Alone with Diabetes

Type 1 and LADA
#1

I have this dilemma which I would just like to share…I was diagnosed a month before my wedding about 4 years ago. The docs in California had no clue what was going on with me so test after test they decided I was a type 2…fast fwd to the present where I am now 27 years old and I have been living with the label of being type 1 for the past 3 years. Insulin is supposed to be my best friend but WHY do I not take it. Why do I find it so hard to check my blood sugar? It finally dawned on me that I am ALONE. I have no one to share my diabetic experience with, no one who understands, I feel that I must hide it from the rest of my community because being sick is the worst thing ever. I don’t want anyone to pity me nor do I want anyone to attach a stigma every time I get ill.

I always have extreme highs, I always feel as if no matter what I do I am still going to be sick. I guess what I am trying to say is that from the past four years I still haven’t coped with the fact that I am diabetic.

How can I check my blood sugar when everyone in my house is PERFECT! How can I pop my blood meter in front of the staff that I have lunch with? How do stick my insulin in my stomach right before I eat my lunch? I always think to myself that my only option in going to a bathroom stall and tackle this monster that lurks on my shoulder all day long for the rest of my life.

What do I do? I know I am slowly killing myself but I just don’t have the will power to fight this. I always say to myself so what if my blood sugars are high it won’t hurt me when I clearly know the repercussions. What do you do? I am alone in this battle…I have no one to talk to…my husband doesn’t understand…esp. when I am B**** when my blood sugars are high…he believes I just have a bad personality when that is not the case. He always says that I am two different people 1) being the sweetest person on earth and 2) Hell on heels. I wish there was support in my area where I can meet people MY AGE who understand me.

Where do I start? I thought after having my daughter last year that I would find the will power of controlling my blood sugar. I guess I can just say that I am the sole cause of having these crazy blood sugars to control my life and take control of me.

Can someone help because I am ready to make the change.

#2

Hi Rizwana,

I was diagnosed just about 6 months ago with Type 1. At first, I had a lot of the same feelings that you have, but then I changed my state of mind. I think that is FIRST what you need to do.

I think first you need to stop thinking of diabetes as an illness. I prefer the term, “condition.” Yes, we are diabetic, but ultimately we’re no different from anyone else. There are a lot of people on this site who will tell you not to be ashamed of telling others that you’re diabetic, and yes, they are right. But if that is going to make you feel uncomfortable, you don’t have to tell everyone. Obviously your close friends and family should (and probably do) know. But truly, if you test your blood sugar right before lunch and give yourself a quick shot, no one will notice. We all think everyone is looking at us ALL THE TIME, but truly, this is a self-centered state of mind! I realized this when I thought everyone would think I was weird for giving myself an injection in the dining hall of my college, but no one even noticed! If you just test your blood sugar on your lap under the table, and lift your shirt to give an injection, I doubt anyone will ask you anything. And if they do, you can just nonchalantly respond, “Oh, I have Type 1 diabetes, I just have to test my blood sugar (or give my insulin) before I eat.” Either that will be the end of that, or whoever asked might follow up with another question, and if that is the case, you can give them a few sentence description of what Type 1 is. Perhaps, if the people around you show interest in your “condition” (NOT ILLNESS) then you’ll feel more comfortable to take care of yourself around them. And think of how inspiring it is to see someone taking good care of themselves! You will probably grow in the eyes of your colleagues and family members for taking your life into your owns hands.

Furthermore, if there is anything to motivate you to change your perspective, maybe it is your daughter. Think of what a terrific role model you will be for her when she sees how strong her mother is. You will be showing her that yes, your life is important, and look how well you take care of yourself. As she grows up, she will see how important it is to monitor one’s own health. Think of the gift you will be giving her in teaching her the power of taking control of your health–and by extension your life.

And maybe, if you adopt this new perspective, that YOU control your life and how people see you, your husband’s opinions on your “moods” will change. I think everyone in your life will be impressed and maybe inspired if they see how important your health is to you.

Lastly, do you have a doctor or endocrinologist you can ask about diabetes support groups? Often they know of local groups. If not, your doctor may even be able to hook you up with another woman with diabetes with both your permission. My endocrinologist has done this for me. She asked me and another patient separately if we would be interested in meeting another diabetic of the same age. When we both said yes we gave her permission to give the other our email addresses. This has worked well for me, perhaps something like this could work for you. And if not, you always have everyone here at tudiabetes!

The first step is asking for help. The fact that you have understood your difficulty with diabetes with such clarity means you are ready to control the condition.

