Struggling

ko4
By ko4 Latest Reply 2013-09-17 17:39:54 -0500
Started 2013-08-23 14:05:04 -0500

Hi everyone, I'm new to this so just wondered if anyone can give me any advice.. I've been type 1 diabetic for 11 years now, I was diagnosed when I was 10yrs old and had excellent control until I was about 16. My diabetic team changed my insulin due to a bit of a rebel stage I went through, my hba1c results were really high. Things changed when I turned 18 and started to feel terrible, I was constantly ill and had no energy at all, I have to give up my two jobs, and at the time doctors thought I had developed another auto immune disease called lupus. Docs were not willing to give me a short course of steroids due to my diabetes so I just had to let my body get better by itself. Whilst at home I monitored by BG levels about 15-20times a day and eventually managed to return to work 8months later. I felt great but was living off no carbs and sipping on apple juice to keep my levels steady, whilst still doing 4injections aday. Three years later I'm really struggling again, I get angry with my body for feeling so rubbish. If I have a meal, I have to take lots of insulin, then end up having a hypo. I can't bear this feeling off being unstable anymore and I'm terrified something's going to happen. Im already in the early stages of kidney disease as I'm leaking protein in my urine. As my BG are so high ( usual readings about 16-17) every time I try to get them settled (5-7) I feel even worse, I get really hot, my headaches are terrible and my body aches. Does anyone have any advice that can help me get out of this rut I'm stuck in? X


16 replies

Type1Lou
Type1Lou 2013-09-17 17:39:54 -0500 Report

Accurate carb counting was the key for me. I've had diabetes for 37 years but have only been pumping for the last 2 and am sorry I waited so long to pump, but I can certainly understand your reluctance. Using the proper carb to insulin ratio is also a key to gaining control. I'm considerably older than you and suspect my insulin sensitivity is higher since my ratios run from 25 grams of carb/unit of Novolog earlier in the day to 23 grams/unit from late afternoon to midnight. I limit myself to no more than 120 grams of total carb per day and have had very few hypo episodes since starting on the pump. My last A1c was 7.0 and I'm working to get it back into the 6's. I did not develop my Type 1 until I was 27 years old and am grateful I did not have to deal with it, like you did, as a child. You can master this…in fact, it's essential that you do so to prevent any further complications. It sounds like you're taking steps in the right direction. I'm wishing you well!

ElectricSoul
ElectricSoul 2013-09-01 16:26:45 -0500 Report

I hope and pray. What have the doctors say to do? I honestly don't know your whole story but I hope you are taking care of yourself ):

ko4
ko4 2013-08-31 11:58:41 -0500 Report

Hi everyone, sorry I've not been on in a few days! Been busy. Had a great chat with my diabetic nurse on Thursday, told her I was struggling both emotionally and physically - to cut a long story short, the bad news my hba1c result is 11.2%, I knew it would be high, but not that high. But lots of good news- they've increased my lantus dose. I had a chat with the dietician who's suggested I attend regular carb counting group sessions, and also recommended a brill app called carbs & cals which shows pics and tells you how much carbs are in each portion size. I've been used to taking 1unit per 10g of carbs when I actually need 2units per 10g. We talked about the pump but I honestly don't think I'd feel comfortable using it, I will do some more research and have a serious think though! I'm also going to visit my nurse weekly now for a few months, and I WILL be attending the group discussion sessions held monthly, just to get a bit of support from other diabetics. I'm Feeling very positive about this now, cant wait for the day when i feel healthy -no aches, pains or ketones!!!! determined to get my hba1c down to at least 7% by Christmas! Wish me luck :) x

Angie Type 1
Angie Type 1 2013-08-27 06:37:41 -0500 Report

Welcome to Diabetic Connect. Have you spoken with your docs about the insulin pump. I eat often and am pretty sensitive so this was wonderful for me. The control isn't always perfect but I find "correcting highs and preventing low bs's" easier. It almost sounds like your carb to insulin ratio is off since you crash hours after a meal (after taking lots of insulin) ???? Be careful about the carbs and fats or the lack of when you notice the severe hypo's after the meal. Sounds to me(not a doctor) just my thoughts is that the insulin and carbs aren't matching up. Do you take the shot right before you eat?

