Diabetes is not a disease that follows an exact formula. Every T1D has different experiences, feelings, and emotions. I decided to come up with a questionnaire for my fellow T1Ds to see how they feel about the disease. I wanted to get an inside look at how others cope and maybe learn something from each of them. I was blessed to have gotten responses from people on very different points on their journey with D, some recent diagnosis's and others that have lived with it for well over half their lives. I still consider myself a newbie after 3 years, after all my D is still just a toddler as my friends remind me when I get upset. Someday this will be my "normal" but for now I just live in the present and try not to worry about the future. I have to admit that when I first read through the responses I did get a bit teary eyed, not because I was sad or felt sorry for us but because of the harsh reality that each and every day is a struggle in some way. Here is a sneak peek into the life of a T1D....
Female age 17, T1D 1.5 years
Age when diagnosed?
15
Do you prefer shots
or the pump? I would prefer shots over pumps only because the pump doesn’t do the inconvenient part of
checking my blood sugar for me. The idea that I may not be able to wear a tight
dress and that people may be able to occasionally see it on my hip makes it
even less appealing to me.
Pump type? N/A
What a high feels
like in your own words… My highs don’t necessarily come with a feeling but
they come with inconveniences that allow you to know that you have diabetes.
The peeing every hour, the constant need to eat, and the extreme thirst seems
to be the worst of the highs. The highs tend to be the most embarrassing
because the constant need to eat with no satisfaction. Though my highs tend to
stay around 300-400 I once had a blood sugar that caused the glucometer to read
"HI", not even giving me a number.
What a low feels like
in your own words… My lows start with a feeling of heat and aching in the
neck. The lows create a feeling of heat around my brain stem almost as though
they are going to disconnect. The shaky hands are a dead give away. I find my
self frustrated with little things that people do and only wanting to be alone
in bed. They cause me to not be able to walk if it is bad enough. If i have a
low in the middle of the night is it very good about waking me up. In the
beginning of my diagnoses I had a low probably every 3 nights and every one
woke me up. They wake me up with sweats and a rapid heart beat.
Favorite injection
site for shots/infusion sets? My favorite injection site is my stomach. My
stomach is easily accessed and has enough fat to the point that it rarely hurts
to inject.
Preferred ways to
treat lows? I treat my lows with a bag of skittles. It’s easy to shove
large amounts of candy in my mouth. In the beginning I would wake up at 2 a.m.
and spend the rest of the night in the kitchen with a counter full of wrappers.
What is more annoying
high BG or low BG? I would probably say that High Blood Sugar is more
annoying than low only because i become an inconvenience with always having to
use the restroom and always needing something to drink. I would say that low is
bad but only because it wakes me from my sleep.
Worst part of D? The
worst part is the motivation that you need to take care of it. Always being
told that you are going to ruin your life if you don’t take care of it but just
wanting to be like everyone else, and not even have to worry about that kind of
stuff. And possibly the expenses that come with the disease.
Female age 20, T1D 3 years
Age when diagnosed?
17
Do you prefer shots
or the pump? Pump, I just feel normal with it on, I do not even feel it as it has become part of me both physically and mentally. I had to go back to shots for 48 hours when my pump malfunctioned and it was bad news.
Pump type?
Medtronic MiniMed Paradigm with Dexcom CGM
What a high feels
like in your own words… Brain dead, slow, crabby, nauseous, have to pee
What a low feels like
in your own words… Tired, shaky, lightheaded, easily annoyed, hungry
Favorite injection
site for shots/infusion sets? Stomach
Preferred ways to
treat lows? Apple juice, glucose tablets, almonds
What is more annoying
high BG or low BG? High BG usually because it can linger for several hours
and really knocks you down. Certain lows that keep getting lower instead of
higher are also awful.
Worst part of D? Not
being in control. The unpredictability really gets to me because one moment
things can be fine and the next I could be averting some sort of disaster.
Being a perfectionist does not help and I often blame myself for things that
are really out of my control.
