5 things any newly diagnosed type 1 should know

[Lynnzhealth]

I was really interested to read your post even though it was from a while ago. I was diagnosed as type 2 diabetic just after Christmas this year but within a month and with BG readings of 33 +, my antibody tests came back as type 1 - all at the age of 72, and am on insulin 4 times a day with BG readings (meant to be) 7 times a day. As a needle phobic I am shocked, angry and distraught and can’t face the thought of doing this for the rest of my life. I ask myself if I will ever accept all the limitations. Any tips for coming to terms with it all please?

I'm sorry to hear that. I got quite a shock thinking I was T2. Then to find out it's actually T1. WOW! I'm now 75 and I still ask myself that. I can't say that I like the limitations any better now. I don't know that I have any tips for you since I still have my emotional spells. They could be caused by the ups and downs because it plays havoc with one's whole system. However, I can tell you some things that I do.

I have to be very careful when I walk the dog. I never know if my BG is going to go up or down, so I have to be sure to have supplies with me at all times. No more leaving the house just for fun. I get very frustrated with that. Life is definitely not the same for sure. I take shots 4 times a day, too.

Are you on the monitor/sensor system? I have the Freestyle Libre 2, so I can check my BG as often as I want. One problem is that I don't always feel the hypos unless they get to the danger zone. I don't want the hypers, either. That's when the organs start to get compromised. I can't afford that because I only have one kidney.

One thing I have done and still do is keep track of every meal, BG and dose each and every day because that sometimes helps me figure things out. I might be OCD, but I'd rather be safe than sorry. Although some days it all seems to have a mind of its own. That's the frustrating part. I have attached a photo of the sheet I use to keep track. I got it from my Diabetic Educator and photocopy it when I run out.

Another thing that I find is that I can't walk very far if the day is humid. My BG drops like a rock. And, I when it's cold out it normally rises. A few times it has dropped. It's so confusing to try to keep up with it.

There is a blog I follow where I get good information (LetMeBe83...) and I read or watch Youtube videos from Doctors who have it or whose kids have it. Very informative. Have you read Dr. Richard Bernstein's book "The Diabetes Solution"? He got it when he was around 12, decided to become a doctor at 45 (he was an engineer) because he couldn't get any information about diabetes and how to control it. He is now 89 or 90. So, I would rather take his advice than from doctors who don't have it. They don't know how it feels, but I definitely do.

I better stop now because it's a lot and could give you brain overload. I hope you can get some good information and get a handle on this. Hopefully, some of this helps you.

Take care of yourself.

 

[Lynnzhealth]

Have you considered the little “Tickleflex” device to help with needle phobia? I use it just to help inject one handed in harder to reach places but have also noticed not feeling the injection, to the point I’ve wondered “ did that actually go in?” I ordered mine directly from the website. Quite inexpensive so maybe worth a shot?

Thanks for this info. I have never heard of that before reading your reply. I checked it out on Amazon.ca and it's $54.00. I don't know why it's that expensive. I also checked out the website for it and it's only $24.95 from Australia. It's almost that same amount in Canadian dollars. I didn't check out their shipping costs yet. They say free shipping but that might be for Australia only. Thanks again.

 

[MommaE]

Thanks for this info. I have never heard of that before reading your reply. I checked it out on Amazon.ca and it's $54.00. I don't know why it's that expensive. I also checked out the website for it and it's only $24.95 from Australia. It's almost that same amount in Canadian dollars. I didn't check out their shipping costs yet. They say free shipping but that might be for Australia only. Thanks again.

After checking again realized I actually bought mine from Pimp my diabetes. It was $25 Cdn, shipping was free as I also got protection cover for my Freestyle reader. I think shipping cost depend on how much you buy, mine might have been a sale, not sure. I’m pleased with it though.

