Life after a diagnosis can be overwhelming. This guide explores the crucial aspects of managing and adapting to life when you are newly diagnosed with Type 1 Diabetes. Along with insights and practical tips to empower you on your journey.
Receiving a diagnosis of Type 1 Diabetes can be overwhelming, I know that was certainly how we all felt after my daughter’s diagnosis back in 2020. As parents we felt like the world had completely turned on its head and leaving that hospital room the emotions were very much like when we left with her as a newborn baby.
However, understanding the condition and learning how to manage it is crucial for maintaining a healthy and fulfilling life. This guide to being newly diagnosed from a parent’s perspective is designed to provide you with essential information and practical tips we learnt along the way, to navigate life with Type 1 Diabetes.
What is Type 1 Diabetes?
Type 1 diabetes is a chronic life-long condition characterised by the inability of the pancreas to produce insulin. Insulin is a hormone that plays a crucial role in regulating blood sugar (glucose) levels. Without insulin, the body cannot effectively use the glucose derived from the food we eat for energy.
Here’s a breakdown of some of the key aspects of Type 1 diabetes:
An Autoimmune Condition
Type 1 diabetes is an autoimmune disease. This means that the body’s immune system, which normally protects against harmful substances like bacteria and viruses, mistakenly attacks and destroys the insulin-producing beta cells in the pancreas.
Insulin Deficiency
Due to the immune system’s attack, people with Type 1 diabetes have little to no insulin production. Insufficient insulin leads to an accumulation of glucose in the bloodstream, causing high blood sugar levels.
Onset
Type 1 diabetes often begins in childhood or young adults, though it can develop at any age. It typically appears suddenly, and individuals may experience symptoms such as increased thirst, frequent urination, unexplained weight loss, and extreme hunger.
Management
Managing Type 1 diabetes involves replacing insulin through regular injections or an insulin pump. The goal is to maintain blood sugar levels within a target range to prevent both short-term complications (such as hyperglycemia or hypoglycemia) and long-term complications (such as damage to the eyes, kidneys, and nerves).
Monitoring
People with Type 1 diabetes need to regularly monitor their blood sugar levels using a glucose meter or wearing a Continuous Glucose Monitor (CGM) on their body. This helps them make informed decisions about insulin doses, diet, and physical activity.
Read more about type 1 diabetes in TYPE 1 DIABETES DEMYSTIFIED
How is Type 1 diabetes different from type 2 diabetes
These 2 main types of Diabetes are often the ones that cause the most confusion. Type 1 diabetes and Type 2 diabetes are two distinct forms of diabetes with different causes, onset patterns, and treatment approaches.
Here are the key differences between the two:
Cause
Type 1 Diabetes – An autoimmune condition where the body’s immune system mistakenly attacks and destroys the insulin-producing beta cells in the pancreas.
The exact cause of this immune response is not fully understood, but genetic and environmental factors are believed to play a role.
Type 2 Diabetes – This form of diabetes is characterised by insulin resistance, where the body’s cells do not respond effectively to insulin.
Over time, the pancreas may also lose its ability to produce enough insulin. Genetics, lifestyle factors and age contribute to the development of Type 2 diabetes.
Onset and Age
Type 1 Diabetes – It often begins in childhood or adolescence, though it can occur at any age.
Onset is usually rapid and symptoms can develop quickly.
Type 2 Diabetes – It typically develops in adults, although it is becoming more common in younger populations due to rising rates of obesity and sedentary lifestyles.
Onset is generally gradual, and symptoms may not be as pronounced initially.
Insulin Production
Type 1 Diabetes – There is a complete lack of insulin production, requiring individuals to take insulin injections or use an insulin pump for survival.
Type 2 Diabetes – Initially, there may be enough insulin produced, but the body’s cells are resistant to its effects. Over time, insulin production may decrease, and some individuals with Type 2 diabetes may also require insulin therapy.
Treatment
Type 1 Diabetes – Insulin therapy is the main treatment. This can be administered through multiple daily injections or an insulin pump.
Type 2 Diabetes – Treatment may involve lifestyle modifications (diet and exercise), oral medications, and in some cases, insulin therapy. Medications may help improve insulin sensitivity, stimulate insulin production, or reduce glucose absorption in the digestive tract.
Risk Factors
Type 1 Diabetes – It is not linked to lifestyle factors and is not preventable. Family members and genetic factors may play a role.
Type 2 Diabetes: – Lifestyle factors, such as obesity, physical inactivity, and poor diet, contribute significantly. Genetics also play a role, and there may be a family history of Type 2 diabetes.
Understanding these differences is crucial for accurate diagnosis and appropriate management of each type of diabetes. It’s important to note that there are other, less common forms of diabetes, such as gestational diabetes and monogenic diabetes, each with its own characteristics and considerations.
Understanding the Diagnosis
Understanding how important it is to spot diabetes in the early stages hit home for us when my daughter was finally diagnosed. It highlighted how unaware of the symptoms we actually were. And if you (like me) are unsure don’t wait! Always seek medical advice as it’s crucial for timely diagnosis and intervention.
For us, we were delayed in getting a diagnosis and my daughter was already in diabetic ketoacidosis, which required emergency medical attention. Once she was stabilised then the crash course in diabetes management for our family began. With support, we had to figure out the right foods, adjust daily activities, and basically reshape family life. It wasn’t just about her – it was about all of us making changes together.
Navigating Diabetes Management
Navigating diabetes management from the very beginning not only makes daily life better but also cuts down the chances of serious complications in the long run. However, it’s crucial to recognize that this adjustment doesn’t happen overnight; it takes time to wrap your head around it. And let’s not downplay the emotional toll that comes with a new diabetes diagnosis – it can be quite a rollercoaster and acknowledging that is a crucial part of the journey.
