A question that gets thrown around frequently in the Diabetes Online Community [or DOC] is that of “What does a low blood sugar feel like?” My friend Jamie lives in the Toronto area, and has been living with type 1 diabetes for over twenty years. Jamie is also on the Chronic Roadtrip planning team, and we have had several amazing Skype and Twitter conversations on advocacy. Today, I’m thankful to have Jamie here sharing another bit of her creative diabetes advocacy (like her whiteboard at work, which I love!) as she shares yet another perspective on living with an invisible illness with a creatively written post! Thanks Jamie!

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You sit next to her on the train every day. She is a lovely woman who chats about her day, and you chat about yours.

She shares her hopes for a promotion. She talks about the sweater she almost bought but couldn’t bear to pay an outrageous fortune for it. She complains about the fight she had with her cell phone provider. She listens to you as you banter on about your workday.

Then she falls silent. She opens her purse and rummages through it. You close your eyes – it’s been a long day.

Then you feel a tap on your knee. You open your eyes and she’s looking a little flushed, and asks you if you happen to have any candy. You do, and hand her a crumpled bag of Skittles that has been lurking in the bottom of your purse. She looks relieved. She tears open the bag and eats them, then leans back in her seat and closes her eyes.

After some time passes, she perks up again and continues her banter about her daughter’s new job, and about the fact that her vacation is only “5 more sleeps”.

Pretty normal stuff. Right?

What you don’t hear is her internal conversation. To outsiders it would sound like a foreign language. It is a stream of consciousness, a constant underlying hum in her brain.

Am I high? No, it’s a low. Crap. Did remember to I stick my kit in my purse before I left? I don’t know. Can’t remember. I did. Ok. Test. Why do they make those stupid strips so tiny and they stick together. Did I bolus too much for that cookie? It was 3 hours after I had lunch. Maybe it was too soon to bolus. My pump said I didn’t have any IOB. Crap. I feel low – 3.1. Crap. I AM low. Where are my lifesavers? Stupid me. Stupid black hole in my purse. Why won’t my fingers work? Maybe she’s got something. She’s sleeping! Should I wake her? I’m soooo hot. Why don’t they turn on the air conditioning in here? I don’t know. YES!! Just tap her on the knee. She won’t mind, right? Thank goodness. Thank you! I wish I had a drink. I HATE cottonmouth.

This is the face of a person with Type 1 diabetes (aka Juvenile Diabetes, Diabetes Mellitus). This is the face of an invisible illness.

Type 1 diabetes requires constant management and frequent interaction. Blood sugar needs to be tested 8-10 times a day – sometimes more. Many inject insulin several times a day. Others use insulin pumps which pump insulin constantly, but it doesn’t end there. No matter which method, people with diabetes must count carbs for everything they eat, and get it right. They must add (or bolus) extra insulin – and get it right, for even a small error can cause a “low” or “high” blood sugar which must be dealt with by adding more insulin when blood sugars are higher than they should be, or have some “fast sugar” to counteract a low, which can lead to many physical symptoms – anything from sweating, confusion and even loss of consciousness.

These are some of the immediate issues that must be considered before any worries about complications we’ve all heard about, like kidney failure or blindness. Of course, people with diabetes worry about these things too, but it is so much more than that. The management is constant. The worrying is constant. The inside monologue is constant.

There are no breaks. The internal conversation does not rest. This is the hidden illness of diabetes.

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Jamie lives with her husband Larry, and is an advocate for both diabetes and accessibility awareness. In addition to three kitties and a dog, a member of the “furball” part of Jamie and Larry’s family is Keeta, Larry’s guide dog–accessibility for people who are blind is a big part of what Jamie advocates for!  Jamie enjoys reading blogs and collecting stories in InkStain’D, . You can find Jamie on twitter at @InkStain_D and her blog at Flying Furballs!