 

[briantaffy]

I am a 21 years type 1 man. Aged quite old at 78.
I cannot get rid of my snacking regime.
I have acquired a Freestyle Type ?2 sensor and it bleeps so much; mainly [1] - when I am out on my one hour bike ride, and {2] It bleeps almost immediately whereas the insulin takes maybe 30 minutes to start working. Just a moan, no need to reply. Oh and I have two other autoimmune conditions viz coeliac and RA. Brian T

 

[In Response]

I find it very sad when I read about people who are newly diagnosed with Type 1 say that they cannot cope with the limitations.
Thankfully, when I was first diagnosed (20 years ago), I was told "diabetes should not stop you doing anything". And it hasn't. Sure, I have to be a bit more prepared than I was but with new technology such as Libre, it is much easier than it was.
It took some perseverance with lots of trial and learning but it has never stopped me travelling, working long but rewarding (albeit often stressful) hours, exercising (everything from cycling to running to climbing to sailing to flying trapeze to ...) and eating what I want.
Currently, I have no complications from my diabetes - all my blood tests and eye test (apart from those about getting old) come back clear.

I believe it is a strong case of attitude and that first appointment telling me I can do what I want started me on the right course.

 

[hboyt]

We could be. lololol Scared the heck out of me as I'm sure it did you. I definitely wasn't prepared for that. I am still confused. I was on very low doses of bolus at meals, however, this past few months it seems I need more, so I've been experimenting. I eat very low carb and when my BG goes up higher than I want, then I get frustrated. For instance, if my BG is 7.7 before lunch and I dose 1.5u and 2 hrs after my low carb lunch it is 13.7, I'm frustrated because that is out of range. I really want to be more consistent and stay within range. So, does that mean I didn't take enough? And, if my BG before lunch is 9.3, I dose 2.5u and 2 hrs after lunch my BG is 7.7, does that mean I dosed too much? My A1C in Sept. was 7.6. I want it to be lower, as in around 5. I live in Canada and we do the #s differently. And, if I don't eat as much protein as I need, would that make a difference? I have been reading Dr. Bernstein's book and trying to keep my BG down to avoid all the complications, however, I feel like I'm missing something. Any help would be appreciated. Stay safe and stay well.

How soon in advance do you take your bolus for lunch? It took me years to figure out the amount of carbs you take bolus for didn't matter but the pre-bolus wait for 10-15 (even 20 minutes if it's a lot of carbs) after taking the insulin to eat makes a world of difference!

 

[Lynnzhealth]

How soon in advance do you take your bolus for lunch? It took me years to figure out the amount of carbs you take bolus for didn't matter but the pre-bolus wait for 10-15 (even 20 minutes if it's a lot of carbs) after taking the insulin to eat makes a world of difference!

I usually take it just before I eat. My Diabetic Educator said not more than 10 min. before. Sometimes I forget. I'm on very low carb, and it's hard to know what dose will be correct. I never know which way it's going to go. If I go out to walk it can fall rapidly, so I have to be prepared. I live in eastern Canada. I had bariatric surgery nearly 42 years ago and I think that might be contributing somewhat. They told me to be careful with protein (and that stuck in my head). Nutrients and food don't absorb as they would with someone with a normal stomach. I can relate quite well with your numbers and doses. It's frustrating to me, too. My last A1C was 6.9 and my DE freaks if it's below 7 because I'm 75. I want my numbers to be within range, too. If Dr. Bernstein can reach his 90s doing low carb, why can't I? He probably didn't have bariatric surgery. I also have a couple other issues that might be interfering with my BG. And, I find when I actually eat protein my BG is better. One would think I'd have learned that over the past years. Here's my example for breakfast today: It was 8.7 at 7:39 a.m. I dosed 5u. I had my low carb breakfast and it's now 10.4 (2hr). I have the same breakfast everyday. Yesterday, it was 9.0, I dosed 6 and it was 8.1 (2 hrs). So, I ask myself. If I had dosed 6 today would it have gone too low after 2 hrs? Somedays I take even lower doses and it can still be one way or the other. I am confused and I think I'm missing something, too. Time for more research. I hope we both find out if we're missing something. Take care.

