For Those Who Have Recovered From Diabulimia

Mental and Emotional Wellness
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I’ve been a T1D for about 14 years now and I lost myself a long time ago. The burn-out hit me extremely hard when I started high school; It was simply easy to give up. That was when I slowly stopped taking care of myself. It must’ve been like 2 years ago that I began omitting my insulin altogether and rarely checking my blood sugar, realizing that I could also lose weight. Since then, I have not come to peace with my diabetes despite all the consequences and complications I know I would get. Dealing with the depression, anxiety, and pain mentally/physically pushes me further away from self-care and motivation. My next appointment with my endo is the day before I turn 21, therefore Im in the phase of transitioning to a new doctor(which is in a few weeks). I feel completely lost and Im all alone on this with no support system. I haven’t reached out for help until now and I am trying to turn my life around, but I just do not know how to or where to begin.

So I have a few questions for you guys based on your personal experiences…

  1. What kind of changes to my body can occur during my recovery?
  2. Will I gain back all the weight I’ve lost? if so, is there a way I can keep it off?
  3. How do you stay persistent without falling off the wagon?
  4. Best advice on how to start?

Thank you for your time xx

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I’ve sent you a private message in response to your post. I wish you the best!

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sending you some TuDiabetes love here as well. here’s a little talk we had here recently. these folks know the subject very well

@Asha1
@cynthia_rogers

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What a WONDERFUL thing you are doing right now! I can only imagine how hard this must be and weigh on you. The good thing is: it will never be as hard as it was for you over the past 3 years, which are THE WORST.

Some thoughts:

My 12-year-old son was dx’d almost a year ago, with an A1c of 12.5. He did not gain any weight (beyond his normal growth) in the time since his Dx - if anything, he has lost some fat, and he is a bit too skinny. Some of the reasons why, I think, are:

  • we eat TONS of vegetables, with a lot of fiber - broccoli, cauliflower, salads at every meal, etc.
  • he starts every meal with 2 glasses of water
  • we have diabetic-friendly snacks at home (for instance, dried edamame)
  • he eats medium carb meals (probably a bit below 150 carbs per day, not counting glucose for his BG) rather than high-carb meals
  • he exercises a lot, which also decreases his insulin consumption by probably 40% or so

I don’t have personal experience from recovering from diabulimia - but from other, similar problems, my suggestion would be:

  • create an online network of people with the same issues on line. FB has GREAT diabetes groups with a lot of people your age, this forum, etc. Peers who are facing the same hardship are a great recourse and encouragement.
  • if you are in college, see if there is a diabetes group there, and what resources are available on campus.
  • possibly volunteer in a camp for diabetic kids this summer. You will make many friendships and will keep in touch. My son and I went to such a camp last summer. The volunteers told us they have made lifelong ties and keep in touch for many years on line.
  • get a CGM. My son’s self management was totally empowered by his CGM, and he really manages himself to his CGM. We LOVE his Dexcom.
  • possibly share your dexcom data with those close to you, so they can alarm you in the middle of the night if something goes wrong as well.

I sent you a PM as well. You deserve to succeed, and I am sure you will. If you can remain involved in this forum this would be helpful to you as well, I think. We are peers also, in one way or another.

EDIT: my son is adding that, among all his sports, the one that, in his opinion, has the most impact on his BG and insulin consumption is swimming (fairly hard sessions).

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You are young just turning 21 and so glad you are making changes and seeing the endo. I did not want to take insulin and avoided it for many years with oral medicines that stopped working after a while. I look back and realize how bad I felt and how hard it was on my body. I started insulin in October 2016 and my blood sugar came down from 12.5 to 8.2 in less than 3 months. The dangers of high blood sugar like kidney failure, dialysis, blindness, loss of limbs, etc., are so far worse than a few pounds. I have gained a bit of weight with the insulin, however, I am seeing a nutritionist this week for diet and exercise. I find hot yoga really helps me and I believe helps with the excess water retention from insulin.

I wish you all the best and speaking from experience, now that I am on insulin, my blood sugar is staying around 100 where it was climbing into the 500s. It came on gradually and I did not relalize how tired and poorly I was feeling until I started insulin.

I believe there are some medications the endo can prescribe to help with weight as mine told me there were some drugs as well as natural diuretics that can help with fluid retention.
I find thinking about harm to my eyes and organs if my blood sugar is high, helps me to eat well and avoid high carbs. I try to stay around 15-30 carbs max per meal. I try to walk every day 30-60 minutes and do yoga 5-6 days per week.

I am 54 and my body is aging so it takes more for me to keep in shape and you are lucky in that you are only just turning 21 and I believe our bodies are stronger when we are younger.

I also find strength in this forum and reading and learning from many with so much experience and wisdom around diabetes. It has helped me with so many answers and support.

Best to you!!

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I forgot to add, there are some excellent resources on this website
http://www.wearediabetes.org/

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@Gigi21

Please contact me directly at asha.brown@wearediabetes.org. I help people with type one just like you every day work their way through recovery.

Your body will indeed go through changes, and for someone with control issues that can be very scary.

When your blood glucose runs high, you become dehydrated as your body works to clear itself of that excess glucose (i.e. you pee all the time). You think you’ve lost weight, but you’ve only lost water.

This fluid related weight loss isn’t “real” and it doesn’t last. You may have noticed that as soon as you start taking your insulin again the weight returns very rapidly. Fat cannot be lost or gained that quickly. The weight that you’re gaining and losing and gaining and losing is mostly water and electrolytes. Tricking the body through extreme dehydration and ketones cannot be maintained for very long without severe, sometimes deadly consequences.

When you start taking insulin again your body will start over-retaining fluids initially to make up for dehydration, which makes you think you’re rapidly gaining a lot of weight. You associate it with taking your insulin.

Taking your insulin is enabling your body to properly absorb nutrients and maintain a healthy fluid balance. This allows your body to heal and rebuild itself. Ironically, the longer you engage in insulin omission, the more you’re compromising your body’s natural ability to regulate your weight. Prolonged high blood sugars can actually damage your thyroid and metabolism, thus making it even HARDER to maintain a healthy weight for your size.

The water retention will resolve. You will not keep gaining weight forever. Your body is going through a process for the next few months and it may be uncomfortable. The way your body looks and feels during this time is not what your body will be like once you are in strong and stable recovery and your blood sugars have been stabilized for a few months. You may need to frequently remind yourself of this.

You CAN achieve a healthy weight and have a better relationship with food. It will require more effort and patience than you may be used to, but the end results are REAL and can be maintained over the long term WITHOUT resorting to damaging your body.

As for best ways to start? No one here is qualified to give you that advice. We’re not doctors, however I know quite a few providers and resources that can HELP YOU get through this. If you’re interested in getting one on one support for this, email me. I can help you.

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@Gigi21, @Asha1 is an amazing resource and can provide great support through your restart process as well if you are willing to contact her.

What you are doing right now is really hard - you should be truly proud.

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