Female age 17, T1D 4 years
Age when diagnosed?
13
Do you prefer shots
or the pump? OK with both, but pump is more convenient
Pump type?
Omnipod
What a high feels
like in your own words… Brain and body disconnect. It is hard to
concentrate and sometimes I feel sleepy.
What a low feels like
in your own words… dizzy, super hungry, really shaky, out of energy
Favorite injection
site for shots/infusion sets? Lower back and stomach
Preferred ways to
treat lows? Glucose tablets and juice
What is more annoying
high BG or low BG? Low BG is more annoying because sometimes I just feel so
super hungry and shaky for half an hour.
Worst part of D? Days
when I have to keep taking glucose tabs to avoid going low on the ice since I
skate 5 hours a day. It can get annoying!
Female age 17, T1D 9 years
Age when diagnosed?
7
Do you prefer shots
or the pump? Pump
Pump type?
Medtronic
What a high feels
like in your own words… Thirsty, anxious
What a low feels like
in your own words… Tired, shaky
Favorite injection
site for shots/infusion sets? Legs
Preferred ways to
treat lows? Juice
What is more annoying
high BG or low BG? High BG
Worst part of D? Constantly
monitoring how you feel and always checking your blood sugar.
Female age 21, T1D 12 years
Age when diagnosed?
8
Do you prefer shots
or the pump? Pump
Pump type?
Medtronic MiniMed Paradigm
What a high feels
like in your own words… sick, tired, crabby, no focus, stressed/anxious,
AWFUL
What a low feels like
in your own words… Drunk, sweaty, shaky, dizzy, weak, hard to breathe
Favorite injection
site for shots/infusion sets? Hip
Preferred ways to
treat lows? Juice
What is more annoying
high BG or low BG? Depends- highs take longer to recover so you feel
absolutely awful for a longer period of time. Lows are inconvenient if I’m
trying to do something physical because I can’t work through them. You actually
have to stop what you’re doing to treat a low but not to treat a high. So they
both suck.
Worst part of D? Trying
to explain D to people who just don’t quite “get it”. It’s a livable disease and I try to live it
as normal as possible so most people don’t see the affect it has on my life and
how much of a struggle it is because we try to show that we are strong.
Male age 26, T1D 16 years
Age when diagnosed?
10
Do you prefer shots
or the pump? Pump
Pump type? Medtronic
MiniMed Paradigm
What a high feels
like in your own words… dehydrated, sick to the stomach, overtired
What a low feels like
in your own words… Shaky, incoherent, tired, really irritable
Favorite injection
site for shots/infusion sets? Stomach
Preferred way to
treat lows? Whatever sugar I can find and some kind of complex carb to go with it
What is more annoying
high BG or low BG? Not sure
Worst part of D? going
to the doctor
Female age 49, T1D 38 years
Age when diagnosed?
11
Do you prefer shots
or the pump? Pump
Pump type?
Medtronic MiniMed Paradigm with Medtronic CGM
What a high feels
like in your own words… sick to the stomach
What a low feels like
in your own words… confused
Preferred ways to
treat lows? Glucose tablets, careful not to over correct lows.
What is more annoying
high BG or low BG? Lows are more annoying especially when I’m figure
skating because it becomes dangerous.
Worst part of D? I’ve
learned to deal with Diabetes after 38 years but the worst is people who just
don’t understand and don’t want to. I have a mother-in-law who insists on
giving me sugary drinks and food even after 25 years.
Female age 59, T1D 56 years
Age when diagnosed?
3
Do you prefer shots
or the pump? I used one shot per day of long lasting insulin for 22
years. Used 4 shots a day or more as
needed, with regular insulin for 4 years and then a pump.for the past 30 years.
Pump type?
Medtronic MiniMed 530G and Enlite CGM
What a high feels
like in your own words… I have always been extremely brittle, with sugars
moving quickly in both directions. Lows in the 20's highs in the 300 to 400 or
so range. I have had diabetes for 56 years and the high and low feelings have
changed much over the years. I always
"feel different" but sometimes a high feels
like a low and a low feels like a high. Soooo I often have to take a blood test to be
sure of what is really happening. Highs can be feelings of anger or frustration
or a sick feeling in my stomach, when I drink water it stays in my stomach but
the thirst is not quenched.