 

[Lynnzhealth]

How soon in advance do you take your bolus for lunch? It took me years to figure out the amount of carbs you take bolus for didn't matter but the pre-bolus wait for 10-15 (even 20 minutes if it's a lot of carbs) after taking the insulin to eat makes a world of difference!

I decided to experiment today and see what happens. My BG before lunch was 9.9. I dosed 1.5u. I ate 1 and 1/2 slices of low carb flax seed bread (homemade) with peanut butter, tea and a low carb sweet. Then my dog and I went for our walk. We walked about 65 minutes. I checked my BG when the timer went off. 14.1! This is so frustrating. I don't want it this high, so I'm going to take 1u for correction. SIGH!

 

[Getting_Fit]

Written by Stephen Ponder and from the sugarsurfing.com website, this extract is what all newly diagnosed type 1’s should be told, please share:

Type 1 diabetes often arrives totally unexpected. Shock, denial, fear, and sadness are usual first reactions. For most, the maelstrom of negative emotions swirling around the person and family will significantly influence what happens next. The following are the top 5 things I feel are essential to convey early into the diagnosis: if not at the very first encounter in the emergency room, hospital, or clinic. These points are based on 35 years of caring for hundreds of newly diagnosed persons with type 1 diabetes of all ages. They are tempered by my own 55 years of living with type 1 diabetes. They are not necessarily in order of importance, except for perhaps the first.

1. No one caused this. Many persons harbor feelings of guilt that something they did (or did not do) led to diabetes. Type 1 diabetes is the result of an autoimmune action taken against the insulin-producing beta cells in the pancreas. No acts of volition or omission cause this to happen. That must be made clear from the start. There is no room for guilt and shame in diabetes and it is vital to dispel this at the beginning. I aim for this to be the first thing I teach. Often there is an audible sigh of relief after this information is shared. This makes it easier to introduce the other key points.

2. A normal life is the goal. Life with type 1 diabetes has never been brighter. With ongoing support and diabetes education, all of life’s opportunities remain within the grasp of persons with diabetes. When complemented with emerging tools and technologies, the person with diabetes should expect a fulfilling life and career in whatever field of endeavor they seek. Barriers still exist in a dwindling number of professions, such as active combat military service. The future has never been brighter for the person or child with type 1 diabetes to excel in whatever life path they set upon.

3. There is no good or bad. Life is a never-ending series of grades, ratings, and report cards. Diabetes can easily get become overrun with self-judgment or the unnecessary judgment of others. No matter how well meaning, there is no morality in diabetes. This is a metabolic disorder not of a person’s choosing. It requires knowledge, experience and understanding to manage it from day to day. Diabetes care is a process, not an outcome. Since diabetes is overrun with numbers, it is a seductive trap to use words like “good” and “bad’ in association with these, either with oneself or in front of loved ones with the condition. Aim to avoid using “good” or “bad” to describe diabetes or its management. Blood sugars can be “in range”, “high” or “low” and A1C results can be “in target” or “out of target”.

4. Diabetes care is defined by one’s choices. It is said the average adult makes 35,000 discrete choices each day. Over half of these choices are habit-driven (i.e., we are not always aware of them) and the rest are consciously made. But the total number remains staggering. Our everyday lives are defined by these choices, both those we act upon and those we do not. Acts of omission weigh heavily in the world of diabetes. Just imagine the effect of not taking a scheduled dose of insulin, or not checking a blood sugar value before a critical activity. What about not eating a meal after taking a dose of rapid-acting insulin? Choices are the currency of effective blood sugar self-management.

