I was born with Spina Bifida (a rare form, and did not suffer nerve damage until early adulthood, but am now in daily pain), I was diagnosed with asthma/allergies at the age of 5. I was diagnosed with T1 at 14, Hashimoto’s in my mid 20’s, and after suffering for 10+ years with painful tendinitis I have recently been diagnosed with RA and Asperger’s.
So basically I’m in pain every day. Some days it’s more manageable, my mobility is affected, and my energy levels can go from high to non existent in a moment. I try hard to eat well but I often don’t have the energy or am in too much pain to cook. My disabilities prevent me from exercising (except for wheelchair soccer, which I love). I am trying to get a wheelchair of my own but insurance isn’t cooperating. I often get depressed because I don’t have access to the mobility aids that would allow me to live a more normal life and am instead forced to suffer through a part time job (that I love but that leaves me in bed in pain for days when I’m not working) just to survive. Outside of work and the grocery store I’m pretty much stuck at home. I can’t go for walks or even go shopping if it involves more than 1-2 stores.
All of these things make managing my blood sugars difficult and inconsistent. Days where I’m in pain, low energy or depressed my blood sugars often run high because I don’t have the ability on those days to eat or deal with it properly. I am recently married and we want to have a family but just keeping my A1C in the 7’s is extremely difficult let alone getting it low enough and stable enough to get pregnant.
What works for you guys on your bad days? Do you find that your T1D affects your other conditions and vise versa? How do you you achieve consistency in your diabetes management?
I do not have multiple diagnoses that affect each other, but are you on a pump? If so, you should be able to adjust your basal rates for days that are low energy/low movement to help bring those numbers down. Wearing a CGM will also help you keep better track of things. If you’re not able to obtain either of these devices, I would just suggest testing more often (every 2-3 hours) and being more aggressive with correction doses when needed. The more you test, the more information you have to act on. If you’re hoping to be pregnant in the near future, you might as well get used to testing a lot more than usual anyway, as you’ll have to keep it up once you are pregnant.
Also, if you haven’t read it, pick up a copy of Think Like a Pancreas. I had diabetes for almost 30 years before I read it and, even after all of that time, it completely changed my thinking on how to manage my diabetes for the better.
Yes I’ve been a pump user for 16 years and I’ve finally found a way to wear my Dexcom despite fairly severe allergic reactions to the tape. But I developed a lot of bad habits when I first went on the pump 16 years ago. After loosing all of my newly acquired teenage freedom (I was dx my first week of high school) the pump was my ticket out…or so I thought. I began eating whatever, whenever and frequently dismissed measuring or counting carbs and often forgot to even bolus at all. Some of what I am experiencing now is a result of that. Breaking habits is hard and when you add Asperger’s into the mix it takes on a whole new type of hard. My blood sugar is so erratic that there’s no telling if it’s due to my mistakes, my other health conditions, pump settings etc. Fasting basal tests only prove that point as my numbers rarely show a pattern. When there is a pattern it’s difficult to understand and never responds appropriately to changes my dr makes.
My current pattern is high blood sugar that does not respond throughout the night. I have tried square blousing for dinner and/or snacks as instructed by my educator but I just end up with a massive spike in my blood sugar an hour after I eat. Anyways, following the un-responding high my blood sugar makes a steady downward trend until it goes low always affecting the timing of my thyroid medicine. If/when my blood sugar stays steady overnight around the time I wake up it begins a steady trend upward even though I haven’t eaten even a bite of food.
I have heard of that book. I will look into getting a copy of it. I do have Sugar Surfing and it’s a great book but a bit overwhelming for me in my current state.
What you’re describing (blood sugar rising in the early morning even before eating)is called dawn phenomenon. Most diabetics have this problem–as your body begins to wake up for the day there’s a surge in hormones that raises blood sugar. It’s fairly common. You likely need to raise your early morning basal rate to combat this.
As for the massive spikes after eating, try pre-bolusing for meals (like 15-20 minutes before you sit down to eat). I know this can be tricky because you don’t always know exactly how many carbs you’re going to consume, but if you give your insulin a chance to start working BEFORE the food enters your system you can prevent or at least limit the severity of the spike. You might go low when you first try this, but a little trial and error should help.
For sticky highs, try a super bolus. Look at your basal rate at the time of the high and bolus 2 hours worth of your basal rate. Once the bolus goes through, suspend your pump for 2 hours (or do a temp basal of 0% for 2 hours–this way you don’t have to remember to turn the pump back on). This gives you a spike in insulin and you’ll see a steep drop on your CGM–the idea being that suspending the basal while the super bolus works will keep you from completely crashing. Does that make sense? Also, keep in mind that doing this will mess with your “active insulin” amount since you just took your basal rate up front and not a true bolus.
Just some ideas to try. I’m not a doctor, so if you’re not comfortable adjusting your own insulin rates you can discuss this with a doctor.