My friend James and I connected several years ago because of our asthma, and our desire to be physically active in spite of our lungs–we have also had some good talks on spirituality and religion and our past and current struggles within each. In the more recent past, James has been diagnosed with major depressive disorder, borderline personality disorder and autism, and has become a mental health advocate as part of his journey in healing. I am grateful to have him sharing the raw and real story of one recent experience in particular.

Today is Suicide Awareness Day. Coincidentally and unfortunately, James touches on this subject within his guest post. This post may be triggering if you are experiencing depression or thoughts of suicide. Please seek help immediately by visiting your local emergency room or by finding a suicide/crisis hotline in your area.

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When I think of an invisible illness, I think of people suffering from physical ailments. I think of those in severe pain or those having troubles taking a breath. I think of those illnesses that are so debilitating that a person has to rely on mobility devices. There are so many invisible illnesses out there and the incredible people who suffer through them, I just can’t begin to spotlight them in this post.

I can spotlight at least one that my wife suffers though, Psoriatic Arthritis. All I can say is this is an awful illness. On damp days my wife can’t get out of bed because it hurts to move. That is not even half of what that disease does to a person. Psoriasis takes over and makes a mess out of everything. My wife’s ears and forehead is over run by psoriasis. I feel bad for her because she feels so unattractive. I wish there was something I can do but there isn’t. In a way my wife’s illness is visible but the pain is not. She is a brave women and toughs it out everyday. This is just one of those incredible people out there.

I am not without a couple of chronic physical illness myself, asthma and Paget’s disease. However, I am not going to write about those diseases.

I am going to talk about an illness that is not physical. In some ways, it is not discussed much because the majority is afraid of it. Plus, from my observation, there is a stigma running rampant for those who just don’t understand. What is this illness? Depression.

See, I have clinical depression or being more technical, major depressive disorder. Yes, I know everyone has had some sort of bout with depression. What is the difference between clinical depression and the average depression most people feel? Usually, when some one is feeling depressed, they snap out of it in a few days, mostly because they are just sad about something. Clinical depression is nothing like that. I can only speak for myself on this, but the sadness is way more intense and it doesn’t leave my thoughts after a couple of days, sometimes not even a couple of weeks. Lately, to be honest, not even a couple of months.

I think to be diagnosed with major depressive disorder; a person has to have had multiple attempts at suicide. That is what I believe my doctor told me anyway. Yes folks, I have attempted numerous times to end my life. Thank goodness, failing in all attempts. I told a counselor once that I am so bad at suicide. I am just going to quite trying. She couldn’t help but snicker a tiny bit and told me my since of humor was still around.

Sadly, there has been a recent attempt. I thought maybe I would share that with you so you can get a real example of my life.

My personal life is a mess. To be honest, I am not sure anyone would come out unscathed from what I am dealing with. There was a blow-up at home that sent my mood spiraling downwards. I have been through quite a bit of therapy, so I have some idea how to combat major down turns in my mood. Unfortunately, this one caught me a tad off guard.

Exercise is a big part of my therapy. It really works to improve my mood. With that said, I started getting back into cycling. I used to love cycling when I was young. Even today, I love it a lot. So, by the third day, my mood had plummeted to dangerous levels. At this level, escape is a must. I decided to jump on the bike to ride off the sadness. Little did I know at the time, I was going to hurt myself.

I started riding mid afternoon on a roasting hot day. So hot that salt crystals formed on my skin surface. That normally does not happen when I ride. I had it in my mind that I was going to push it to the max, and I did. The whole time I didn’t realize that I was not taking care of myself. I should have calculated my water stops and electrolyte loading a tad better. What did I end up doing? I ended up riding myself into heat exhaustion. Worst part, I was out in the middle of no were with no shade or water. I was so disoriented that I missed my route turns and couldn’t use the map on my iPhone to save my life. So, I figured enough was enough. I found some shade from a row of corn and tried to get my bearings. I should have called my wife but the only thing I could think was calling 911, so that’s who I called.