5. Do not compare yourself to others. You are unique. We live in the post-social media world. Many of us constantly share intimate details of our everyday lives and innermost feelings online with strangers through online platforms. Whether through a post, image, or video clip, we aim for others to see us the way we wish them to, and vice-versa. The diabetes online community can be invaluable as a means of support for persons with diabetes. But it can also be viewed by some as a yardstick upon which we measure ourselves. This leads to unfair comparisons, and at times envy. It can also be a source of bullying and shaming. Everyone’s diabetes is different in thousands of ways. Avoid comparing your life (or the life of your loved one with diabetes) to others. Like the good-bad trap, comparisons typically lead to jealousy and frustration.

Having been T1 for over 50 years now and seen many changes in treatments it’s good looking back. I wish I’d been more knowledgeable about certain aspects and been treated consistently within a hospital based unit (I’ve moved a LOT in my life)
In my latest move I had to go to local unit as it was the only way I could get the Libre (it was non funded in the early days). They sorted this out but I was compelled to go on a week long DAFNE course. I was so resentful as my HBa1cs have always been good and I had no idea what they could “teach me”. But I went quietly fuming & unwilling … as it was a condition I had to sign on getting libre. Turns out it was the best thing I ever did I actually learnt so much more!!! And I was already brilliant at carb counting etc. I learnt
1. my body needed different ratios at different times of the day
2. I needed a pen with 1/2 unit dispense
3. My night time insulin wasn’t actually working for 24 hours and needed switching to levermir
And Sooooo much more.
So I’d add to the points above (having experienced all of them ) that suspend your disbelief on learning and get as much info as possible that will protect your body / sight etc xx

 

[Philippe T-L]

A few things which I think are not know by most but that I have experienced over time and shared with friends who told me it has helped them. .
1. Do not inject in the same area for years as this area will eventually be unable to dissipate your insulin to the rest of your system as well as it should.
2. If the needle hurts when touching your skin, move the needle a bit (1/2 cm or more) and try again. Some points are more sensitive than other.
3. It hurts more pushing the needle vertically (90 degrees) into your skin than pushing it at a lower angle (45 to 60 degrees).
4. Inject long acting insulin on one side of your body and the short acting insulin on the other side. I use Left for Long acting.
5. From time to time, when removing the needle from your skin, it may bleed. This is nothing you have done wrong. It just happens.
6. Do not inject through garments as this is a recipe for getting an infection. I have seen people injecting through their Jeans!

 

[Prancy]

I adore Dr. Ponder as outlined on page 1 of this thread. Dr. Ponder is known for his funny hats. He has quite a sense of humor. He and other TI Endocrinologists can be seen on videos from TCOYD (Taking Control Of Your Diabetes) on you tube and their website. It‘s informative and funny. Their conferences (live and virtual) have changed my life as a T1. I even found my local Endo who saved my life there as a speaker! He’s a noted leader in Diabetes research. I can’t say enough about their commitment to improving the lives of T1, T2 and their families.

For me, the online diabetes communities are vital for T1. The support, input, tips and general combined resources make life so much better! We can really FEEL how we are not alone. And, we can learn to accept that fatigue is a real thing. The constant demands of being T1 are daunting. With acceptance of ourselves as humans we are able to rest when we are weary and regain our strength as we are able. I will not allow T1 to define who I am.

For me, technology in the treatment of T1 is invaluable. I recall the days before CGMs were common. I was so afraid of lows that I wouldn’t even walk down the beach without my blood meter in my pocket! Lol I kept it available at all times. I now trust my CGM, enough to venture out without my meter.

I have connected with a medical team who are committed to my treatment without judgment. My CDE is a 50 year plus T1 and her input is priceless. The team helps give me confidence that I’m doing my best. I accept there will always be those who‘s numbers are better and worse than mine and not allow that get me down.

There are many good tips upthread for new T1s. I’d also add always keep a sugar source within reach like juice or candy, keep check to ensure the insulin vial is full so you don’t run out during the middle of the night, ensure you have lancets available ( I was caught without a lancet once and used a needle to prick finger! Ouch! Don’t ever do that. It was very painful. Lol If you drink alcohol, be very careful. It can cause your BG to drop rapidly. Use caution as you figure out how to manage it. Set an alarm to awake you several times during the night to check your BG after drinking, if you don’t have a CGM.