GOOD LUCK AND BEST WISHES!

-Sophie

#3

Good! Being ready is the first step.

Now, take a deep breath and choose one thing to do tomorrow. Just one thing.

Because that phrase “controlling my blood sugar” is huge and complex when you’re starting from the place you find yourself. I can say that because though I’ve lived with type 1 for 35 years, I’ve started over plenty of times!

Diabetes IS hard and it IS lonely and you are the only one who can take great care of yourself … but you also are not alone. There are many of us wishing you the best.

So, about that one thing: What’s it gonna be? Tell us and we’ll cheer you on.

Perhaps it’s checking your blood glucose when you wake up and writing down the number. Perhaps it’s taking your insulin BEFORE you eat. Perhaps it’s making an appointment with a diabetes educator or an endocrinologist.

After you choose that one thing (and let us know about it), you can successfully do it. And then congratulate yourself on the effort. One small effort builds on the one before it. And that’s what diabetes control is all about. Some days are better than others. Some days are tribulations. But we keep on keepin’ on. Because we are worth it. And so are you.

PS: No one is perfect. Except for all the really cool people with diabetes who hang out here :slight_smile:

#4

Rizwana, I agree that you are most likely suffering depression. Who wouldn’t get depressed from being so isolated. I’ve been T1 for 26 years and up until a month or so ago I was pretty isolated myself. Then I found this community! It helps just to have someone who understands what you experience, doesn’t it?

But Sophie’s idea is spot on. If you take her advice and find someone else who you can get together with, who wants to stay healthy, you will gather encouragement that you desperately need. As a 26 year veteran of this fight I can tell you this: I have never felt so happy I did do the right things for ME than I do now. I just had a great check-up and that’s a great reward (manifested by not being sick!) .

One more thing: I spent too long worrying what others thought about me and, like Sophie said, you’d be surprised at how little they are even aware of your struggle. In this fight, we come first. I and all of us at TU D really care. Get and stay healthy, ok ! Virgil

#5

Rizwana,

First, start by knowing that you are not alone!!! That makes the rest a lot easier.

I would choose one thing that you know is good for you and do it. Then 3 days later add another thing. Take things one step at a time, but keep moving in the right direction.

I am 27 and was diagnosed with type 1 6 years ago. For the first year, I saw a psychologist to help me deal with adjusting to living with and accepting diabetes. It helped me … a lot. I highly recommend finding someone that you can talk to… because it can feel overwhelming alone!

And please keep us posted on how you are doing!

#6

Rizwana:

I am sorry to hear of your pain and suffering. Let me discuss a bot of my personal history as a way of answering some of your questions.

First, Please see a therapist. If you need anti depressants, (I do) they will be able to help yo along the way. Now I was diagnosed 35 years ago. and I tried my best to run away form it for years. Unfortunately, you can run, but it wont help. You will only end up sicker and in worse shape. my doctor told me something i will never forget. he said when you are sick and tired of being sick and tired, you will take care of yourself. I think he was right.

Ok, so what steps should you take. First, call a therapist tomorrow. Do not wiat. Tell the therapist when you get there, exactly what you have told us. Also tell the therapist that you need help coping with your diabetes. they should help you secure a doctor, give you some help dealing with the public issues and most important realizing, the folks around you are not perfect. my sense is that you should also discuss having your husband attend some diabetic education classes with you. Nothing really helps like having a spouse go with you. Not to laud over you, rather to make sure they have some skin in the game as well.

I have been married for 32 years, and diabetic for 35 years. i do knwo tow things, your spouse wants you to succeed, I am sure of it. Even if they tease, or act inappropriately, it is because they do not know, not that they wish you problems.

Finally, please keep us updated on how things are going!!! we value you and you are among the best of friends here.

rick phillips

#7

Hey Rizwana,
Like everyone is saying, You are not alone!!! I don’t know where in Ca. you are, I am in SoCal, Inland Empire.
One thing I am not your age and have only been Dx’ed last Aug./08 at 52, yea I am a freakLOL
If you need something, contact me

#8

So here is my support for you and my advice. You are not alone, we are all around you exept you dont notice or never looked. I was like that until I landed in this corner of the world. I realized that there are more people who understand what I go through everyday and I had to accept that my family may never understand what I go through. In a way I hope they never do and I think that is why I accept that they only know what I go through very little. I sometimes fight the diabetes battle at home by myself. My wife really does not “participate” in my condition. Sometimes I think she is more anoyed by my lows and less concerned. I realized that is who I am with the highs and lows and in between. its part of me. I can only change somethings and not everything. there are a lot of good discussions about people injecting in public. Do a search on “injecting in public”. I was an insulin dependent type 2. Once I stopped caring about what people thought when i injected I started to get better control and eventually went off insulin and then to pills. With the way the pills make me feel, i think i rather go back to shots.

