Everyday...a struggle

I start every day buckled in and ready for this roller coaster. I can do it! Just get through it! A freakish high, a plummet to a devastating low and spiraling side-wind while I’m distracted with the kids and work. Before I know it the worst hits me and I feel sick, grumpy and tired…enough already! I want off of this ride! No, this isn’t amusing at all. I cry thinking about doing it again tomorrow.

I do all that I’m supposed to for a month, maybe, until I get so fed up…so discouraged…that I feel like running away from this prison. But running away only makes it worse, only makes the roller coaster toss violently out of control…possibly even de-rail.

It’s obvious I’m “depressed” about it. As I’m sure so many are. I’m not worse off…or better off. I am just looking for some…well… I dunno what I’m looking for. Maybe just a reason to get back on and ride tomorrow.

I already know what-to-do and how-to-do. I’ve been here for 10 years already. But we all know it’s not an exact science. In this situation even angels have broken wings. And I already have my family as three reasons to keep truckin’. I love them so much. But sometimes even love can’t revive a tired soul. Tired. That’s a great word…I’m so effing tired!

Painting is great therapy. Glad I have that, at least.

I’m tired enough to shut my brain off now, I think.

night.

You are not alone Lydia I was dxd 12 years ago and if i sit here and tell you all this hunky dory bs i would be lieing. I think for those of us dxd older in life where we can compare how being without D and after it is frustrating beyond believe…And it is true for me that my family is reason or should be reason enough to keep truckin bbbbuuuttt i too am tired. and it helps to vent in here cause we are all struggling with the same disease A disease with no cure. I am happy that now that i joined TuD i have a reason to get up and get on my computer to see who answered what to someones question…LOL its like a Web soap opera. and i love Art , crafts and stuff and that always helps my depression. I also play games at pogo and met a friend there that is also diabetic…well hope you finally got your rest …vent anytime you please and im going thru a hard time sleeping phase so you can write anytime…

not that i revel in your suffering but it is nice to know that i am not alone in dealing with it. i sometimes get a lot of criticism from T2Ds that think i am just being irresponsible and throwing a pity party. so now the only one i ever vent to is my husband on occasion. so i was reluctant to begin this membership. ZoZo, I to am in automatic mode. Each day is just comes and i take it as i can. I just started the omnipod a few days ago and already having mechanical problems with it. Just have been getting depressed about the way it has effected my BG levels and other things. Thanks, you guys (gals) for letting me vent a bit.

Venting to us is good…we all understand. We all walk in the same shoes. Hope that you have better days, and know that you always have a place and friends to lean on.

XX Robyn.

I totally agree I mean it is like what are we going to dodge today ? what am I going to eat and what roller coaster am I going to ride today ? everyday is a battle for us and my grandma used to say "Be kind to everyone because you dont know what kind of battle they are fighting . So I totally understand what you are saying .

I am right there with you… I am coming up on 9 years with this in a month, and I am in a super huge funk right now. I am just tired… tired of the constant poking, tired of the constant struggle to get my #'s where I want, tired of dealing with insurance companies who will do anything and everything not to pay. Tired of PMS throwing my #'s all over the place.

I’m tired of dealing with my Animas rep who won’t call me back. I’m tired of my insurance company telling me one thing, and then doing something completely different (and never fixing the issue, of course). I’m tired of everything seeming like it is just so much more WORK than it has to be.

I want a vacation. I am not depressed in general, but there are times, like now, when I wish I could just catch a break and take some time off from it all.

Every day I have to remind myself that I am not a number and that not liking what I see on the meter is not a direct reflection. It’s hard.

oh yeah, don’t even get me started on the insurance, doctors and pharmacies…what a hassle! i am grateful. i finally found a good doctor (she’s not even a doctor-shes a diabetic educator) who seems to go the extra mile. she calls my other doctors to get all the info, she makes sure all the insurance paperwork is done and approved. she even reassures me when i feel depressed about how poorly i’m doing. she says that every diabetic goes through it and its not an exact science and don’t feel guilty! i love her! she’s more like my therapist lol!! but up until now i dreaded going to the doc. i wish everyone could have a doctor like her.

yeah, i want that vacation too. lets go on a anti-diabetes cruise, even for just a week, and not have to deal with this haunting disease! Bahamas? whatayasay? hahah! if only!

Hi Lydia!

I just had to wipe away the tears from reading your touching blog post. I feel you! I am only a year and a half in, but I feel you on the roller coaster thing. When I was first diagnosed, so many people (who were not T1) told me it would become routine, normal, I’d get used to it, I’d get a grip on it…blah, blah, blah…they have NO idea! It gets “easier” only in a slight way with the learning…but never really with the implementation of daily management.

Yesterday I was feeling really in denial…like, this can’t possibly be my life. And…here you are 10 years into it, still struggling. And I think most people are. Like you said, it’s not an exact science. It’s exhausting. It makes me wanna eat the same exact thing everyday and not do anything differently (which is not only impossible, but not how I wanna live) in order to control it and not have as many ups and downs. But when I get tired, I cut down to this monotonous routine…to try to reign it in.

