Is THIS my new normal?

Type 1 and LADA New to Type 1 Diabetes
1

It's such a relief to have you all to send this message in a bottle out to...

It's been 3 and a half months since my dx with T1. I went for my first (since dx) A1C today and am anxiously awaiting the results. This first little milestone has really hit me hard. THIS IS REAL...THIS IS FOREVER. My heart is heavy. It hadn’t sunk in until now. I am a diabetic. :-(

Up until now I’ve been focusing so hard on reading, educating myself, pre-planning meals and restocking the pantry and freezer that I haven’t taken any time to really just "sit with this".

My question is...how long before I feel like "my old self"? I'm holding on to the hope that once I get adjusted- mentally and physically to my T1 "situation" that I will feel good again.

I've gone thru all the strange new feelings of adjusting to life on insulin...hypers and hypos.

I've worked really really hard at tight control - my goal was to bring my A1C down from 13 to 5.5. I've done well...and have brought my average bg from the 350's to a consistent 80-110 . Insulin is good stuff- but it makes me feel like crap!

I'm abiding by really strict lifestyle changes, carb counting and light exercise. With the low carbs- I’ve actually lost too much weight- and am wondering if that's part of why I don’t feel great?

I've gone thru phases where I feel hypo when I'm not- I've gone thru feeling hypo when I am, and now I have hypos in the 40's and feel perfectly fine.

For the last 20 days I have a headache 24 hours a day that waxes and wanes but is always there- Overall I don’t feel good-not horrible but always feel "off" with weird physical sensations thru out the day. And never never enough energy. I am used to leaping tall buildings and doing anything and everything ( backpacked across Australia and Asia for 4 months - right before my dx!) Now I can even do the dishes with out needing a "break".

I specifically want to hear from the T1's out there- do things get better? Will I feel like my old self again?

2

My guess (and this is just my guess) is that your body was used to being 350 or so, and now you’re at 100. Your body is not used to that. Basically, your body thinks your blood sugars are low, and you’re feeling some of the symptoms. Once it acclimates to having blood sugars in range, you should feel better. However, I guess it depends on how long it’s been since your sugars started being in range. (I don’t remember how long it took mine, but I was a little kid, so I bounced back quickly.) If you’ve had really good sugars for a couple of months, then it might be something else, but, if it’s just been a week or so, I’d say give it a month and see how you feel.

And, hey, don’t feel too bad. Sure, you’re diabetic, but at least you don’t have 3 heads and ten arms (I assume). You’ll get used to it.

3

Also, are you rollercoastering (word?)? Are you rapidly changing from high to low? That’s not very healthy, and, if you’re not used to it, it can be really hard on you. (Even if you’re used to it, it’s still fairly hard on your body.)

4

Yes, yes, yes! You will feel like your old self again, only with a lot of new tasks! Something is not working for you, it sounds like. It sometimes does take time to settle into a routine of dosing, chosen diet and exercise, but it sounds like you aren’t there yet. There is no reason why you should feel so crappy all the time! When things are straightened out you will definitely start to feel more like your old self (maybe not the tall building thing!). If you are losing too much weight, that would certainly account for your not feeling well. Remember that it isn’t a contest, isn’t a marathon, isn’t about perfection. If your lifestyle changes are so strict that you are miserable emotionally and not well physically then you are throwing out the baby with the bath water (whatever that means!). Yes, we all want to avoid complications down the road, but we also want to enjoy the walk! Perhaps modify your regimen to something that helps you maintain a healthy weight and feel a bit better? Just my opinion.

5

Well, I am not T1 so I hope it is OK that I respond but I AM new - just like you. I go for my first A1C (not counting the Diagnosis one which was 9.2) next week. It will be 3 months on Met for me at the end of next week. I was actually diagnosed (had a FBG of 205) on Feb 26 so it about 3 1/2 months for me too.

Even though I don’t have hypo now (but I did before I was diagnosed - I just didn’t know what they were) - I totally get what you are saying about not feeling NORMAL. Is this my new NORMAL? You should see some of my posts from about 3 months ago on here. Exactly that was one of my questions - Am I going to feel like this for the rest of my life?