And my biggest thing to consider is to keep Ketone test sticks on hand and use them if your BG stays high (Ask your doctor for the number to watch for). Seek medical advice if you feel sick, severe nausea, body aches, or vomiting. DKA is real and can happen fast. Make someone else aware of the situation, as your judgement can become impaired and you may not be able to seek help for yourself. This happened to me years ago and it was very serious. ER, ICU, hospitalization. I recovered fine though. Just be aware.

Life as T1 is full of learning.

 

[faustus67]

Feel like I'm coming way too late to this article, but I'll throw in my comment anyway. I've been type one for 53 years now. I agree with this except for point 2 - the goal is a normal life. I think that is a seriously unrealistic goal and puts a huge amount of pressure on folk who struggle with it. I do understand the point - Diabetes does not need to limit what you can do. But I think it's a huge stretch to say that my goal is to live a "normal" life - I have a hybrid closed loop system now and it's amazing. It requires less work than anything I've had previously. Is my life "normal"? Changing infusion sets, making sure I have supplies with me whenever I go out, dealing with high and low blood sugars (even with the new system), dealing with highs and lows when ill, or when dealing with stress, and dealing with any complications. No, it's not "normal". Not even close. Can we be whoever we want to be? Mostly. I've lost friends who tried to do everything as they should and they still suffered really bad complications and died far too young. They were not able to come any where near a normal life through no fault of their own. It's a lot of work and takes a lot of effort. Saying the goal is to live a normal life is at best a pipe dream and at worst an impossible goal that adds a great deal of stress to an already stressful situation.

Of course, that is just my very humble opinion and maybe I'm way off base.

 

[In Response]

When thinking whether I live a "normal" life, I compare myself to my partner.
We went kayaking together.
I had to make sure I had my diabetes kit and reduce my basal slightly.
He ha to take his hayfever tablets and motion sickness tablets.
We both had to slather ourselves in sunscreen.

It is not "normal" to turn down basal.
And it is not "normal" to suffer seasickness on a river.
But we had a "normal" fun day.

After 20 years, diabetes has never stopped me doing what I want.
And I have no complications.
Most of my friends around my age, without diabetes eat a less varied diet, do less exercise (and consider my climbing and mountain biking too scary) and have more medical issues.
Maybe diabetes has made me more aware of my health and keeping healthy.

Do I live a "normal life"?
What is a normal life and how many people live it?

 

[faustus67]

When thinking whether I live a "normal" life, I compare myself to my partner.
We went kayaking together.
I had to make sure I had my diabetes kit and reduce my basal slightly.
He ha to take his hayfever tablets and motion sickness tablets.
We both had to slather ourselves in sunscreen.

It is not "normal" to turn down basal.
And it is not "normal" to suffer seasickness on a river.
But we had a "normal" fun day.

After 20 years, diabetes has never stopped me doing what I want.
And I have no complications.
Most of my friends around my age, without diabetes eat a less varied diet, do less exercise (and consider my climbing and mountain biking too scary) and have more medical issues.
Maybe diabetes has made me more aware of my health and keeping healthy.

Do I live a "normal life"?
What is a normal life and how many people live it?

That's fair enough - what's normal? I used to (a very long time ago) counsel teenagers with Type 1. One person was already losing his eyesight and having serious kidney issues. He would say he just wants a normal life. He died when he was 21. To tell someone with such serious complications that it is a goal of living with Type 1 to have a normal life would be cruel. You and I are fortunate in that, for whatever reason, we haven't had these complications (or at least not as badly). Some folk aren't so fortunate and I think having that as a goal fails to take their experience seriously.

