I am normally not a downer with type one but I am feeling really pist off and tired. I work so hard to be on top of my diabetes but it is relentless and I am tired. No one truly understands And I am tired of the sky rocketing sugars out of no where. Sorry for the negative post but I am feeling really down and alone and any support and motivating words are appreciated.
hi @Mlp1124 don’t be sorry. the deal is that diabetes is a life sentence with no chance of parole. depending on what’s happening in my life and in the world, I (and everyone) can feel overwhelmed at points. so what. it means you aren’t superman,
i usually do ok under pressure and with of 42 years of successfully treating my diabetes (I can say that because i am not dead) but when bad happens at work at the same time as bad at home and bad with my son AND I get a new or frustrating problem with diabetes… well it might be time to break something.
it happens. for example I am in a pressure cooker at work, and my wife is all angry because the summer is ending and our lake is going to close, and my son is having a hard time adjusting to another bout of “distance learning” (euphemism for online 5th grade with no recess and no friends) and my last retina exam showed that I got a weak blood thing in my right eye and need laser… I darned near lost it.
If I frame my world as 5,114 more infusion set changes, 798 more vials of insulin, 76,702 more finger pricks, and then I die, well I might not want to live anymore. If I take a moment and realize where I was 42 or 52 years ago, the things I thought were important… I mean REALLY important, and the things I think are important now, the things i THOUGHT I was planning versus the way they came out, and both the crushing, bitter sadness and unbelievable joy, well then I figure I may want to stick around and see what happens next.
so it’s not the endless drudgery of diabetes, but the potentials of life and of the things that I hold dear, that puts diabetes where it should be: a background and literal pain in my ass, Yes, it’s my personal anchor to drag, but I am willing and able to do so because of the feelings and people that I cherish and will not turn my back on… myself included. cheers!
Hi @Mlp1124. I’m glad you wrote in. I’m sure everyone on the forum can relate to what you’re going through in some way and to some degree. . I commend you for doing the work and taking such good care of yourself: sometimes people blow it off - perhaps in denial - and that makes things much, much worse.
How long have you had diabetes and what do you use to manage it? I ask because people who are newer may not realize that their insulin may need to be tweaked now and then. With a pump a small increase to a basal rate or rates might be what’s needed, or a change in the carb ratio. With injections a change in the amount of basal or mealtime insulin - or even the - type - could be what you need. I hope you have a good doctor you trust. If you’re not experienced and comfortable making changes on your own check in with them. My doctor is doing appointments by phone due to COVID so that should be an option.
This is going to sound counter-intuitive, and I am not trying to be insensitive, but I know when I’m having a hard time I have to perhaps force myself to relax and do something enjoyable. Right now I’m finishing a piece of needlework I started last year😳 - one anniversary late for my friends but… Pick up a hobby or try something new, or whatever you can to help relax. Sometimes it works wonders for me.
Please keep us posted on how you’re doing.
As a parent of a T1D I have immense compassion for what you are going through and am in awe of what you have to do every single day. I can not say I understand what you are feeling since I am not in your shoes, but I know it can be exhausting and frustrating to manage sugars. Please hang in there and hold on tight to the things that motivate you to keep Going
If I were you I just do what I can do, do not care too much about daily blood sugar, think about those people with decades of living with T1D, they did not have high tech tools what we are having now and they must have had a lot of time with uncontrolled blood sugar and they are still living a happy life now… Even for the people without T1D there are still always some issues making them down and frustrated. Life will be going on regardless what is happening. And for sure there will be more better tools coming out for easy managing T1D life or even a cure in near future.
Thank you for this. I appreciate the response and understanding. I am usually super, super tolerant but as you mentioned between summer ending, my daughter needing to be homeschooled and a two year old I am just exhausted. I think this is also coming from my sugars being shitty the past two days. Idk what’s going on but I hate when I feel out of control of this. There’s time where I swear insulin doesn’t even phase my sugars and others were I am really receptive and need such a low dose. Just frustrating.
Thank you for the response. I am hoping tech and everything continues to get better. I am so thankful we are even at where we are with type one but it still sucks
Thanks so much for the kind words and response. I give you tons of credit for being a parent of this exhausting relentless condition.
Thanks for the response. Yes I totally know everyone on hear can relate to some degree. I was just at a family get together yesterday and while everyone else is eating drinking and doing whatever my sugars are skyrocketing even though I barely ate and continued to take insulin. I’ve been type one for 8 years. It was a huge shock for me, as I was 23 when I was diagnosed and it rocked my world as you could imagine. I am on injections and a cgm. I choose to not use a pump because I am vain and really keep my diagnosis to myself. Just my preference. I don’t like people to view me differently. I feel there is still a really real stigma and I’d prefer not to always have to deal with it. I’ll continue to do what I do, I get stressed when I feel out of control which is how I’ve felt the past two days. Taken a lot of insulin and sugars haven’t even moved. Makes no sense to me.
I use a pump but when I can’t get my numbers down I switch to injections (and drink plenty of water to wash out any ketones). I’ve found that if even that doesn’t work out means I have an infection brewing. Each time it was something internal - no cuts or scratches to be found - and the numbers were my first and sometimes only sign: I’ve gone to the doctor and found I had a UTI, with absolutely no pain, discomfort or burning, which was a surprise to them. The first time this happened I went to my primary care doctor’s office and told them “I can’t get my blood sugars down no matter how much insulin I take - I think I have an infection.” Told them I felt fine otherwise and couldn’t find any cuts or things of that nature. The PA I saw said “You diabetics knew your own bodies” and have me a cup to pee in, I guess as a start. No need for further tests - I had a UTI, and once I started on antibiotics my numbers started to normalize.