I felt like total and utter crap around when I was diagnosed and for several weeks after. I swear I was fine one minute (although I never felt good) and than I would start balling my eyes out the next and I didn’t know why. It was a mess. I had no strength or energy. Ended up in urgent care dehydrated (that was the worse - I couldn’t walk across a room without wanting to lay down on the floor). I was afraid to eat anything. That was the worse for me - I was a nervous wreck.

It took several weeks on the Met before I started feeling better. The Metformin worked wonders on me. It stablized my BG in a matter of days - I was surprised at this because I thought it was going to take longer. The diet part was huge struggle because I didn’t understand the carb/sugar thing - I was lucky to find a free diabetes class which made that light bulb go over my head. I finally understood that diet part. But it was pain in the butt getting there.

Like you I have lost a lot of weight because of the portioning and the low carb - how could I not I mean I am probably eating 1/2 of what I ate before! My body has a fast metbolism I think because any time I have gone on a “diet” I lose weight fast. And this time I haven’t really been exercising either(I have hardly any energy how can I!) and it still melted right off (maybe it might be nervousness too!) I weight 130 lbs at diagnosis (I am 5’4") and I now weigh 110 and I don’t want to lose any more! I was likeing my 130 because I was starting to get a “bootay” (hehe - I have always had a flat butt) and now it is gone and I look like a board! I hate that. Ugh (I am starting on some exercises - if I can’t gain weight in my butt than I will have to gain muscles down there!). I wish that the weight I lost could have been mostly on my stomach and not the other areas - grrr…

I also feel the same way you do about the energy - I have practically none. I used to “fly” all over the place - not backpacking but I rarely got tired physically. Now, it is like you - I do one little thing and I need a break! I don’t like it. I am thinking that is the fact that I can’t eat much carbs is why I have no energy. I don’t think it is my weight loss because I once weighed 100 pounds about 17 years ago and I had TONS of energy. So, at least, for me it is not that - maybe it is D AND getting old that is doing it.

You are doing great by keeping your numbers like that. Mine are normally like that too now. But that doesn’t mean I feel great because they are in the “normal” range which is what I was hoping for. Some days I feel so tired and other I feel more “like my old self” - but never completely.

Coming to terms with this is the hardest thing ever. I don’t think the FOREVER thing is totally sunken in for me. I am still mad about it. Not as depressed any more. Although I think I have come to terms with the fact that I have this - I still am not happy about the other aspects of my life this is affecting - the diet part will always have issues. I don’t thing they will ever go away.

I often have some weird physical sensations too - they come and go. It is mostly feel like a vibrating or pulsating in certain parts of my body (usually my hands) - feels like the blood rushing through it or something. It lasts a few seconds than goes away. I think it started a few months before my diagnosiss. I don’t know what it is but I don’t like it.

I think your A1C test will be good if you have been keeping those good numbers.

I don’t know about the insulin but I do remember reading several posts by people who said that the insulin made a big difference in how they felt - it made them feel great and normal again. Maybe you need a different kind or something needs to be adjusted? I am sure the many T1 will have advice for you on that.

I wrote a analogy blog yesterday about how I feel about my D - I still have to post it up on here but I think it might be a common thing with new people like ourselves - to feel that sinking feeling in our hearts. I still feel it every once and a while. I am also facing other health problems which could potential be worse than the D - hopefully they will not. But I will always look back Feb 2010 as the worse month ever for me (so far). And the age 40, well, that is the year my body fell apart.

Just want you to know - that I feel like you do to - it gets better with each day and some days I take a step back but at least it is not as horrible as those first few weeks. Those were the worst.

Keep us posted on your new A1C - you will have reason to celebrate I am sure! :slight_smile:

6

…yep there’s the bright side :slight_smile: Hope you’re right and it will all even out. Good BG since the around first week in March a few highs here and there- but over all ave is 107. So I bet you’re right just have to adjust…hard to be patient. Deep breaths

7

not really “rollercoastering”…as you put it. I have had a few days where I crash repeadetedly but then dont shoot back hight unless I over treat-

8

ahh…wise words…I have a lot to master above and beyond my BG. Pesky perfectionism.
I am generally not a “type A” personality type…but when I’m scared I think I over react. So reassuring to hear that things will get better- I was starting to think that everyone with D just felt icky all the time. Thank you Zoe

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seems to me, you’re trying too hard , to fast… which is normal…
too Little carbs, Too tight of BG control and aniexity level and Being paranoid have got to be in the equation as well…

Having 5.5;s is great, only How you are getting them… And hey? been there, done that…
Lots of hypo’s and Spikes, but the A1c’s Look great…!

and ask yourself this… Why have thousands who got this many decades ago, ave 175’s for 10-40 yrs before all our new Meds and expensive Toys, last so long without having problems?