Sometimes, I tell myself there is NO way I wanna live the rest of my life like this. I think we keep going because we hope it might get better?

your line : " sometimes even love can’t revive a tired soul"…beautifully painful…I feel you.

I hope you find tudiabetes to be as wonderfully supportive as I do. I really don’t know how I’d get through without it sometimes. :slight_smile: So nice to know you’re not alone.

Don’t ever feel guilty venting here. You see what has happened…you have created the op for everyone else to whine a bit. Just keep reading and writing. I always expect some new bit of advice to present itself that makes this adventure just a little easier.

i feel you!!! just the other day i shot up tp 420 (failed pod site) and i just broke down when my boyfriend got home…you just feel that sometimes you can’t do it anymore…
then the hard-headed independent part of you breaks thru and says "you can conquer this battle!! hang in there!! be strong!!"
so then you wake up and do it all over again and learn more about your body each and every day

I have a fantasy that Jenny Ruhl runs a Diabetic Bed and Breakfast (somewhere fabulous as this is a fantasy, after all) where she walks us through our diabetic routines, helping us solve our personal diabetic puzzles and serves us delicious diabetic friendly food.

this is the whole point of being here, allowing us to vent, feel angry, depressed but know that someone actually cares cuz we all can understand what your day can be like. I feel trapped between this depression and the one from being in meopause and suffering hot flashes where I feel I’ve already gone to hell. You are so right. There is NOTHING amusing about this. Take care. God Bless.

im a type 2 but I feel your pain. We all hit those days like nothing goes right and getting it out is good. This is a good outlet for those times. I have been in that crazy roller coaster, some days it controls you and somedays you control it. Somedays you dont even want to think about controlling it or being in the roller coaster. When I feel good at night, I just dont want to go to bed sometimes because you feel good at the moment and the next days who knows what it will bring. Take care

I know exactly what you mean and it brought tears to my eyes to read it, seriously. My levels go from way up high to so low and I have no idea how to control them. Then when I get them to normal again, I’m still feeling sick and headachey. It doesn;t seem fair. Sometimes I feel guilty for feeling so down about it. I tell myself, just get on with it. But venting really helps. Just to let you know, lots of people here are here to support you and each other!

BOW WOW! I hear you. You have friends here and we are here for you.

Take courage in the fact that we are all riding the same roller coaster with you…you are not alone.

Hi there! I am Ann and I am 39 yrs old. Please, please reach out to us and do not let diabetes get the best of you!!! It is an every day battle but please’ vent here and do not give up!!! Your life is so precious! I REALLY feel your pain, frustrations, ups and downs, confusion, depression, anger, rage etc, etc,etc… Every day tasks that other people take for granted it is really hard for us and the truth is: nothing stops because we do not
feel well. I have a four years old boy and it is challenging for me too keep my health in optimal conditions so he does not have to go through the shocking experience of finding mommy unresponsive at any given moment. My husband and my family have a watch program where they call me through the day and they expect me to call them back at different times to tell them how I am doing. It is not easy having this condition. I have being a diabetic for 25 five years. Full blown juvenile diabetes type 1 diagnosed at 14 years old with not known family member with the disease. Tell me about all those emotions plus adolescence and all the rebelliousness that comes with being that age. Needless to say, I did not wanted to accept my diabetes, not following the doctors’ orders and putting my family through hell due to my chosen path of self-destruction for many years. It did not help either that under my type 1 juvenile diabetes I was also diagnosed with being “A Brittle Diabetic”. I was already having a hard time understanding diabetes so when the pediatric endocrinologist expert in this kind of diabetes explained to me and my family: “I just said: heck what the heck is there to do for me if no matter how much we do and follow directions anything and everything causes my BG to go out of control”…

For many years I keep on that road to destruction even using keto-acidosis and bulimia as a way to keep a fashion model kind of weigh. That was awful, nights of constant going to pee or vomit because of the keto and then going on with my life the very next day at school and when I was in college. Again, I chose a path to self destruction. I really put my parents and siblings through a lot. The worst case of Keto-acidosis (one of many) I was in my early 20’s started on keto-acidosis for 2 days; didn’t treated so when my parents took me to the hospital my BG was 900 with 3+ ketenes and that night the doctors told my parents I had only 5% chance to survive the night and if I made it, it would have been a miracle… And it was; I think God had better plans for me!!! I spent 1 week in the intensive care unit and 2 months in the hospital. At that time for the team of doctor to discharge me; I had to have 3 consecutive BG readings within normal range. Well, you would think me been in the hospital under strict diet and care that would be something pretty easy to achieve: wrong for five days every day around the clock they kept trying to get those 3 “normal readings” without success. So being over 21 yrs old, I singed off the hospital papers and told the doctors I had to go back to life away from that controlled environment where they could not regulate my Bg’s. I could not stay there for the rest of my life. Yes, I went back to the same rebellious attitude of being angry and depressed and most of the time spending too much time feeling sorry about myself and my life. Due to the way I chose to live my life my left kidney filtration so we need to keep a close eye on it ( I take medicine for that) and any other unpleasant things as well.