I was transported to the emergency room and put through a full psychiatric evaluation. Actually, no big deal now days, I’ve been through it a few. I was a prospect for hospitalization but my doctor thought it was a bad idea. Therapy was going to be more effective for me and I wouldn’t get that at the hospital. The only thing the hospital could do for me is keep me safe.

On that note, if anyone is considering self-harm: Please seek help by going to an emergency room near you. They can really help you, even though you might feel that nothing can fix you. Been there and I got the help I needed, it works.

But I digress.

It is possible that the day in question was not really a suicide attempt, but in reality me disregarding all my training in warm weather. It was just too hot of a day and I was just asking to get sick. Yes, that is possible. Frankly, I have rode and walked in these conditions numerous times without much trouble. Plus, I was only 33 miles into a 50 mile ride. I did a 64 mile ride 6 days earlier. This ride should have gone off with little trouble. Like I said, I wasn’t in the right frame of mind and not doing what was needed to have a successful training ride.

To be brutally honest, I am not sure I am the kind of person that could put a noose around my neck. I have always tried things in hopes that death was the final outcome. Thankfully there still is a part of me that believes in self-preservation.

So, that is a taste of what it’s like to have clinical depression. Is there hope? I can’t answer that question all the time, but I do believe that there is. Unfortunately, this disorder is kept invisible by stigma and it is very hard to recovery in secrecy. I know all about that. No one knows I have this disorder, except manage at work and selective family members. Everyone around me would rather I keep my trap shut. So, not only is depression an invisible illness but for many of us, a forced one.

Maybe in the future through advocacy, we can stamp out stigma and make the world a better place to recover from mental illness. That is my hope anyway.

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Thank you, James, for sharing your story! I can say that you have opened my eyes with this post, and hope that those reading have gained a deeper understanding of what it is like to live with mental health problems and that, one step at at a time, we are helping to decrease the stigma around living with mental illness.

James is a cyclist and endurance walker who has completed several marathons. He lives with his wife and two boys, and in addition to work, is involved with a variety of communities on Twitter helping to support people living with mental illness, autism, asthma and Paget’s disease, and helping to educate those who don’t. James can be found on Twitter at @JamesofRC, and through his blog, Religiously Challenged.

Over the last few years, I have made friends with too many people who live with diabetes to count them all. These people have become my friends, both online and in real life [and some currently online and ABOUT to become real life friends!] and through Twitter and their blogs, I get a small glimpse into their worlds of living and thriving with a variety of types of diabetes. When I was searching for a Fall race to do, the Run for Diabetes in support of the Canadian Diabetes Association grabbed my attention and didn’t let go. Thanks to my generous friends who helped me not only raise but shatter my fundraising goal, and thank you to anybody who has supported me in the physical activity endeavours in the past couple months!  With tribute to Jay, we unofficially called our team “Good Things Run on Insulin!” and got to throw the phrase around and tell the story to a couple people today, which was super awesome.

My friends Sam, Danielle and Julia joined me today, and they were so much fun to race with. We got up at 6 AM (can you say early? I work at 10 AM tomorrow and 7:30 AM for the rest of the term, and my body is going to have no idea what to do with getting up at that hour), got ready, and drove across the city to the beautiful park where the D-run was being held. We preceded the race by visiting the bulk of the booths set up, where the people from Virgin Radio gave us free shirts, and tweeted and facebooked about us (this was the first time I told the Good Things Run on Insulin story!)

Love the tutus and the t-shirts – its team Good Things Run On Insulin! 

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Left to right: Sam, me, Julia and Danielle

Photo Credit to Virgin Radio

YES!

The actual race got rolling a bit late, and in the time we were waiting, literally seven people asked for pictures with us and our tutus. It was a little crazy (stay tuned for those, I know the Diabetes Association has a couple, as do the pharmacy people, as does the Manitoba Runners Association).

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Come on guys, I’m ready to go over here!

Finally, after a lengthy walk to the starting mat, and some sort of siren-esque interlude as the gun, we were off!