 

[Zhnyaka]

Feel like I'm coming way too late to this article, but I'll throw in my comment anyway. I've been type one for 53 years now. I agree with this except for point 2 - the goal is a normal life. I think that is a seriously unrealistic goal and puts a huge amount of pressure on folk who struggle with it. I do understand the point - Diabetes does not need to limit what you can do. But I think it's a huge stretch to say that my goal is to live a "normal" life - I have a hybrid closed loop system now and it's amazing. It requires less work than anything I've had previously. Is my life "normal"? Changing infusion sets, making sure I have supplies with me whenever I go out, dealing with high and low blood sugars (even with the new system), dealing with highs and lows when ill, or when dealing with stress, and dealing with any complications. No, it's not "normal". Not even close. Can we be whoever we want to be? Mostly. I've lost friends who tried to do everything as they should and they still suffered really bad complications and died far too young. They were not able to come any where near a normal life through no fault of their own. It's a lot of work and takes a lot of effort. Saying the goal is to live a normal life is at best a pipe dream and at worst an impossible goal that adds a great deal of stress to an already stressful situation.

Of course, that is just my very humble opinion and maybe I'm way off base.

It seems to me that the problem is that by "normal life" we mean the best of outcomes, a la a good job, a happy family, etc., we do not take the option of starving to death, going to prison, dying from a drug overdose, have no alcoholics the family, dementia, etc. Let's be honest, this option is quite rare even without diabetes. We look at those who are better than us and envy them, not noticing that we are probably better than many others. Finding something good in every day is really difficult, but bathing in your suffering is not the way out. My life wouldn't be "normal" even without diabetes, so diabetes is not the biggest of my problems, even despite the complications. Of course, it is sometimes frightening or annoying, but there is no point in dwelling on it.

 

[Juicyj]

I think it goes without saying that 'normal' isn't an existence we can identify with, what we can aim for at best is to 'have a life' so hold down a job, travel, enjoy hobbies, have a family, but none of that is achievable without careful planning and preparation, so in that sense 'normal' is the closest way to identify with 'having a life'. I am 12 years since diagnosed, life is not normal, but I am living a life and try to without affecting those around me, I run a business, have had a child, travel and ski each year, run 3-4 times a week, go to festivals, t1d hasn't stopped me but has made me cautious about how I approach life to ensure I am prepared and can navigate it as successfully as I can. I also think that at diagnosis if I was told I would still be able to achieve what I wanted in life, it would of set me up in a better position to face obstacles, however my nurse at diagnosis was quite negative and painted a bleak existence and from diagnosis I spiralled into a very dark place, if the message at diagnosis had been upbeat and don't let this stop you then I think I would of had better resilience to face the darker times. So saying you can live a 'normal life' is a sort of reassurance we can live and function with t1d, it's just nuances with language and interpretation.

 

[rachelmc4]

This is helpful, thank you

 

[IanA123]

Diagnosed April 12th 1994, yepbremember the date. Sent home from gp and told to await a visit from a dsn. Dsn arrived with insulin and 3 leaflets, was told how-to inject, prick finger and compare against side of strip tub. After 30mins she left and I was left to get on with it.
Took a year to see a consultant, even then that was a fight. Realised then that I am in this alone and basically did not bother with diabetic support for 20yrs. Just did my yearly review and got on with it. Currently under the diabetes clinic at Newcastle now after a huge **** up by gp practice swapping my insulin to analog that did not work. To be fair they are brilliant and have spent time explaining everything I should have known 30yrs ago. Hba1c was never above 6 in all the years I was solo, currently at 7.4 but clinic are happy with that as I am 50+ now and they can see everything I do on libre app.

 

[Marta776]

Thank you for sharing this heartfelt excerpt from Stephen Ponder's book. It is a powerful message that every person with type 1 diabetes who has recently been diagnosed should hear. These five key points provide much-needed guidance and reassurance, especially emphasizing that no one is to blame and that a full, normal life is achievable. Each person's journey with diabetes is unique and it is important to focus on self-care without guilt or unnecessary comparisons.