A few other times it was dental - I actuality had some small pain but ignored it until it was too late and I needed a root canal (I’ve had 4).
If you’re wondering why I saw my PCP rather than my endo - I had gone to that endo before with a suspected infection and he said I needed to see my primary care doctor.
So check in with your dentist, or your endo/primary care doctor to rule out anything underlying.
Hi Mlp1124, Sorry to hear you are down, and just exhausted by your experience with T1D. My 16 year old son was diagnosed about a year ago, and we have been up and down on the roller coaster with him, but of course we don’t really know how it is to be the one with T1D.
Take a bit of time to do something nice for yourself. Nature can be very restorative, and a walk around the block or in a park or woods feels good. Sometimes my son is in control, with nice stable numbers, and sometimes he is on a roller coaster, with unexplained highs, and scary lows. He is doing a great job of managing it, and is getting better and better with it. He uses a CGM and since he went on the pump, all of us can get a better night’s sleep. I had diabetes in my family, so I have probably passed it on to him, even though I am not diabetic.I feel bad about that, but I know the only way is forward, and with a positive outlook, and to do the best I can to assist him when he is in need. I am sure there are a lot of people in your life who care about you. Sometimes opening up to your friends can reveal more compassion than you thought was available.
Its OK to feel down sometimes, and T1D is a tough condition to manage. There are so many out there who are T1D and who can offer you much better advice, but I just wanted to chime in to let you know that your message reached a lot of us, and we all hope you are feeling better.
Michelle, been in your shoes exactly. so sorry, i’m not a long timer with T1, but i’m dam determined, i’ve turned some really good corners by pushing off that anger about “highs out of no where”. I am now in about phase 4 of diet experiments and taking shots right before i take the first bite then when i know i’m eating high fat content I split my shots in two, one at first bite then later when i see its going to start boogying over 150. I also implement plant diet meals eating fake meat (surprisingly good) about 3 times per week, on these days I rarely go over 150 and by end of day have barely injected 3 units for the day, its crazy happy adding smiles to the face when that happens. then days i can’t stand it and need real meat with fat I know precisely how that fat is going to making me go high hang long so I take a second half dose for that…i’m experimenting with Keto & co food products that is also crazy good without the high impact. I am just sharing my experience I know everyone is so different, but my determination to not let it beat me is insane so i say if there is a will theres a way then i get to work again experimenting with answers i can eat and be happy…hang in there…
Thank you very much for the kind and encouraging words. Your son is lucky to have a supportive and invested parent (s). I am sorry your family has to deal with this, but glad things seem to be improving and getting more stable. It is certainly a journey. I hope your son is doing okay emotionally. It is truly a tough, tough condition and I could not imagine being diagnosed at 16. He must be very, very strong. Sending positive vibes and thoughts.
Thanks so much. I have been working with different diets too. Sometimes my body is just simply wonky. I am grateful for it though. I will continue to press on and take great care of myself to the best of my ability. Thanks for the response and encouragement.
@Mlp1124 since you’re trying different diets I wanted to share that I’ve had great success eating Mediterranean style. I admit I’ve fallen off the wagon a bit lately but for me I find there’s a less drastic effect on my numbers, and I was losing some weight! And to my great and happy surprise I find myself naturally gravitating to those foods! I hope you find something that works for you even if it’s not that style.
Also, have you ever studied the glycemic index?
“The glycemic index (or GI) is a ranking of carbohydrates on a scale from 0 to 100 according to the extent to which they raise blood sugar (glucose) levels after eating. Foods with a high GI are those which are rapidly digested, absorbed and metabolised and result in marked fluctuations in blood sugar (glucose) levels. Low GI carbohydrates – the ones that produce smaller fluctuations in your blood glucose and insulin levels – is one of the secrets to long-term health, reducing your risk of type 2 diabetes and heart disease. It is also one of the keys to maintaining weight loss.”
The quote above was taken from this website
and the and written by the University of Sydney. You may want to look into GI - there are of course lots of sources to choose from.
sometimes i have to fall in a heap screaming before i get back up…you too sound like a real warrior…
Thank you for the kind words.
Thank you. I actually took your advice on a prior post re my weight and I followed the Mediterranean for quite some time and enjoyed it very much. Didn’t do anything for my weight somehow but I was feeling really healthy.
I understand what you are saying regarding situations where everyone else lives their eating lives but you have consequences. I’m 54 w/12 years of T1d (had it longer - that’s when I was finally correctly diagnosed). I’ve found great success eating healthy and extremely limiting carbs. I don’t do keto because of all the fat - although I end up eating a lot of fats - as healthy as I can. I wear a G6 because lows can be an issue. I’ve changed my drinking habits as well (no more beer:( I encourage you to get Dr. Richard Bernstein’s book on T1D. I went from years of A1C in the 8s, trending higher, to low 6s - basically overnight. My BG rarely soars to 200!
And you have to find what mind-set you are comfortable with and accept that you, like all other T1ds, have got it tougher than others in that aspect of life.
Hang in there. There are better days ahead. And borrow that book!
Great response Joe!! As I have told Michelle, I have had T1D for 68 years and have been through what she is feeling. But, even after the “cheating” on my diet I have done, the missed bolus’s, etc. I am 72 years old and living life as best as I can and we can’t do anymore than that. Be thankful you are still here and able to look forward to exciting, new treatment options.