TYPE 1 Unification
68 Members

Management and Difficulty

Everyone has an opinion as to how you are doing. How well do YOU feel like you manage life with diabetes? What are some of the difficulties (frustrations, comments, expectations, side effects, etc) you have while living life with Type 1?

7 months ago

Though I realize I float a bit higher than I really should, I feel as though I have been managing well.  I see and know others who pay no attention to their managment out of laziness, apathy, or various other attitudes, and I wonder why those close to me could ever see me and get frustrated with me running a little high from time to time.  I still prick and stick regularly, and it is so difficult when people with the best intentions attempt to 'hold me accountable' to things they don't know much about.  By that I mean how it all feels...how it feels to actually be low and how scary that can be when you have no control over your bodies reaction.  To be willing to float a little high but not dangerously high in order to be absolutely sure you won't get low in the middle of the night...or at all.  Those are some of the common frustrations I end up with.  The routine is monotonous but not much of a hassle.  I don't mind the needles or the pain of pricking (which of course hurts worse than the actual shot...another thing those without the disease cannot seem to understand).  Its the sense that you are the only that really understands what is going on in your body, and well-intentioned friends and family don't. 

This discussion is important for that exact reason; to hear from people who DO understand.

7 months ago

 

MY DIABETES PET PEIVES...
 
 
1. of all the things i've lost, i miss my mind the most... getting boggled, loosing memory..
1. (tied for first place) pricking finger on a nerve ending, stays sore for days..!
but you're only reminded of that everytime you try to pick up something with that finger.
2. ketones pissing my pants.
3. when my diabetes misplaces my head and emotions, and snaps at my boss. or at people i love.
4. lugging extra supplies, crap + Food, around everywhere.
5. waiting for BG to comply so you can get back on the road and finally continue driving.. getting there late because of it.
6. when a household member unthoughtfully disposes of the box which has the carb content of the packaged foods printed on the side.
7. Insulin VIALS. (prefer pens)
8. the experience, and, that feeling, right before you black out.
9. moodswings, crying in a fit for the littlest reasons
10. wasting supplies, infusion sets, insulin, test strips etc.. due to problems.
11. Meters that only measure in mg/dl.
12. mysterious high or low BG's.. left unexplained.
13. sick days.
14. freezing after coldsweat; ...damp coldsweat bedsheets and clothes.
15. feeling helpless.
16. needing a whole closet "just For Diabetes".
17. BG swing's lethargy.
18. Shape of Test Strip bottles.
19. Broken Medic-ID Bracelets.
20. dirty looks from people who can't stand needles or the sight of blood or whom are quick to pass druggie judgement unknowingly.
21. bent needles, bent cannulas.
22. when i tell somebody i feel low, and they say "..oh, you need to take your shot!"... i need sugar. not more insulin!!!

these are just some of the annoying aspects of diabetes that drive me to lose my sanity.

7 months ago

number 22 just makes me laugh. "Its funny cuz its true."

7 months ago

those are for the most part on the superficial side of annoyances.. however on the deeper level, there is that constantly lingering uncertainty of life, a hidden subliminal anxiety that holds on to you at every turn and every opportunity.. you never know whether diabetes will eventually prevent you from doing the thing you want in lifewhether in the future, or in the very moment., even though you may put your hear and soul into getting your dreams and goals accomplished.  .. this is what irks me the most presently....    diabetes isn't exactly that hallowed angel that sits kindly on your shoulder.

 as far as how i feel currently i am doing .. as far as daily living management of the bg's and al that, .. i think coming from where i was , i've definitely come a long way.. but being at a 7.4 a1c, i still have a long way to go.  work hard at it, but take your victories as they come, lil tid bits at a time.    sometimes the more we dwell on the difficulties, the harder it is for us to move on past them.  de nile is a flowing river.. at least the way i look at it is this difference; that if you don't think about the bad stuff, its easier to keep floatin on down doing what you gotta do to maneuver the boat and not panic.  i've simply just gotta keep my life in motion. .. row row row your boat gently down the stream...merily, life will bypass the bad dreams. 