Being a walker in a race is awesome, but awkward. People cheer you on, but all the runners run past you all the time, and the half-marathoners have triple-lapped you, and et cetera. Also all the runners are super hardcore, obviously. Here’s some footage of the race, except minus the parts where we had to say thank-you four hundred times when people commented on the tutus. It’s super short, because video-ing is kind of distracting from the task at hand and such.

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You can’t see all the names, but you can clearly see that there are way, way too many people in my world who have diabetes.

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My first chip-timed race! Results TBA!

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How could you not want to walk in this? [Running Room! Want to make a deal and you can use this?]

Hmm… maybe the view literally took my breath away and it wasn’t asthma? 😉

Aside from some of the usual muscle-related off and on pain, my legs were totally awesome this race (and they’d be good now if I hadn’t stopped moving!). My lungs, on the other hand, were just true to the pattern that’s developed. I tried a new plan of attack on this walk, and it mostly worked until the last couple kilometers, and I was still able to amp up a run across the finish line at the end!  Today’s plan involved a neb treatment (a bit less than a 5mg vial of Ventolin–I got sick of doing the treatment, okay?) at 6 AM, the usual meds with an increased Symbicort dose to 2 puffs instead of 1 (I upped the Qvar to 3 puffs instead of 2 a couple days ago). Then, two-plus (with the delay) hours later I took two puffs of Ventolin from the inhaler.  Since my asthma is the most trouble after an hour, or 5.5K-ish, I took two more puffs of Ventolin and two of Atrovent early into the second lap. The pattern of the last longer walk held true, and over the rest of the second half, I think I averaged 1 puff of Ventolin per kilometer, but I didn’t start feeling really short of breath until we started kilometer 8, which was good! I need to stop trying to make sense of this exercise induced asthma pattern, but I really want to understand it so I can treat it better! (Really, I am doing all I can be, which sucks) I really feel that it’s taking me an excessive amount of Ventolin to get through these longer workouts, and I am not super okay with that. To prevent any rebound-flares later on today and to quell the dyspnea already developing, I did another neb when I got home. (The night of my first 10K, I had a really hard time breathing and if it wouldn’t have been for having access to a nebulizer at home, I would have had to go to the ER. Crossing my fingers that I don’t have a repeat of two years ago!)

I had Gatorade at the first station (which I after realized was stupid because why the hell would I need Gatorade by the first stop) but it was also way too strong. I stuck with water for the next few (because cold water > the water from my bottle), threw back a few sips of Gatorade (which Julia described as Mr. Clean. Thanks, Julia ;)) and ditched over half of that one, and stuck to the gross water bottle the rest of the race. I tried the homemade gel at about 7.5K, I think. It worked really well, but it was just too freaking sweet. My pre-race nutrition was also crap, because it involved exactly two bites of some random protein bar that came in the race kit, and about four sips of some almond milk smoothie thing (complete with a carb count on the table! 11g per serving, y’all! I was actually surprised that was the only carb count sign I saw, considering Good Things Run on Insulin and all).

Finally we rounded into kilometer 9, where my friends refused to leave me to go run the last kilometre (I told them to go because I knew pushing myself any harder would be no bueno, but they’re just awesome and told me that we were all finishing together). Halfway through the crowd of people, we kicked into a sprint to the finish line about two-hours after we started, where were unceremoniously handed our medals over (there’s something about when they put the medal around your neck, you know?) to put on ourselves.

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Post race

We walked around for a bit, because when you stop moving is when you start to hurt. A guy gave us funeral home branded water (like “Good health choice doing that race! Now, time to think about when you die! Ouch?) Found the bathroom that had no line by the point we crossed the finish line (it had a huge line pre-race because the porta-potties were still being put up, so we stood around until the Gotta Go guy was gotta gone. Also we had nothing better to do but stand there and dance, really–I’m sure even with the dancing we stood around less time than if we’d have waited in the bathroom line).

