Well I posted this on here yesterday and also on my blog. I have received a grand total of ZERO responses from anyone other than diabetics thinking it’s a great idea.
I proposed it to my parents, my brother, sister and wife. They all laughed at me and told me “No Way!” To be honest, I can’t see myself doing it before I was diabetic either. Do you know of anyone or think you could find anyone who would be willing to do it? Personally, I can’t.
I actually basically wrote that same thing for one of the blog carnival topics. You are nicer than I was though - I felt that it should be a requirement for any medical personal dealing with diabetics and they have to do it every year. I also said they should have a little camera attached so we know if they cheated or not.
My wish for doctors, nurses, CDEs and dieticians that deal with people with diabetes is that they have to test their blood sugar, write down everything they put in their mouth and inject saline when they want to eat so they know what we have to do on a daily basis. They would have a little camera attached to them 24/7 so we know if they “cheated” or not. They would also be using a specially rigged meter that would show their blood sugar to be high regardless of what they did. That would be an annual requirement so they get reminded of what it is like. They should be required to take several classes every year. One would be to keep up with new information. The other one would be taught by a PWD and they would have to hear the frustrations that we have with medical personnel.
I don’t see a lot of volunteers. I thinkt that missing the insulin would deprive them of the main challenge. Sylvia Plath briefly mentions her experience with clinical insulin in “The Bell Jar” so perhaps we could arrange that for them too? It would be more fun to use R and N so they wouldn’t know for sure when it would hit!
I mentioned it to my boyfriend over dinner tonight. He thought it was interesting in theory…but wasn’t willing to do it. He’s willing to go as far as doing the Big Blue Test with me, but that’s it.
Disappointed you had no takers, but not surprised. Was really hoping med students would see the value. I’m going to ask my husband to try it for one day. Will let you know. He won’t even let me test his BG, but perhaps if I offer it as a Tu challenge he might.
Some CDEs do this as part of their education process, but only for 1-2 days. In some sense, the extra time doing this for a week does little to increase the shock and it is too short a time to “get used” to it.
I want to brag on my husband for a little bit Background: I am pregnant and have been in discussion with my OB about options for managing my blood sugar during labor (I’m trying to avoid an insulin IV drip). He said that I can wear my pump as long as he doesn’t have to do anything with it. My husband and I discussed it and decided that he needs to know how to operate my pump and test my blood sugar “just in case”.
So we contacted the local Omnipod rep to discuss how to do so. The rep said that we could stick a saline pod on my husband and he could give it a try for 3 days. She came out and trained him just like he was starting the pod. He hesitated at insertion (who wouldn’t the first time?) but he did it. He wore the pod (depsite it being “itchy” to his skin and “lumpy” when he slept on it). He carb counted, corrected (according to my current blood sugar - I was not wasting test strips on him, lol!), bolused, etc. On day 2.5 with wearing the pod, he was kind of done with it. I told him to just take it off and it would be fine. He’d gotten the jist of the trial. He said that he wanted to wear it for the full 3 days because I don’t have the option of removing it when it’s no longer comfortable.
I know it’s not the same as being a PWD. But I appreciate his effort and commitment to learning what it’s like to walk in my shoes. I think he’s a keeper
hey, that’s great idea you bring up there! Instead of wasting test strips on them, make them react to your bs levels! Now we just need to find a way to make them feel what it’s like to experience a low! Maybe several shots of espresso for the shakes and a huge dose of benadryl for the the sleepy/tired effect, or would those cancel each other out? Oh well, was worth a thought I guess. And yeah, none of my non D friends will let me test them much less agree to play diabetic for a day or two. I’m pretty sure one of my co-workers is an un-diagnosed diabetic too, but he refuses to even think about it and won’t go see doctor. Sigh.
But honestly, why would anyone lucky enough to have a functioning pancreas sign up for something like this?
I get lots of empathy and support from my other half but even he would never dream of doing this. And he knows quite well the challenges in my daily routine because I bore him with the minutiae almost every day.
How many of us would sign up to be blind for a week? Or locked into our bodies?
I took a course on augmentative and alternative communication (communication devices for people who can’t talk) last year, and as one of our assignments we had to eat a meal using an AAC device for communication without talking. It was very challenging, even just for an hour-long meal, but I think it was a very valuable assignment because it illustrated a lot of what our professor had been talking about.
Also, as part of my master’s degree (in education of visually impaired children) we had to do several assignments under blindfold (eat a meal, prepare food, walk an unfamiliar route on campus alone), and these were also valuable, although I think less so than the AAC one. Having experience under blindfold or a low vision simulator is actually not an uncommon requirement for people getting certified to work with people with visual impairments. Many programs that train orientation and mobility instructors (people who teach how to use a white cane and travel with little to no vision) have students do a final test where they are blindfolded and dropped off without being told where they are and have to figure out how to get to a designated meeting place using all the same skills they would be teaching a student/client and without removing their blindfold (if they remove it, they fail).