7 months ago

I love #22.

7 months ago

I hate it when I mistake a perfectly normal adrenaline rush for a low, and instead of having fun like a healthy person would, I have to stop & check my glucose and be ready to gobble some carbs.

I hate that I had to lie to the SCUBA instructor (& take off my pump for the day) so they'd let me go on a introductory dive (I'd already been once a few years ago), and then I was so out of sorts I had a panic attack and didn't get to dive anyway.

I hate that sometimes I'll skip the cake, cookies, donuts or whatever's available at work (we MAKE that stuff, so it's always around) if I don't feel like eating it because I want to be "good" or not gain anymore weight.. and people say "HAVE SOME" like I'm missing out on some great opportunity.  But then if I do indulge people say "YOU SHOULDN'T" because.. well... I guess they don't want me to keel over on their watch.

I hate knowing that I can't survive without civilization-as-we-currently-know-it, since I have no idea how to manufacture insulin or needles.

I hate that despite how hard I try at any given time to have good glucose readings, the next reading could be out of line, and what I do this month doesn't count next month.. I'll always have to do my best, FOREVER.

I hate when people complain that their glucose is "all over the place" meaning it got over 110 once.  And I hate feeling angry at them for having better control than I do.

I hate when people don't know the difference between Types 1 & 2.. especially if they're diabetic themselves.

I hate that I, ultimately, am responsible for my own health when it's such a pain to manage, and that I can't share the workload with anyone.  And I hate it when they remind me that highs and lows are my own fault, even when they don't know that everything I do impacts them, and it's just not reasonable to know the effect of every action, food, beverage, mood, or duration.

But I don't hate the diabetes.. it's just something I live with, waiting for the day when it can go away.

7 months ago

that is Funny.......... #20 seems to happen to me all the time. #22 is Hilarious. I also hate it when others say "Can you eat that?"

7 months ago

I do relate to a lot of your comments below! I can't even put my frustrations about the whole thing into words. I appreciate reading about others with the same struggles. Thanks

7 months ago

Wow Midnight, thank you for such an eloquant list. With being so new, I AM SO GLAD to read this! It makes me feel better to understand that the anger (for lack of a better description) I have is "normal".

Becki, I too hate that diabetics don't know the difference between 1 & 2.

Here are a few I don't think have been listed:

  • I hate being told "it's no big deal, my sister has it". (WTF ever, I know what your sister is going through, and it IS a big deal. She has something to think about every second of every day. EVERYTHING affects diabetes; it has a LOT of power.
  • I have a co-worker that compares me to her friend all of the time. She tells me things like "Why do you take a shot before you eat?, She never felt bad; why are you so moody?" I'm like, are you sure she was diabetic? It sure sounds like she didn't take shots. She says she did, but not all the time. Who knows, I figure the woman hid all of her bad feelings very well and was probably quite ill but never said anything. I don't know, but what I do know is: DON'T COMPARE ME TO YOUR DIABETIC FRIEND I AM ME, I CANNOT HELP MY EXPERIENCE, AND DAMN IT I AM DOING THE BEST THAT I CAN!
  • I hate that at 34 my cycles have changed. (Sorry guys) The first one after diagnosis was a week early and VERY emotionally charged. The second, on time, but lasted SIXTEEN days. I hope to god this does not continue like this!
  • Lastly, I hate that I find myself trying to figure out what I should have done differently.
7 months ago

You have all said it beautifully. I agree with and experience all of the problems mentioned, except for the one about the changing cycles! But there is one more thing I hate:

  • All of the Type 2s who think we have the same illness. Many of the Type 2s I work with talk about how "we" have to watch our diets. Then, I watch them eat like pigs without taking any insulin! I love you Type 2s, but as far as diabetes goes, we have nothing in common.
7 months ago

THANK YOU Douglas!!!!