Subway had a booth with free sandwiches and yogurt parfaits, so we went and ate free food and sat on a bench overlooking a similar view to this, where Julia ran away from wasps while we had snacks and then headed for home!

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I was happy to be a small part of making a difference today. With charity races, the making a difference is two-fold: the difference in yourself in not only working to keep your body healthy through training and racing, but in your thoughts in how you perceive the good things that these non-profits are doing for people, AND in bringing much-needed funds and support to these organizations that do so much to help ALL of us live the best possible life we can have! I can go out there and have all the fun I want, but it’s not as meaningful if I’m the only one benefiting from it. Just as a Canadian discovered insulin, my hope is that Canada can be an equally big part in finding a cure–and supporting those living and thriving with diabetes while they wait.

After tweeting and receiving a lot of exclamation about home-made gel, I decided to forgo delaying this to be part of the race report as intended (plus, I don’t know what I was thinking because it doesn’t really fit in there anyway). Here y’all go!

I know you aren’t supposed to do anything new on race day, but screw it. I tried a gel in my last race [a 5K last fall–I gotta get more races into my life]. The gel was awesome, it kicked up the energy, and I highly enjoyed my first CarbBoom experience. Also, the gel was free, so I was all over that. After trying my first gel, it’s easy to see why so many athletes use them. However, they come with a hefty price tag [$1.50 per pouch], so I set out to make my own. After a bunch of googling of nutritional breakdowns of things, I loosely based it on this recipe from No Meat Athlete, but did some additional googling and this worked out okay for me:

  • 1/4 cup pure maple syrup
  • 1 tsp water (can be omitted, I added it before the lemon juice and it is extremely thin)
  • 1 tsp lemon juice
  • 1/8 tsp sea salt
  • 2 tsp raisins

It, obviously, worked out to just over a quarter of a cup.  Soak the raisins in a bit of water for as long as you are patient to (mine were in an hour and a half), but mine didn’t all blend completely, which is whatever. The NMA recipe calls for dates, but I don’t think those existed in my house. Also now my entire kitchen smells like raisins.

It doesn’t look super appetizing, but it tastes better than it looks. Also, it’s not full of artificial things, so that’s cool.

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Nutritionally, the issue is, it’s extremely high in sugar thanks to the syrup. I originally intended to use honey, which while higher in some vitamins, was much higher in sugar. Also the honey was granulated, thus the first batch of gel I attempted was gross. Plus I don’t actually like honey, but that’s beside the point. However, Maria pointed out that the point of gels is kind of the sugar. So hooray syrup? I’m also not expecting to down this all in just over two hours [the anticipated time it will take us to walk the 10K–fingers crossed for shorter].

Nutrition Facts 

Serving size: 90g

Total Fat 0.2g – 0% DV

Cholesterol 0mg – 0% DV

Sodium 242mg – 10% DV

Total Carbohydrates 58.0g -19% DV

Sugars 50.6g

Protein 0.2g

Calcium 6%   Vitamin C 4%    Iron 6%

Some rationale:

The majority of energy/carb gels are obviously simple carbohydrates for energy, salt to make up for what your body is losing through sweat, and potassium (the raisins contribute 70.1 mg!) which is used and therefore lost by your muscles during exercise. Obviously the more pure the carbs [this case, glucose in the form of maple syrup], the less work your body has to do to use the carbs [ATP holla!]. Some sites also said that maple syrup packed a more sustained energy source than others (but I can’t be bothered to research the validity of that information–I don’t start school till Wednesday, yo). Fat can slow down digestion and requires more energy to break down, so nutrition before and during exercise should be extremely low-fat or fat-free.

It tastes decent, and the lemon juice gives it a nice bit of a kick to take the edge off the maple syrup.

I’ll report on the actual use of it in the race report tomorrow!

Have you ever made homemade energy gel? What did you put in it, and how did it work?

