon's Point.
Helping a Diabetic in Distress
If you find yourself in distress, it's a good idea to have something to help you, or the friend with you, get your blood sugars back to normal. You should have something with you at all times. Some ideas that were given to us are:
¤ Small tube of frosting (the little cake decorating tubes you can get at any store)
¤ Small packets of Lemon Juice (these are also useful to make local water that "tastes funny" more palatable)
¤ Small packets of honey (this will give a relatively slow rise to your blood sugar and can provide an easily controlled sugar dose)
¤ Hard Candy (butterscotches, peppermints, Starbursts, Skittles etc.) (remember that while these work very fast, they also taste good and you may be tempted to eat too many.)
¤ Fruit and nuts are great things to have on hand. Any kind of nuts gives you protein in a very portable form! Trail mixes, store bought or homemade, are good examples.
¤ Specifically made glucose tablets. These have the advantage of not tasting so good and are less likely to get eaten in great quantities.
Sitting Feast as a Diabetic
In our discussion groups, sitting feast has always been one of our main topics and concerns. The major complaints: the feast steward won't listen to my health concerns, and the menu has too many courses that I can't eat because of too much honey/sugar/starch, etc. What we hear most is, "I don't sit feast at events at all". That's a real pity, as feast is a big part of the fun to be had at an event.
The best thing you can do is contact the feast steward early. Do not expect to make contact on the day of the feast and hope for much sympathy. Feast stewards often starts cooking a month or more before the feast. The earlier you contact them, the likelier an accommodation can be reached. Feast stewards work very hard on their presentation and trying to make things look as period as possible. Sauces, noodles, vegetables, and spices often need to be mixed in and on the platter to be served appropriately. Arrangements to deal with a dietary challenge usually can be made on an individual basis and single servings provided. It is a really good, and wise, idea to make arrangements to pick up any special dishes yourself, rather than depending on the servers. This little courtesy also helps remind the cook of your special need without being a pain during serving.
You might also try arranging an "off-board" potluck feast with others who have special dietary needs. Be sure to check with the feast steward first though to ensure they have room to set a table aside for you. Also remember that you more than likely won't have access to the kitchen. So heating food could be an issue.
Making something non period look period
While one of the goals in the SCA is to try for as period a look as possible, medical necessities (i.e. – glasses, insulin pumps, needles, etc.) are an exception. However this doesn't mean that we still can't try. One of the problems you'll have is keeping your insulin cool and safe. If it is an indoor event, try contacting the feast steward (preferably ahead of time) and ask permission to store insulin in the fridge in the kitchen. Barring that, usually, a small lunchbox sized cooler with cold packs works, but that usually only lasts a few hours. If you can afford one and have access to an electric supply near your day camp, a powered cooler or beverage fridge (one of the novelty mini fridges) also works well. Covering either with a small throw or blanket helps keep them out of sight.
It becomes a little harder to disguise an insulin pump. One idea (that also works well for mundane dresses for prom or homecoming season) is a hidden pocket. Open a side seam in the dress and sew in a pocket, in the shape of a dog ear (i.e. – a long floppy ear) making sure to keep a hole or button hole in the seam of the pocket itself for threading the insulin feed line through. Another idea for those that are on the insulin pump is to use a pouch that the pump would fit into with the same idea of threading the feed line through a buttonhole in the tunic or other garb you happen to be wearing. This way your pump is accessible to you in the pouch and you can wear it on your belt instead of making a hidden pocket. If the pouch is big enough, you can also store your other diabetic equipment in it as well. Always include any contact information and medical needs in the pouch in case of a diabetic distress event. As noted before, the more places information is available in case of need, the better. And it's not unusual to have more than one pouch on your belt. Modern pants have more than one pocket, don't they?
These are just a few of the links available for Diabetes information.
These are both owned by companies providing testing equipment.
¤ The American Diabetes Association - www.diabetes.org
¤ The Center for Disease Control's Diabetes Site - www.cdc.gov/diabetes
¤ The Juvenile Diabetes Research Foundation - www.JDRF.org
Check with your local Health Department. They will probably know where you can go for help and support. Some local hospitals also sponsor support groups and host regular meetings.
About the Authors
Forester Padraig MacRaighne
(mka Frederick Fenters)
padraig at cablespeed.com
The way this whole thing got started was a friend asking me how to cope with her newly diagnosed pre-diabetic condition while she participated in the SCA. I had never tried to hide being diabetic after my own diagnosis, and in fact, had asked friends to help me watch for signs that I was in need of food or other treatment.
I had gone through the (apparently) usual stages in accepting my diabetes: denial, grudging admission, and finally real acceptance. This then allowed me to look for ways to keep doing the things I love and keep my diabetes under reasonable control.
The original diagnosis came about when I went to an urgent care clinic one evening for low back pain. I did not have a regular physician at the time and really just wanted something to help relax my back and let me sleep. After taking several samples, including a urine specimen, the doctor surprised the daylights out of me by asking who was treating my diabetes. My answer was, of course, "What are you talking about?"
It has been about 10 years now since that first diagnosis. To quote the Grateful Dead, "What a long strange trip it's been!" At least, that's my story and I'm sticking to it!
THL Geniveve Rose D'Glendalough (called GenRose)
(mka Patresha Roehre)
ladygenrose at yahoo.com
Though I am not a diabetic myself, I have about 16 years first hand experience with diabetes through my oldest daughter. She became a diabetic at the age of 4. That was the summer from Hell.
We noticed that she was losing her "baby fat" very quickly, was at times very moody, shaky, had cold sweats, was sleepy, (starting to see a pattern yet?) going to the bathroom more often than is normal for a 4 yr old and, I hate to say it, her intelligence level dropped. Puzzles she could do in seconds became hard for her to do at times. This was happening just two weeks after my youngest daughter was born and the death of their great grandmother. All of this in the span of one month. Like I said, the summer from hell.
The night before I took her to the doctor I noticed that she was very pale and had dark circles under her eyes. It had been a very hard day with her and she was finally sound asleep in her bed. Looking at her she looked like a starved child from a third world country, despite eating as normally as any other child. The next day at the Doctor's office, the deep down fear that I had been denying to myself came true. Juvenile Diabetes. Worse, a brittle diabetic. You might as well have told me she had terminal cancer. My world changed that day, not for only myself but for my darling daughter. Thankfully, today she is a beautiful young woman who controls her diabetes herself and is on an insulin pump, living her life as normally as possible. She is doing wonderfully. It is for her and diabetics at large that I share these experiences and write this article with my dear friend Padraig.
Lets get Medieval on Diabetes!
Copyright 2009 by Frederick Fenters and Patresha Roehre. Permission is granted for republication in SCA-related publications, provided the author is credited. Addresses change, but a reasonable attempt should be made to ensure that the author is notified of the publication and if possible receives a copy.
If this article is reprinted in a publication, I would appreciate a notice in the publication that you found this article in the Florilegium. I would also appreciate an email to myself, so that I can track which articles are being reprinted. Thanks. -Stefan.