7 months ago

Midnight I luv 14 and 22 thats me hunney.. its all so true ,and Dawn ,bang on right  I thought i was the only one who got compared to " my friends sisters cousin whos had diabetes for 47 years and is 92 with no problems" grrrr what is wrong with these people??? Be nice to us.... I wish i could have one wish that not for me but for my 9yr old son he could have one day back as a " normal" kid , instead hes injecting like holy shit and in therapy cos he just cant come to term with not being able to be a rufty tufty boy who had a dream to join the armed forces..so when they start ,before they open their mouth, i say go stuff a mars bar in it dude and move out of my way!!! ( im a nice person really just sounding off and cranky - high bloods) luv to all x x x x x x

7 months ago

I've got to say that with your number 1 complaint you need to be using the freestyle meter. It is one of the best diabetic inventions besides the original meter itself. I mean I can use a microdrop of blood from anywhere on my body and I don't feel a thing. I get the endo to write a script and the supplies are covered by insurance.

Your sugars are swinging too high and low. If you have the opportunity you need to get a pump. It sounds like you are not taking enough fast acting insulin when eating (hence your ketones) and crashing from not eating when your longer acting insulin kicks in.  If you could get a pump you would see at least half your problems disappear.

My biggest complaint about diabetes is the attachment it makes on my life. I need to travel with insulin (or know where to get some) I have to have glucose tabs in my car (and sometimes in my pocket) the meter can never be too far... and people look at me like I am moments away from having a seizure and blacking out (even though I never have)

7 months ago

Hey Butterfly,  My dad was a nurse and he taught me to never poke the very end of your finger cuz that's where all the nerve endings are.  Instead, poke on the side of the end of your finger.  Believe me,  there's much less pain.

7 months ago

This discussion reminds me of an email I post on MySpace,  Read and enjoy

Why diabetes is awesome

* In a group hostage situation you can be sure you'll be among the first to be released, faster than you can jingle your MedicAlert bracelet and say "hey, does anyone have a drink? I'm feeling thirsty ..."

* You can speak with some authority on the subject of diabetes - unlike say, the subject of the current up-to-date situation in the Middle East - and wow friends and family with statistics and lots of complex, polysyllabic words like "hypoglycemia"

* You can demand regular sex from your partner and justify it on the grounds that it's part of your medically prescribed exercise routine

* Thwart the system and use it to get out of tricky university exams

* When friends are arguing about where to go out to eat, you can say "I have to eat NOW" loudly - which usually means that they will exchange worried looks and hurry to the restaurant of your choice, little knowing that really you were just hungry and didn't feel like Thai

* Who wants a fully functional pancreas anyway? It's so common.

* Even though you may have no letters from that secret admirer, you'll always have diabetes-related junk mail so you can know at least that you'll have something to pull out of the mailbox in case neighbours are watching

* You get to finely hone your swearing abilities with all those times when your BSL isn't what you expected

* Women with diabetes taste sweeter (I'll leave that to your imagination!)

* Enjoy the giddy feeling of living dangerously ALL THE TIME: "Bungy-jumping? A walking tour in Zaire? PAH! I have DIABETES!"

* Always good emotional blackmail in a family fight (I've heard other people do this ...)

* When annoying men ask you "why do you always drink Diet Coke? You're so image- conscious. Girls are always worried about their weight.." you can reply with "I have diabetes" and watch in delight as they turn bright red and mumble an apology.

* Thanks to (occasional of course) hypos and very high blood sugars, you can experience unique body sensations and hallucinatory adventures without the use of illegal, expensive drugs: a cheaper night out!

* Should you ever meet that special someone and s/he happens to have diabetes, you'll always have something to talk about during those Awkward Silences. You can also employ unique flirting techniques: "I'll show you my injection bruises if you show me yours ..."

* Should you ever NOT meet that special someone on a blind date or otherwise, just pull out your handy drug kit and excuse yourself for a well needed "fix" in the toilet.

