Ever feel "jailed" by this disease?
Yes, I do… It’s hard to explain… I have brittle Diabetes! I can walk up to 2 miles then my legs start to hurt… My kiddos like to go shopping when we are in a big town… My family and I do things that I have to quit early before my legs hurts really bad… I just go rest until they get done…
Don’t we all at some point in time? I sometimes feel like I’m stuck in this lifelong rut. Being young doesn’t help because nobody I know is on daily medication. It makes me feel older than I really am. Every few weeks I somehow break down and cry and say I hate diabetes and I want it to leave me alone and stop tormenting me. Anyone who has diabetes would definitely feel trapped by this condition at some point, I reckon.
Hey ladies. When I as 12, 6 years after I was diagnosed, I fought FOUGHT to not do my shot, eat right etc etc. My mom did the Best thing for me, a little tough love. I did not want “her” dinner, I wanted cookies!! So she brought me two and my shot. She left me in my room, yelling up a storm. I threw the needle at my door (not made for target practice, lol) and cried. Then after an hour, I started to feel just awful. I made a decision, live my life with the disadvantages or advantages of this disease at the forefront of my mind. I chose advantages.
While it has helped throughout the years, I still have my “tantrums.” I feel like my childhood was taken from me. I was always monitored, told on, watched over, poked/prodded etc etc. Not until this past summer did I really, and I am REALLY start to deal with it. I needed to recognize why I was doing certain things. Were the helping or hindering me? A heck of lot was very hindering. I have made some drastic changes. Although I am grateful and very humbled these days, I still feel "jailed."
I wish I could just jump up and start my day. I wish I could sleep all day. I wish I could eat whenever and not think about it. I WISH I DID NOT HAVE TO THINK.
It is like this disease holds me to this "jail of things I cannot do."
Of course I try really hard to say, but I can do this and this…
Although we struggle to not let this disease “run our lives”, it still does, to an extent.
It is all about balance within yourself. You need to triumph, cheer and break down.
I have coined my jail “trial and error.” It seems everything I “try” changes in a week or a month. I feel like I error out more often then not.
Shawna, I was diagnosed 6 years ago as “brittle”. I call it, nothing works. For me, I try what my Endo suggests, knowing my body’s boundaries and he wants to see change in a week. Now, I have my habits. We all do. I have my issues, those are important to me, no one can ever take that away. Just remember, there are others out there going through the same thing. Obstacles are meant to be analyzed, I personally like to plow through but my body sometimes only allows me to go around.
Daena, yeah, we all do at some point. We feel stuck. How do we get out of this? This constant, constant management is very tiresome. Although I look young (as do you), your body disagrees. Mine does daily. I am always tired. Oh so tired. I do not break down as often but it helps to let it out.
But ladies, let’s stick together to not be jailed or feel trapped!
I wouldn’t use “jailed” to describe how I feel about having diabetes. It’s just something to accept. I take pride in good control & yet, get frustrated when I count everything up & do my bolus… & my blood sugar is still high.
Everyone has their days when they want to give up. But when you have people around you to support you & give big hugs… thats just a positive kick in the butt to stay healthy. :o)
I understand the feeling. There are times that I have walked around with a chip on my shoulder feeling the weight of the world. (Excuse the trite expressions) People sometimes ask stupid questions, or ask why you have to take insulin when so and so just went on a diet and they now don’t have to take anything. Once I was asked if I ate too much candy as a kid–like that was relevant to the problem. Someone else mentioned I was too skinny to be a diabetic, therefore I was lying. But these moments are fleeting, and I take pride in educating the ingnorance out of the general population. There is a lot of responsibility in keeping up with the disease, but then, I often consider the alternative of not good care, and I think I will work hard to keep up with it,
I think the best thing is that we all keep talking. Sometimes expressing what you are feeling to someone who understands makes all the difference in the world. I wasn’t too much older than you when I was diagnosed. I have my good weeks and bad weeks. My worst time? The past two years when I began to develop thyroid problems. I kept on going in and asking for my thyroid to be checked…and it kept on coming up normal. My life began to fall apart. I was gaining weight, but eating 1200 calories, I had no energy, my skin was terrible, I was cold all of the time, my triglicerides and colesterol were terrible. On an average day, it was all I could do to get out of bed, go to work, get home and fix dinner, and then pray my son would go to bed early and stay there so that I could get to bed too. The worst part was going in the doctor’s office and getting the fateful phone calls back where his skinny blonde nurse would tell me that I clearly was not following my diet plans and to clean up my act. (I think I cried for two days after that call.) So…I changed Doctor’s found one who was connected to Southwest medical center, was up on his research, and was mulitdiciplinary (mine is a fertility endocrinologist, ob/gyn, and weight specialist). I went in…tired not to sound like a whiner…described all the things that were going on… begged for help. Bloodwork came back within a week…yes regular thyroid levels were normal, but TSH/TRS was at the low end of the range. He put me on synthroid. He took me off of the 1200 calorie diet and put me on a volumetrics diet of 2200 calores–but I don’t count. I eat approximatly 400 cals for each meal and 100 cals every two hours. Now I measure by carbs. He took me off of lantus and back onto N (Which I hated) But manupulated it until you could clearly see the limitations of the insulin in my system. He recommened an insulin pump. The end result within taking synthroid for 6 weeks, I had energy again. It took 8 weeks to start losing weight again. But in that time, my triglicerides and colestorol fell into alighnment. I have lost almost 27 pounds now and have another 13 lbs to go until I reach my target weight. To be sure, I am loosing it at a grade rate of a pound a week, sometimes two, but it is still loss. I have energy–endless, boundless energy. I feel good. But still, I am sure that it was my health over the past two years that caused my divorce and the breakup of my family.
OH GOD YES!!! I get that way sometimes. I too was told I was a brittle diabetic years ago (like about 15) It makes it hard to even go get take out food sometimes. I haven’t drove in years thanks to those stupid lows! Life! What ya suppost to do though!
It is good to see all of you discussing this. We all go through different things but one thing we have in common is the frustration of this disease. I kept to myself for years because no one understood and the questions/comments were too much to handle. Recently I waved the white flag and said, I give up! I need help! I had always had it with my doctors and I am so thankful for that. It was really from family and friends that I asked for the support from. It is still hard. SO hard to explain but I am trying and that is what matters to me. The ignorance out there is overwhelming but I can brush it off now. They just do not understand. And that is ok. There are others like you that do! And that helps!