I am glad I did not get my way and alive still; God really wanted me to keep on living! Finally at 32 I stop fighting and got married. My husband helped me to walk the path I have never walked before: to take it a day at a time, just a day at a time. I re-learned all the things I never wanted to follow to be a healthier me. It has not been easy and 5 yrs ago when I had to get and insulin pump due to my pregnancy I was really reluctant to have “that ting” connected to me!!! How would I wear dresses, bathing suits etc…? You know; all those vanity things that we think about and rank at the top of our priorities before our own health. I forgot to mention: at the time I had to inject myself 6 times a day prior and test 14 times a day during my pregnancy. So I got the pump, still testing 14 times a day, 3+ laser surgeries due to the stress the baby put on me I developed retinopathy, lots of difficulties up to bed rest and by the end I developed preeclampsia. It was ALL WORTH IT, I HAD A BEAUTIFUL NON DIABETIC BABY BOY!!! In my case I learned the best lesson of all: I WANTED TO LIVE, THERE IS NO WAY I AM GOING TO MISS ON THIS BEAUTIFUL LIFFE!!! WHERE I WAS BEFORE, WHERE I HAVE PUT MYSELF THROUGH WAS HELL ON EARTH AND IF I SURVIVED THAT THIS WAS GOING TO BE A PIECE OF CAKE, SORT OF…

7 years have passed and I am not going to lie to you, everyday for me is a struggle. For example list night; my bg was 105 so I had a light activia yogurt with some almonds and a 8 oz cup of decaf coffee with splenda and non dairy creamer about 9 pm by 10:30pm my bg 306 and of course I have to bolus for that knowing that I woukd crash in the morning but it needed to be done. Yeap, you guess it: my hubby as always test my Bg first thing in the morning when I am acting different or too sleepy so my bg at 7am this morning was 31. Yes and deal with that 4 or 5 times a day every single day. No matter how well controlled I am, no matter how calm and rested I am this spikes and lows happen and are part of my life. I get 300 test strips every month cause a test 10 times a day. I do have the CGN from Medtronic but my blood sugars fluctuates some much within an hour that it seems the CGM can not handle it. Medtronic technical people asked me to not test or calibrate so often, not doing tat won me trip to the emergency room. When I talked to Medtronic again they kind of admit that maybe the CGM can not keep up with my constant rapid changing BGs so I test 10 times a day and still have a good control of an H1AC of 6.3 on my last endocrinologist appointment which was 2 weeks ago. Now that I am finishing this I have to tell you my latest two BG’s: at 9am before eating breakfast my Bg was 130(ate just 1 cup of regular cheerios and 6 oz of 1%milk) but as always keep doing stuff cleaning the kitchen etc and 40 min later after breakfast remembered I did not bolus for the breakfast and decaf coffee so I based my bolus on the amount of carbs taken and did not check the Bg just went ahead and bolus. Well while writing this, you guess right; have started to smell fruity so when that happens it means HIGH BG so I tested my Bg and it is 428, saliva very thick and the need to pee. I just bolus the necessary amount of insulin and I will check within and hour so that most likely my Bg is going to gone down only 20 points so this is going to be a slow process until I am back to a normal range. For those who are reading this and are saying well that is why there is a CGM for, I wish I could use but it has not worked for me trust me I say I wish I could use it!

Well, I hope you have a wonderful day and hope all of us here could be your stone/anchor when you need it and vice versa!!!

Ann =D

Wow, Ann! Your story is encouraging, to say the least. Even in dealing with keto and retinopathy you still keep going. I commend you. This has really inspired me to write some of my own memories of growing up with a T1D dad (check out my next blog) Growing up watching him go through it and where he is now is encouraging and inspiring but at the very same time scary and insights fear in me. Am I strong enough to deal with these things too? But your family is right…it’s day to day, one blood testing to the next. Which is why diabetes is such a two-headed monster. Hope and helplessness all in one.

Lydia,

Wow; was really touched by your post; I was just diagnosed as T1 this past March and have been feeling overwhelmed; frustrated; confused… you name it. Reading your post and the other comments helps me to realize that i am not alone on this roller coaster. I hate that people assume that because i’m over 50 that I’m type 2 and if i had only taken better care of myself I wouldn’t be in this situation. Even some of the nurses at the hospital when i was admitted due to DKA made that assumption and tried to encourage me that if I eat better and get more exercise this will all go away. My doctor at my last visit stated it very clearly, “If you don’t take insulin, you will die.” Talk about a reality check. I too try to take it one day at a time, but i hate how my high #s make me feel like a failure; seems like that anticipation is adding even more stress to my already stressful life.

Venting really does help and it’s wonderful to have all of you here who understand so completely what I’m going through.

I know! I hate it when people assume you have diabetes because you don’t take care of yourself! Hang in there- it can be frustrating. and venting really does help it seems…I just started on TuD and I already feel a little less depressed knowing that I’m not the only one that struggles. Wish you the best, Melissa!