It's been 3.5 years since our first diagnosis and 1.5 since the second. Two years into this I thought I had a "handle" on things. We had a routine down, and diabetes was becoming our new normal. We just went with the flow and did what we had to do. I had accepted our new life and was moving on.
Then Princess was diagnosed.
Ever since then I have had periods of "I can handle this". Not real long periods either. In all honesty, I am really struggling lately. I can't seem to get a hold on things. I feel like it is all out of control.
I can't remember when I changed a Pod last or how many times I have restarted that sensor...
Good thing the Pods won't let me forget! Well, they do remind me, but at the most inconvenient times. There are colds and flu and school. All of it is throwing me for a loop.
I used to be totally on top of things. Nothing seemed to rattle me. I could pretty much pinpoint what needed to change and I would change when necessary. I knew exactly what day their sites needed to be changed. I knew when the sensors were due to be replaced. I could spot a trend of highs of lows without the aid of our dandy meter telling me. I could remember Carb Ratio' s and basal rates. I could remember all of it and stay on top of it. Not too much threw me. Now I feel like throwing in the towel. Only I can't.
Their is no throwing in the towel when it comes to Type 1 Diabetes. I am the girls pancreas for each of them. I tell that vital organ how and when to work. I wish I could say that I'm perfect but that isn't possible, since I'm not actually a pancreas. I'm just a poor substitute trying to do my best but feeling like I am failing at every turn. If I stop being their pancreas, then the worst would happen....talk about pressure.
I know that diabetes doesn't take a break, it's a 24/7, 365 day a year disease. There are no breaks. For me or the girls. Problem is I NEED a break. I know I can't have one but I really NEED one. I am stressed and burned out.
I am tired of seeing what this awful disease does to my girls. I am tired of running unexpectedly up to school because a Pod expired or a site got pulled out. I am tired of forgetting things and not being the best pancreas I can be. I am tired of hearing the girls say that they wish they didn't have diabetes. That they hate having diabetes. They don't want to feel low anymore. They don't like their tummies hurting (from ketones) Yes, I hate it too girls.
We are only 3.5 years into this! I thought it would be easier by now. I though I would feel like I knew how to handle things. I thought I would feel like, "we have this, we can do this!", but I'm not. I'm just not sure what to do at this point. I'm not sure if there is anything I can do except to keep praying for a cure that they desperately need.
Then Princess was diagnosed.
Ever since then I have had periods of "I can handle this". Not real long periods either. In all honesty, I am really struggling lately. I can't seem to get a hold on things. I feel like it is all out of control.
I can't remember when I changed a Pod last or how many times I have restarted that sensor...
Good thing the Pods won't let me forget! Well, they do remind me, but at the most inconvenient times. There are colds and flu and school. All of it is throwing me for a loop.
I used to be totally on top of things. Nothing seemed to rattle me. I could pretty much pinpoint what needed to change and I would change when necessary. I knew exactly what day their sites needed to be changed. I knew when the sensors were due to be replaced. I could spot a trend of highs of lows without the aid of our dandy meter telling me. I could remember Carb Ratio' s and basal rates. I could remember all of it and stay on top of it. Not too much threw me. Now I feel like throwing in the towel. Only I can't.
Their is no throwing in the towel when it comes to Type 1 Diabetes. I am the girls pancreas for each of them. I tell that vital organ how and when to work. I wish I could say that I'm perfect but that isn't possible, since I'm not actually a pancreas. I'm just a poor substitute trying to do my best but feeling like I am failing at every turn. If I stop being their pancreas, then the worst would happen....talk about pressure.
I know that diabetes doesn't take a break, it's a 24/7, 365 day a year disease. There are no breaks. For me or the girls. Problem is I NEED a break. I know I can't have one but I really NEED one. I am stressed and burned out.
I am tired of seeing what this awful disease does to my girls. I am tired of running unexpectedly up to school because a Pod expired or a site got pulled out. I am tired of forgetting things and not being the best pancreas I can be. I am tired of hearing the girls say that they wish they didn't have diabetes. That they hate having diabetes. They don't want to feel low anymore. They don't like their tummies hurting (from ketones) Yes, I hate it too girls.
We are only 3.5 years into this! I thought it would be easier by now. I though I would feel like I knew how to handle things. I thought I would feel like, "we have this, we can do this!", but I'm not. I'm just not sure what to do at this point. I'm not sure if there is anything I can do except to keep praying for a cure that they desperately need.
3 comments:
Hang in there, Heather!! We all feel overwhelmed and like things are spiraling out of control...sometimes it's for a few days, sometimes it's for a heluva lot longer! *HUGS*
It is no wonder that you are burned out. I can say, for us, it has gotten easier. That is because she is almost 16, has stopped growing, and although still extremely variable, those extreme growth spurts that keep us up all night and make D almost impossible to handle for days at a time are over. I know you are a long, long way from this and have yet to go through the extreme growth years. Personally, at 3.5 years in, I was nowhere near thinking I could handle this. And you have two children stricken. You need to conserve your strength, you will need to catch up on sleep during the day or early evenings, you will need help from somewhere. One day at a time, just put one foot in front of the other. You may not feel like you can do this but you can do this. You are doing it. I rely on the written log book open on kitchen counter. The BS are then always there staring you in the face Red around the highs, blue around the lows. She changed so often I could have gotten by on temp basals every day, but for the fear the temp would expire and I would forget to renew. So I just changed the basals themselves. Yup, it was every two or three days. It's so hard.You cannot stop D from pulling dirty tricks, just manage how to respond when it does. Control is not possible; management is. But it is management on the fly, every two hours to every three hours, because their blood sugars are so changeable. Couldn't do it without a pump. I think it took me 6 years to accept the extreme variability in blood sugars hourly, daily which has been our experience with Type 1. Don't make any judgments on yourself. Treat the offending BS and move on. Let go of expectations. Just carefully observe and respond. But management of Type 1 is very much in the moment. That they don't tell you or even admit.
I feel like this a lot lately (actually even more so since starting on the pod and getting LESS sleep) and I only have one child with T1D. I can only imagine how much more stressful it is with 2 children. I don't have any answers, just letting you know that there are lots of us out there who know how you feel and are cheering you on from all over the country. Hang in there and try to take it one day at a time....that's all we can do right?
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