Being low carbing and tight control, and this disease eats up what your pancrease used to do automatically, Now it can’t regulate the food, Energy etc… thus why we need to have extra sugar and fat… to draw on…

Very active T1’s eat a ton of carbs…and run 120-140’s to keep that energy level up…
and what if? You run ave of 130’s for your daytime- 12 hrs a day and only 100’s the other 12 hrs when you don’t need all those carbs and energy…? what’s your 24 hr ave.?

as for this is Forever? well, Me thinks you’ve given up Hope… and when you do that? Life is overwith…
What if, you can get a Injection of Islet cells , say every 6 mos? and Bingo, no more Insulin injections… and you have a level 80 All the time? guess what? they’re working on it…

and how about finding all the 1/2 dozen or more Gene’s that cause this problem and rejections for transplants and then find how to destroy them and bingo! Transplants will work…
Guess what? They’re working on it…

so, bottom line… Do the best you can to stay in that magic 5-6% A1c’s, but also avoid going above 150’s and Below 70’s as much as you can…
but, wht good is it to live to 80 if you live the life of an obessed -paranoid person?

You’ve gone thru phase I and now onto th e next Phase…

Lighten Up alittle … yes, for Bkfst and Lunch> 90’s-130’s B4 meals, try to keep them under 140 thereafter for the next couple of hours after eating and ave in the 130’s ave thru out the day…and eat like a Normal person…and add some Real Fat to your life… your body needs it… ripley’s beleive it or not… From Dinner thru the nite and overnite? Go for those nice 90-100 levels and get up in that range too.

BTW… ? I used to have 5% A1c’s , but ave2-3 hypo’s a day and 1 over nite… and guess what that got me? and I can’t tell you ho wmany timesI had to stop trying to do whatever it was…from Mowing the Lawn to doing other House projects to going swiming, even shopping and sitting down and eating Glucose tabs like candy… It was Not the Way to Live, IMO…

And my brother tried to run real Tight control too… Guess what it did for him? He wreck his Car and almost killed 2 other people in another car… he went hypo… and if that wasn’t enough? a few mos later? He beat up his wifefor harping at him and he was? You guessed it, Hypo… like in the 30’s…

and FYI? Less than 20% run under 7% A1c’s and Run Tight Control… it’s like doing alot of other things, like being a Dr., Dentist, Artist, etc… some are and mosst are not cut out to do it… and unless you have alot of time, alot of Knowledge and $ for Alot of test strips, and really have your routines dialed in?
Forget about it…You ain’t ready to try that game…It’s way tooo dangerous.

It takes YEARS to learn all of it not just a few weeks or Months…

have you also gotten and read Think Like a Pancrease by G.Scheiner? Ck it out…

If need help using it? Just ask… or Can Email me at DennisIDDM@aol.com

But be Forewarned… I teach others How to Cheat… and eat like Normal People…
and not be some obessive -compulsive about it… and oh? I have ave 5.8% A1c’s for yrs ever since. too.

Vitrus Eye Hemmorages…

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10

I was a good T1 for 3 months. Low carb, portion control, etc etc. Lost too much weight and Bgs still weren’t always good. So now I am a sensible( for the most part) T1. Not perfect, because I will always have diabetes every single day for the rest of my life. So I plan on enjoying that life. My A1c was 6.9. I was happy, endo was happy, primary care was happy. You will not get back to your ‘old self’ but you can still have a good life.

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I’ve been dealing with headaches lately too… 12 years being in the 200s, then i got on my pump, and i’m down to an average of 105, and my head has been killing me… i think that’s just part of it.

I honestly don’t remember what it felt like before the D hit me (i was two when i got it. I count myself lucky honestly). I just know that i’ll have entire weeks where i kinda “forget” i have diabetes. I just bolus for my meals, and check my sugar at them, and that’s it. The rest of the time it’s not really on my mind. Then i have time where my BG decides to be really stupid, and it’s on my mind 24/7. You will have times when you forget it for the most part, and a lot of people manage to keep their bg under control with minimal effort :slight_smile:

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