Jenny Simmons did a blog post earlier based off of the crazy stuff that brings people to her blog. I tweeted the other day a short list of more ridiculous search terms, but . . . here are some more crazy search terms and commonly asked questions that lead people here [with answers!].

Point of decision prompts: These are exactly what they sound like: signs that prompt a healthier choice at the time the decision needs to be made. Frequently, these signs are posted by elevators encouraging use of the stairs [I.e. Burn calories, not electricity], or in prompting healthier food choices [i.e. like sweets? Try fruit!]. They can be used in a variety of situations, and can be created to prompt a positive decision even within your own environment–just be creative! [See the image below for a point of decision prompt example about the stairs]

The MedicAlert conundrum: I get a surprising amount of traffic for people searching about the MedicAlert Canada price increase. I’ll post more on this tomorrow, but essentially MedicAlert increased their membership fees, and people are pissed off. The reasoning, from MedicAlert, is that it “costs more to run a business in Canada than in the US”. As a nonprofit, MedicAlert strives to make membership accessible to the “most people possible” [and offered me a slight reduction on my membership had I chosen to renew, which I did not, but only because I complained.] I also have beef with the fact that identification products that are exactly the same as the American products are 50-75% more expensive. What gives?

Giant Nutella: Yes.

I want to train for 10K runs but I have asthma: Go for it. Asthma may modify how you do things, but it shouldn’t modify what you do. I have trouble running, so I walk, but that is a choice I’ve made, just as choosing to train to run 10K is a choice, too. Start with a slow pace and work yourself up. If you haven’t yet, starting with a 5K is probably desirable, and I know many people who have been successful doing the Couch to 5K plan. One of my favourite fitness-weapons, however, is dailymile.comadd me as a friend! Make sure to take your inhaler with you, and if you’ve been instructed by your doctor, take it about fifteen minutes before you head out to work out. Also, ensure you do a long, gradual warm-up [walking, for example] and some stretching for about 10 to 15 minutes before you run–a long warm-up is imperative to success running with asthma because it allows your lungs time to adjust to the greater demand on them more gradually then if you just go out and start running hard right away.

Jay Greenfeld [and variations of his name, and references to his guest post]: Jay is a counselling psychologist and university professor, and is the author of My Choice – My Life: Realizing your ability to create balance in life. He also wrote a guest post about living with type 1 diabetes. I was fortunate to have the experience of having him as my Physical Activity: Promotion and Adherence prof last Fall. [If you’re googling “Is Jay M. Greenfeld awesome?” the answer is yes, googling student — and don’t worry, I pre-google my profs too, sometimes.]

Playing in leaves: Jay told us to. Legit.

Literal exercise: Literal exercise is the opposite of figurative exercise. I.e. literal exercise is the exercise you are actually doing, whereas figurative exercise is exercise you could be doing but aren’t and are instead sitting on your couch eating Cheetos? [I don’t know. I’m not an English major here, I am majoring in the literal exercise that is kinesiology. I may have had to look up figurative in three dictionaries.]

Cute edges of a cube: I have no idea what this is about.

Taking the stairs: is always a good idea. I made this slide on the subject for when I talk to grade elevens about asthma and physical activity sometimes. It tries to make a good point in pretty colours. Oh and look, a point of decision prompt!

10 flights of stairs a day can equate to 3.1 pounds of body fat lost over a year

Run stairs instead of escalator: You should!

Is physical activity important for a young child: YES! First, play is the way kids learn, and active games and play help to engage kids physically, affectively [socially and emotionally] and cognitively. Physical activity not only helps a child’s body become stronger and more efficient, but also builds thinking and problem-solving skills and helps build motor pathways. Playing in groups helps kids to work together as a team cooperatively, develop moral understanding of right and wrong, and in turn, helps kids to understand their own emotions and feelings, and those of their friends. Physical activities present a host of potentially new experiences for a young child and should be encouraged as much as possible!

AND . . . one of my favourites:

Sphinx wearing a tutu: I can’t even explain. I love the stuff people Google, for real.