* Getting a tattoo is a breeze - it just feels like a few more injections than normal

* Amuse yourself by trying to predict exactly what your BSL will be after that piece of sugar-coated mud cake, with honey and ice cream on the side

7 months ago

I am now unemployed. Was a mail carrier for the post office for almost 20 years.  One day I was sitting in my jeep, taking my insulin, getting ready to eat lunch...which I had to cram in my mouth in 30 minutes...when someone walked up to my door. I know they saw me inject myself and the look on their face was priceless. I could just hear their thoughts...yeah this will be the next guy going postal that we hear about, sitting out here doing drugs.

7 months ago

LMAO Judy, thanks for sharing!

7 months ago

I really enjoyed reading everyones posts so far. My daughter who is 8 seems to be adjusting rather well so far over the 9 months since we found out. I initially thought that when we would be out&about in town it would be best to do her BS checks in the bathroom as well as her shots, but she told me theres no need to hide what she has! The wisdom of children is amazing! Now I get parents asking me about it and what to look for. If that one parent talks to one other parent that helps spread the word of what to watch for.  Would some of you say that it is harder being diagnosed as a young adult (18+)? Im hoping that since it was found so early with my girl that it will be a second nature to her by the time she gets older. I could not imagine being my age, and out of the blue finding out I had it. We as adults have set ways of life and adding this to the mix must be hard to do. I do wish all of you the best, my heart and prayers are with all of you!

7 months ago

Thanks for the comments, DeAnna. Your daughter sounds like an amazing young lady. I have 3 daughters of my own, and I'm so thankful that none have them shown any signs of diabetes yet. If somebody in the family has to deal with this, I'm glad it's me I guess.

7 months ago

Deanna, I was diagnosed at the age of 17 and yes it was very difficult having to make so many life changes.  Not to mention the problems I had with accepting my sudden weight gain when I started taking insulin.  I would not take my insulin because I knew that I could loose a lot of weight in a short time.  I almost died once because of this.  When your daughter becomes a teenager, be aware that this can be a problem.  Check out Ashley Wolfe's blog.  She also dealt with this problem when she was younger.  Your daughter sounds like a very strong person and I wish her and you all the best.  Because she was diagnosed at such a young age, this disease will most likely become second nature to her, especially since she is so open about it already.

7 months ago

Judy...right on !!!!!

What annoys me most is the "sweating" during a "low". Try being in an air-conditioned restaurant when it's happening, too !!!!

Then there's the people who think they're "helping" me by keeping the chocolate away. I was working in a women's retail store and there was little chance to go and eat when a "low" was hitting ( talk about "living dangerously" !!), so the "sweets" up at the check out were the only way I *could* take care of the lows....

A thought from when I was diagnosed...what better disease to give a "control freak" ???

5 months ago

Some part of me really wants to freak people out some time and draw my insulin from a spoon. (I'd sanitize it first, or course!)

5 months ago

Although I've had diabetes for about 20 years it sure is nice to read all of these comments and know we are not alone.  My pet Peives are:

1.  People using diabetes as an excuse.  Yes we all have to deal with more things than non diabetics however I refuse to let it stand in my way of accomplishing the things I want in life.

2.  Having to pack all that crap when I travel!  I travel about 50% of my time and sometimes I am gone for 2-4 weeks.  I am sure I don't have to tell you guys what size bag I need just for my supplies!

3.  Type 2s.... I have love for everyone but I agree with Douglas we need to draw the line between T1 and T2.  I know this doesn't apply to all T2s but most of them can cure themselves by watching and controling what they eat and exersizing.  I wish it was that simple for us T1s.

Now one thing I love about being Diabetic... I met my girlfriend (also T1) when she was assigned to me as my nurse and pump trainer. 

5 months ago

I kid you not...One time..I pulled out my insulin pouch, and asked everyone if they had seen the rest of "my works"

The looks were priceless I had to do it!

3 months ago

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