An intersting thing happened at work. I started to share with some people at work I had diabetes. Turned out that some of the people that I talked to had wifes with gestational diabetes. Then eventually asked me for advice on managing. Then some people started to ask me for advice on nutrition. I have my own routines and people around me accepted the routines that I keep and how I eat and what I eat. they accept that I have certain eating habit and when people go to lunch with me they know what they are getting into and after a while they dont care.

I always test before lunch at my desk. So the smell of alcohol is in the air and the beeping of my meeter.

So where do you start. Start with small steps. Control what you feel confortable with. Start with breakfast, check your numbers and ajust for your shots since most likey you are by yourself at that time. Work on lunch little by little. Then dinner another time you are not around people. It took me a while to adjust to doing shots in public. I always did them in the car. I made it a point to always drive to lunch while at work so I could have my alone confortable time for shots and me. Read the blogs on this site and you will realize that you walk the path we all walked at one point of our lives and that its ok to be you the way you are. take care of yourself. We are with you

#9

Hi Rizwana,

You can do it & we’re all here to help you, cheer you on & share the isolation. Also to listen whenever you need to vent the frustration that we all feel.

Realize saying it doesn’t make it feel any different for you, but there’s nothing to feel embarrassed about or ashamed of. We are who we are & aren’t responsible for having diabetes. We are responsible for taking care of ourselves.

Acceptance is hard, very hard. Looking fear square in the eye really does make it smaller. You’ll feel better when you accept this condition & talking to a counselor helps. When we stop hiding it from ourselves, we don’t have to hide it from others. We’re not imperfect, just perfect in a different way.

As the others said, start small so it’s not overwhelming. Reward yourself for accomplishing a goal of testing, eating right or whatever. Wanting to make a change is the first, biggest step–kudos to you!

Since testing in front of others bothers you, test in the bathroom. I do this in restaurants so I can wash my hands first, though I don’t mind testing or injecting in public. I never use alcohol wipes. It dries skin badly, but works if you can’t wash your hands.

My husband went to diabetic education class with me & to my first couple of doctor appointments. Helped him learn what I was going through & dealing with. You’re not alone in being really cranky when high. I’ve spent a lot of time apologizing after my impatient outburts.

#10

Sorry Dave, I just can’t help but respond to your post. You’re pretty quick on the trigger to diagnose someone from a single post and from afar - and then go on to tell her exactly what type of doctor to see and then on to prescribe specific medications.

In a situation such as this where people are looking for help and support, it annoys me when others who feel they have it all figured out proclaim the Absolute Truth about the situation. It would seem far more helpful to listen, offer support, encourage an on-going dialogue so all of the circumstances could be known rather than jumping to conclusions.

Again, sorry and I don’t mean to offend, but Rizwana has several issues- not just diabetes- and your three line diagnosis and simplistic pronouncements really push my buttons.

#11

Hi,
I can relate to your problem because I was exaxctly the same as you. Actually, i still dont like people to know that i’m diabetic and I certainly will not inject or test in public. So let them think i have a weak bladder! The 1st step is acknowledging that you have a problem (and i dont mean Diabetes) and start changing your mindset. You HAVE to test, you HAVE to inject. Start small, like just try to test every morning when you wake up. once you’ve got that sorted, add another time to test, maybe lunch time. Before you know it you’ll be managing your D better.
Good luck and shout if you ever feel like it’s all getting too much. We are all in this together and know what you are feeling.
Stay well
Debi

#12

hi there feel very sorry for you but you will get there in the end i’m type 2 takes quite a while to used to the changes. i wish you all the best

#13

I completely agree. I was really alone and isolated with my T1D for 11 years before I found this community. There is nothing like finding someone who understands. I’ve become really more open with my disease to my new friends in my “real” life and I’ve really opened up about it- testing in public, injecting without panic attacks, etc etc. Talking to other people who deal with the same issue that I do makes me believe that “hey, maybe I’m not so strange.” and you know what? maybe it’s not so bad?

This community has really changed my entire outlook on T1D. You guys have made it bearable.

#14

Rizwana,
I hate being diabetic. My mom was diagnosed with celiac disease (no wheat or oat products). After learning about that, I was grateful for diabetes. Well, not really, but it made me feel better, because celiac disease sucks.