In this section, I’ll share with you some more practical tips and things that helped us as a family in the early days of being newly diagnosed with type 1 diabetes. The journey can feel overwhelming, but practical experiences can make a difference and time really does lessen the edges of it.
Build a Support Team
The first and most important aspect is building a support system. You are not alone and as scary and daunting as it is when you are newly diagnosed with type 1 diabetes finding your network can be a lifeline. I know we are all different and initially, I didn’t really want to reach out to anyone whilst I was working through organising, understanding and trying to home it all together.
However, I realised that I needed help and I needed to talk to others who understood without explanation and questions that I still couldn’t answer. This is where the diabetes team at the hospital and support networks played a huge role.
We are very lucky in the UK to have access to a variety of NHS diabetic specialist teams, along with some brilliant charities, local support groups and specialist support forums online or on social media. I will provide links to some of these in the resources below. But also feel free to add a comment in the box below. I’d love to talk to you and help in any way that I can.
Involve Family and Friends
Educate those around you – family, friends, colleagues – about Type 1 diabetes. The more they understand, the better they can support you. Share your experiences, teach them how to recognise and respond to potential issues, and involve them in your journey.
Embrace the Learning Curve
In the beginning, everything may seem like a whirlwind of information – insulin doses, blood sugar checks, meal planning. But you need to embrace the learning curve and be patient with yourself. It’s okay not to have everything figured out from day one. There is so much to take on board so give yourself time.
Don’t Hesitate to Ask Questions
Your healthcare provider is there to guide you. Don’t hesitate to ask questions, no matter how small they may seem. Understanding the ‘why’ behind certain actions and decisions can help you feel more in control and confident in managing diabetes.
They can also help you in the early days to feel more confident in making decisions around insulin dosing, ratios, correction factors etc. Ultimately we have to take this responsibility for ourselves but by asking the questions you can become more empowered to move into this space.
Create a Routine
Establishing a daily routine can bring a sense of stability during these early days. And in fact is something I have found continues to be beneficial. The lack of spontaneity can be a hard adjustment to have to make and quite frankly there are times when I still find it irritating. But routine really is diabetes’s best friend.
Try to set regular times for meals, insulin doses, walks or exercise and blood sugar checks. Consistency makes it easier to track patterns and adjust your management plan as needed.
Learn from Blood Sugar Readings
Your blood sugar readings are like a compass guiding your diabetes management. Take the time to understand how different factors affect your levels – meals, exercise, stress, hormones and even the weather. This firsthand knowledge will empower you to make informed decisions about your lifestyle, day-to-day treatment and any possible lifestyle changes you may decide to implement.
For tips on ways to do this check out my article on our diabetes management toolkit
Our Diabetes Management Toolkit
Living with and/or caring for a person with type 1 diabetes is demanding, which is why it’s so important to create a diabetes management toolkit that can help you every day.
Explore Technology and Tools
Technology has come a long way in diabetes management. In the UK Type 1 diabetics have access to CGMs, Insulin pumps and more recently closed loop insulin delivery systems.
Investigate continuous glucose monitors (CGMs), insulin pumps, and mobile apps that can simplify certain aspects of your routine. These tools can enhance your understanding of your condition and make daily management more streamlined. Your NHS team can help you with this.
Craft a Diabetes-Friendly Diet
Discover the principles of a balanced and healthy life. I have tons of resources on WHK that can help you. Whilst I appreciate diabetes is not a one-size-fits-all model, the information and changes we made to our diet have significantly helped us with blood glucose levels, HbA1c and more importantly time in range.
WHK has a wealth of practical tips, information, and deliciously easy recipes to help you better understand the impact of carbohydrates on blood sugar levels and make choosing a healthy diet a simple task.
Celebrate Small Victories
Managing diabetes is a series of small victories. Celebrate when you successfully navigate a challenging day, achieve a stable blood sugar reading, or master a new aspect of your diabetes care routine. Recognising these victories rather than what loitering in the depths of went wrong, can boost morale and motivation.
Be Kind to Yourself
There will be tough days, and that’s okay. The most important thing is to remember to be kind to yourself and acknowledge that diabetes management is a continuous journey of adjustment and learning. Allow yourself the grace to adapt and grow over time.
Taking Control of Your Type 1 Diabetes Journey
Remember, the early days of being newly diagnosed with type 1 diabetes are a period of adaptation and learning. With time, you’ll become more confident in managing this and find your way of doing things that work for you and your lifestyle. As time passes, what initially felt overwhelming will slowly integrate into your daily life, becoming less intense and more manageable.
Embrace the learning curve and be patient with yourself. Building a strong support network, including the diabetes community and your loved ones, is crucial. Establishing a routine brings stability amidst uncertainties, and celebrating small victories boosts morale.
But most importantly be kind to yourself on those tough days – managing diabetes is a continuous learning process. Find a support group or online community. Involve your family network, and trust your healthcare team for personalised guidance. With time, what seems overwhelming initially slowly transforms into a manageable part of your daily life. You’re not alone in this journey, and as you adapt and celebrate milestones, you’ll discover the strength to thrive with Type 1 diabetes.
Feel free to drop a comment down below. I’m here, and I get it.
Resources
There is a wealth of information out there. Here are some resources that we have found useful along the way:
Type 1 diabetes in adults: diagnosis and management – National Institute for Health and Care Excellence
Diabetes (type 1 and type 2) in children and young people: diagnosis and management – National Institute for Health and Care Excellence
JDRF – Juvenile diabetes research foundation
The information provided here is for guidance purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult with your healthcare provider for personalised guidance and recommendations tailored to your specific health condition and needs.
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