What a low feels like
in your own words… I sometimes get black dots before my eyes, or I feel a
bit off, or I am dizzy, or can't make up my mind.
Favorite injection
site for shots/infusion sets? When I took shots I preferred the outside of
my arms and legs. Now that I am on the
pump I use the lower abdomen for most of the time and the lower rib cage
sometimes.
Preferred ways to
treat lows? I usually treat lows with glucose tablets when I am not
home. At home I use fruit juice or a
small candy bar. I do have to be careful
as I can easily over correct lows. It
takes along time for my body to acknowledged
the correction! It
used to takes minutes to feel better, now it takes 20 minutes or more to feel
better or normal... it is very
frustrating.
What is more annoying
high BG or low BG? The lows are much more trouble as it takes 20 or more
minutes to read again or get back to gardening or whatever I was doing when it
started.
Worst part of D? The most frustrating thing is that between the doctors and myself, I am still brittle. I have had diabetes all of the life I can remember so I just deal with it. All is well...
My first observation after reading through all the responses is that I am not alone when I say being low makes you SHAKE like a freaking leaf. It's interesting how many came up with similar or identical adjectives to describe different symptoms. Being sick to the stomach was the most common high symptom along with a brain and body disconnect, which I totally can relate to. The funny thing is the low and high symptoms are practically interchangeable which always freaks me out and is the reason why I am unsure sometimes if I am high or low.
The sobering part of this analysis was the discussion of the worst part of D. It breaks my heart that one of the greatest annoyances is how outsiders view us. They don't always understand that we did nothing to cause this, we can eat anything we desire within normal limits, and we are as NORMAL as a human can get. There is enough crappy aspects of D, and it would be awesome if everyone could just "get it", but that is not possible in our current society. That is why I am so involved in advocating and educating about T1D. One interviewee said it best when she stated, "I try to live it as normal as possible so most people don’t see the affect it has on my life and how much of a struggle it is because we try to show that we are strong". That is definitely how I feel about the disease, but I also think it is ok not be strong all the time, it is good to talk about it and find new solutions. I am so thankful for the Diabetes Online Community (DOC) which as provided me with much guidance and many laughs over the last few years. It is never too late to get involved.
This project allowed me to interact with many diabuddies, those that I already knew and I also had the opportunity to talk to new ones. It always gives me a renewed outlook and reminds me that I am never alone. We are in this together on a daily battle against the D-monstor, armed with our insulin pumps ready for battle. The world better watch out!!
Over the next few weeks, I would love to have more questionnaire's filled out so if you are interested please contact me.
The sobering part of this analysis was the discussion of the worst part of D. It breaks my heart that one of the greatest annoyances is how outsiders view us. They don't always understand that we did nothing to cause this, we can eat anything we desire within normal limits, and we are as NORMAL as a human can get. There is enough crappy aspects of D, and it would be awesome if everyone could just "get it", but that is not possible in our current society. That is why I am so involved in advocating and educating about T1D. One interviewee said it best when she stated, "I try to live it as normal as possible so most people don’t see the affect it has on my life and how much of a struggle it is because we try to show that we are strong". That is definitely how I feel about the disease, but I also think it is ok not be strong all the time, it is good to talk about it and find new solutions. I am so thankful for the Diabetes Online Community (DOC) which as provided me with much guidance and many laughs over the last few years. It is never too late to get involved.
This project allowed me to interact with many diabuddies, those that I already knew and I also had the opportunity to talk to new ones. It always gives me a renewed outlook and reminds me that I am never alone. We are in this together on a daily battle against the D-monstor, armed with our insulin pumps ready for battle. The world better watch out!!
Over the next few weeks, I would love to have more questionnaire's filled out so if you are interested please contact me.
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