The better care you take of yourself, the better you feel. The worse care you take of yourself, the more depressed you will feel also. The doctors tell you that you have to be perfect. That is impossible, and they know it, they just don’t tell you. They should tell you to strive for perfection. I take 6 units of levimir before I go to bed 1 week out of the month. I take 7 units for about 5 days, and I take 8 units the rest of the month. Totally normal. Why didn’t my doctor tell me that monthly hormonal changes will change your insulin requrements? For the same food I take different amounts before 10 am than I do at lunch, which is different than what I take at dinner. Why did no one tell me this? It is pretty close if you figure it out for yourself. I know it seems overwhelming, but I feel so much better.

All of us want to be perfect, but if you expect yourself to be perfect, you will make yourself crazy, because it’s impossible. You are trying to do what other people are blessed to have done automatically for them. Ask your husband for help if you need it. Men love to fix things or at least try to help. If you are struggling, let him know. Tell him what whould help you. I tell my boyvriend. When my boyfriend cooks for me, he writes down how many carbs are in it. It is corny, but it is sweet, and it is his way of helping. Plus it keeps him busy.

My boyfriend bought me a book that changed my life. “Think like a Pancreas”. It covers the basics. You can get it at amazon.com . You can go over it at your own speed, and it emphasises that you don’t try to start being perfect. I cried when I was reading it, because I get really frustrated being diabetic. The book discusses different things that affect your bs, and how to handle them. Thinks like stress, caffeine, fatty foods, medication, dehydration, sex, alcohol, irregular sleeping, exercize, weight gain and loss. Things like The book tells you, for instance,
Week 1: Check blood sugars before you eat meals and snacks.
Week 2: Start adjusting insulin based on blood sugar levels
Week 3: Figure out how many carbs are in what you are eating
Week 4: Start adjusting insulin based on carb counts
Et cetera.

You are not alone. We are all frustrated by diabetes. We just learn to deal with it. If someeon expects you to be perfect either ignore them or tell them that is impossible. When I first found the website 1happydiabetic.com, I thought "What an oxymoron, “happy diabetic”. These sites give me support and help me realize I am not alone.

Good look.

#15

Forgot about this link. Great for me.

http://www.1happydiabetic.com/apps/blog/entries/show/1881020-musts-shoulds-oughts

#16

I’ve got to tell you that I often feel just like you.

No one understands who doesn’t face the same things - they may know, and may empathize, but it’s hard to grasp until you’re the one holding the wheel, so to speak.

What I would suggest is that first, you find a doctor who will help you in the way you need - for me, that’s suggestions and ideas without judgment and lecturing. I can’t tell you how many times I heard condescending babble from physicians that were often dead wrong, and in any event speaking to me like my disease was my fault, like controlling it was easy, and like the things they were suggesting I give up were nothing. It’s NOT easy, or not for me, anyway. I have delayed digestion and my insulin absorption rates vary really widely (more than average) with stress, exercise, and dosing site among other things, leading to both highs and lows, and seizures when I’m sleeping if I push it.

But you know what? You can still do pretty damned well. My A1c now averages maybe 6 even (last one was 5.9), and I am able to keep myself in control many days (today I hit a low of 70, just now, and a high of 190, post lunch - some people will say too high, too low, do this, do that, but everyone’s disease is a little different and we all do the best we can).

Getting a doc who will work with you in the way you need - for me, to listen to you and provide suggestions without lecturing, may be a big help. (I have one now, and I am willing to fly to see him when necessary, and pay MDVIP for 24x7 access.)

A CGMS system may also help you. It may sound too advanced and like too much work, and it could be, but for me, seeing my BG, all the time, motivates me to stay in better control and funnily enough, I now check my blood MORE often than I used to, not less. I’ve also learned a ton about my body, including a few big surprises, by using it.

Anyway, good luck - some days will be harder than others, some days you’ll have to let go and that may be hard, and some days it will seem like no one understands, and maybe they don’t (or at least not the folks you’re closest to), but this is something you can manage. Be confident, and there are plenty of people out here to answer your questions and share your frustrations when you’re ready.

#17

Gotta agree with you Mark. I went through an extremely rough spot a couple of years ago and made the horrible mistake of agreeing to go on depression drugs. Key word: mistake. When I started feeling better (not because of the meds but because I figured out how to deal with my feelings) I decided to stop taking the meds and was hit with so many terrible side effects that it took me three months to get completely off of them! Everyone please please PLEASE do everything possible before you decide to pop some pills!