I think the difference with both of the above is that you can’t really do them unless you have training in alternate skills that replace the missing senses/abilities. I think all disability simulations have a real danger of creating the, “Oh my gosh, that was SO scary! I never want that to happen!” reaction if they aren’t done carefully with the right alternate skills in place, rather than the real point of, “These are some of the challenges people face.” (But that’s a topic for another time!) With the diabetes simulation you can still do everything, you just also have to do the extra pain-in-the-butt diabetes stuff. I bet the thing that turns most people off isn’t really that extra work but the idea of having to prick their fingers and take shots multiple times a day.
I am going to ask around and see if any of my family or friends will do this. I doubt it because most of them will probably have excuses like they are “too busy,” but I have some pretty open-minded friends who might be willing to, especially if I shorten it to three days instead of a week!
I’m also now wondering how it would work in the real world because while you can put a blindfold on a person, you can’t really simulate dead beta cells in quite the same way. Because the non-diabetic subject’s healthy pancreas would just mop up any ‘mistakes’. They wouldn’t ever have to face the consequences of manual pancreas management not getting 100% results, because theirs works perfectly automatically.
Hypothetically it would have to be a sort of tandem arrangement. Using the same food/insulin/testing regime of a diabetic tandem partner, plus the diabetic tandem partner’s actual BG readings. Because the non-diabetic’s numbers would always be normal.
Well, I think that’s why a simulation can never really portray reality. Even putting on a blindfold or low vision simulator doesn’t really simulate either one because most “blind” people have some degree of vision, and typically that vision varies depending on lighting, fatigue, their eye condition, etc. etc. So, it’s not really possible to simulate what it’s like to be able to see such-and-such under these circumstances but not under these circumstances, which is a big challenge of living with low vision. It’s also not possible to simulate what it feels like emotionally to have low vision (“I’m not blind, but I’m not sighted either, and I’m getting completely mixed messages from my family/friends/the public, and I can always fake being sighted and this stranger won’t know …”).
Plus, of course, the person knows intellectually that they can always just take the blindfold or simulator off if they get stuck. Not an option for people living with it. If you get lost or your screen reader won’t read your online banking website or you’re applying for a job and don’t want the interviewer to have negative preconceptions about hiring you because of your blindness, you’re stuck finding a solution that doesn’t involve regaining sight!
I think if you had a special meter rigged to show random high/low results regardless of what the person did, you might be able to simulate some of the emotional aspects of diabetes. What you could never simulate would be the fear of future complications and also the physical feelings of being high or low.
I just asked a friend and she said she would be willing to do it all except for the shots, unless she got training from a medical professional on how to do them.
However, I just thought of a way around the shots issue (for people uncomfortable with needles with no training) would be to use a spare pump and just stick the infusion set to the skin and use a cartridge full of air. And I actually HAVE a spare pump …
I’m still going to ask around and see if anyone would do it …
Are you serious? I think this idea is (negatively) funny.
He is definately a keeper!!!
They may not agree to volunteer for it (would you if your life didn't depend on it?) but you probably educated them a little.
Which is always a good thing :)
Just one lateral comment, from a blogger to a blogger. Your choice of fonts and background make it very difficult for older eyes to read your blog. If that is your intent, no worries. But if you want a wider readership then consider a better contrast and font size. For comparison these are my blogs: Born Under a Wandering Star and Type 2 Diabetes - A Personal Journey. Just a sugggestion.
Cheers, Alan, T2, Australia
Everything in Moderation - Except laughter
A cartridge full of air? I don’t have any experience of injecting or pumps, but wouldn’t that lead to serious problems such as embolisms? I’m happy to be corrected if I’m wrong.
Cheers, Alan, T2, Australia
Everything in Moderation - Except laughter
You could just use a needle screwed onto an empty pen. You wouldn’t have to dial up anything, it’s just the experience of taking the shot.
For pens, similar to what Lila said, I would just use a pen with no cartridge at all. Here in Canada our pens and cartridges are separate, so it would just be a pen with a needle screwed on the end but no cartridge inside. You could even still dial up the dose and push the plunger down, because the plunger wouldn’t have anything to push against, so nothing would actually be injected (and it would be impossible to inject air with no cartridge).
With a pump you could fill a cartridge with air and, with the infusion set taped to the skin (but not inserted), any “insulin” delivery would just be air being blown along the skin (again, no possibility of injecting it).
I respect anybody who would put themselves through this, for whatever reason.
Heck, I’m diabetic and I don’t even want to do this crap anymore. I do it because I don’t have a choice. Given the choice, I’d say hell no.