ko4
ko4 2013-08-26 20:18:57 -0500 Report

Thanks for all your messages :) I take lantus too and then novo rapid throughout the day. My lantus needs increasing though as i know I'm not taking enough units. My diabetic team are meant to see me every month but I haven't seen them since February, so I've just been going to see my GP. I have (eventually) got an appointment to see diabetic team on thurs so think I just need to be honest and tell them how much I'm struggling. Don't get me wrong, they've offered support and group sessions to discuss the emotional side of diabetes but I've always turned it down. I guess I'm just embarrassed of the fact I can't control my body. Also I had issues with food and my weight, eating lots of carbs then not taking injections. I think I need to go back and learn the basics like when I first got diagnosed and get back into the routine of carb counting and eating better. X

sandyfrazzini
sandyfrazzini 2013-08-26 11:05:51 -0500 Report

Hi ko4, I am also at a point where I am really struggling too, I reached out and got some good advice on DC. I have been a Type 1 for 31 years (diagosed at 11) and on the insulin pump for 7-8 years. i do really well for a while and then I just don't care and I quit testing and quit counting carbs and such things. Currently I am trying to get myself back on track. Just start trying to change 1 or 2 things at a time and see how it works. I really do believe that you would bebefit greatly from an insulin pump, it really does offer more flexibility. Good luck to you.

eristar
eristar 2013-08-26 06:02:47 -0500 Report

Just want to say welcome to our group, and I hope you start to feeling better soon. Each of us struggles with diabetes in their own way, (mine is depression, for which I am being treated and finally feel human again!) and it's not easy, but please hang in there and keep us posted on your progress!

AuntieBear
AuntieBear 2013-08-25 05:41:41 -0500 Report

What type of insulin are you on? I am on Lantus and it keeps my numbers pretty stable. You can't go carb free because your body needs carbs for energy. The tricky thing about carbs is to figure out which carbs are good and which carbs are bad and how many are the right amount for your specific needs. The most important thing is to NEVER give up.

jennifer.edge@optusnet.com.au
jennifer.edge@optusnet.com.au 2013-08-24 20:43:32 -0500 Report

Are you able to change doctors and have you been reviewed by an endocrinologist. ? I'm writing this from an Aitralian perspectivebut that's what I would be doing Do you have any other people in your support team like an educator and dietitian.If anyone can ''translate'' into a US management plan please feel free to do so)THERE ARE RESOURCES OUT THERE FOR YOU, IT'S ALL ABOUT FINDING THEM. fIRST FIND YOURSELF ANOTHER DOCTOR!

CassBen
CassBen 2013-08-23 22:59:19 -0500 Report

This group was a good place to start. I think if I was you I would look into an "in person" support group in your area. Your health care team might know of one, or you can check with your local hospital. I have to say, one of the biggest things that helped me was a Certified Diabetes Educator (CDE) who not only helped me with the diabetes nitty-gritty, but also the emotional stuff that goes along with it. Turns out, once I dealt with the emotional side of diabetes (that I wasn't even aware of), all the technical aspects followed. I also worked with a nutritionist. I did this for about 6 months, but it really helped, It is never a perfect condition my friend, we all just do the best we can, and how we approach it can make all the difference. Don't be so hard on yourself!

silvie mae
silvie mae 2013-08-23 19:38:17 -0500 Report

Well, maybe you could talk to your health care team about your desire to get on track. Ask your doc about pump therapy and maybe the cgm. I know it has made a world of difference for me in my ability to keep things managed. One thing pump therapy with constant glucose monitoring does, is allow you more flexibility.

ko4
ko4 2013-08-23 18:27:13 -0500 Report

Thanks :) I work shifts so have no real routine which isn't helping. I have arranged a week of work and an appointment with clinic next week. I need to change, it's a manageable condition so I should be grateful I don't have anything which I can't control. I'm grateful for any advice or comments so thank you! :) x

zwee123
zwee123 2013-08-23 17:27:13 -0500 Report

The bad feelings your getting when your in that lower (yet normal range) is probably because your body is used to being high. You just have to fight the symptoms until your body gets accustomed to being back in the normal range! Stay strong!

ko4
ko4 2013-08-23 17:27:12 -0500 Report

They only suggested the pump when I was younger. To be honest, I don't get much support from my diabetic team, and I don't blame them. I don't look after myself properly, it's just so hard sometimes…im determined to get my sugars controlled, i just don't know how or where to start! X