#18

I don’t believe I read that Cassie abruptly quit taking the medication, thereby causing her terrible side effects- in fact, she stated that it took three months to get off of them. And I don’t think it’s pulling a “Tom Cruise” to say she had a bad experience and from her perspective to please consider carefully before you go on medication. It was her experience and is as valid as any other, so please don’t be demeaning by invoking “Tom Cruise”.

As you said, “That’s for the doctor to decide” which was my original point- NOT anonymous posters on the internet. I feel it would be more productive if we refrained from pronouncements, diagnosis and prescribing and instead offered encouragement, shared experiences and support- no matter what an individual might decide to do or not do.

#19

Like Kelly and others, I, too, have “started over” many times in my 19 years as a type 1, vowing that this time I’ll get it right. You know what? It’s hard for all of us. I have it “right” right now, and for the last two years, and I credit my community here at TuDiabetes with helping me stay on track.

Some baby steps that might help (they’ve helped me at different points) are the following:

  1. Get a few extra meters (you can often get them free) and leave one in your desk at work (for testing before lunch and before your drive home), one in your purse, and one at your bedside. Use the one on your bedside for testing when you get up and before you go to bed so you can take corrective insulin before your long night or long day begins.

  2. Vow to know your blood sugar before you eat, every time - even if you feel right now you have to sneak off to test. I test and take my insulin 20-30 minutes before I start eating, so it’s not like you need to sit at the lunch table bleeding with your co-workers. It also helps reduce post-meal highs, which is when we’re highest each day. It’s your post-meal number that has the worst effect on your A1c.

  3. Accept that highs not only make you feel sick, but that they actually cause an adrenaline rush, rage, and irritability on a chemical level. Ask your husband for patience and ask him not to escalate things when you’re high and to talk with you about the situation when you’ve come back down. My hubby just called to tell me he’ll be home late and that he canceled dinner with our friends. I was over 200 and snapped his head off and hung up on him. I realize now it’s because I was high and irritable. When I share with him that I’m high though, he doesn’t fight back. He just pats me on the shoulder or leg and says, “You’re okay, baby” and it tends to take the edge off. The snakes coil back into my hair and my eyes return to their normal color. It makes me realize I’m letting my body have control over my mind.

Testing more will help you get a grip on the “no matter what I do” feeling. I can relate to that feeling ALL TOO WELL. Testing more made me see that I needed changes to my insulin dosaging, to the way I ate, and to the timing of my insulin. Testing more made me see that I had so much more control over diabetes than I thought I did. It took me nearly 15 years to learn that highs were something I could control if I just knew my body better and knew how to change my next action based on the number in front of me.

#20

Oh, Rizwana. It almost made me cry to read your post. I have been there. I have started over so many times–recommitted to be healthy and take care of myself. But, I really think you are getting there. Three years seems like a long time to have diabetes, but it takes time to deal with and accept. It takes time to learn the ins and outs, to be honest with yourself (and others) about the disease, and to be kind to yourself. I have had T1 for 12 years, and some days I feel like I just can’t muster the strength to deal with it.

I think you are hitting on a key topic, and that is acceptance. One day you look yourself in the mirror and tell yourself, “Okay, look. I have T1 Diabetes. And it sucks sometimes. And it is unfair. But I can’t change it. And all the energy I spend denying this to myself and the world could be spent making myself feel better. I will do the best I can with it; I am human, and that is all I can promise.”

Also, the older I have gotten, the more ruthless I am about managing T1 in front of others. I mean, this is part of my life people, so take me as I am! This has helped in a number of ways. A.) It helps me admit to myself that I have a serious condition. Sneaking glucose tablets and injecting in bathrooms makes me feel ashamed–and even more alone, I might add. B) It makes other people more comfortable about asking me questions and talking about my disease. And C.) If something comes up (low blood sugar, high blood sugar) and I am either acting weird or have to cancel, etc., diabetes is already a subject on the table.

If you try to be perfect, you will fail and get de-railed. Try just accepting your T1. Accept that you have it, accept the dangers and realities of it. Then pick one thing to focus on at a time to improve. Often times that can have an indirect effect on other problems.

I understand that you feel alone. It can be frustrating to be around people without diabetes. They seem so carefree! Sometimes I want to shake them and make them realize how good they have it, how diabetes is like having another job, where you are on-call 24/7.

By the way, I am 27 years old as well and also live in California. You are not alone, my dear! At the end of the day, just know that.