Disclaimer : Please remember while you are reading this, nothing you read on the blog americanwife.blog should be considered an advice medical or otherwise. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. This blog is just my experience on living with Type 1 Diabetes for the last 3 years.
Sitting lifeless on a sofa in Delhi I called my mother, “Mumma, something is wrong with me. I need to go to doctor right now”.
She wasn’t expecting to be disturbed like this during her dinner prep time but probably she sensed the pain in my voice. She called doctor for immediate appointment, changed out of her night suit, took money and said ‘let’s go’.
I was dragging my feet behind her and was thinking the whole time that probably I was a very funny sight for people: a tall frail looking woman dragging herself behind her oldish mother. A couple of blood tests and merely 15 hours afterwards, I found out that I have Diabetes. I was in shock and kept questioning myself – “how can a healthy, regularish gym goer who eats mindfully get diabetes?
But the shock was not over.
Few more tests, couple of thousand rupees and 3 days later I was given a new identity: I was a Type 1 Diabetic. They called it LADA (Latent autoimmune diabetes in adults) as if a fancy word made any difference to the fact that I now was insulin dependent for the rest of my life.
Accepting this new title was not easy at all however there was no option but to accept it. What followed after that realization was a big uphill hike with many difficult and many amazing revelations about my own self.
Its ben 3 plus years since that fateful night in Delhi. These last 3 years made me realize many things but most of all this – I have a lifelong condition and it was not my fault but I can still choose to live my life with complete excitement in the way I want. I now live in New York City with my husband and can proudly say that I am loving each day of my life. The learnings have been immense and with this blog I am hoping to give something to you; call it a ray of hope, an insight into my life or a starter guide to learning to live with Type 1 Diabetes.
Let us dive into the 11 lessons from living with Type 1 Diabetes
- Insulin is the lifeline
The very first moment of diagnoses taught me that there is no me without daily shots of insulin. While my family was finding it hard to accept, I was on YouTube learning ‘how to inject’. All this was not easy but I was desperate for feeling like myself again so I started a lifelong commitment with Insulin and test strips. The sooner I accepted this; the easier life became.
- The body changes
For as long as I remember, I have been a frequent Gym goer, hiker and a dancer (only in parties though). Something strange started to take place months before my diagnoses: I started to feel tired all the time, my body looked frail as hell and there was literally no energy left for anything. So, it was a sort of relief when I found out that it was due to type 1 Diabetes. I assumed that injecting insulin will immediately take me back to my stamina and that was the stupidest assumption I made.
Everything changed and I mean everything. After the curtain raiser, I tried resuming back to a normal lifestyle and things surprised me as hell. A normal walk around the block became tough, I could not even imagine doing one Yoga pose but I persevered and stayed at it. It took long 3 years and definitely was a very slow process but now I get thrilled when I am able to work out for 40 plus minutes in the gym without going low or high.[S1]
Recently I went for a hike and though I struggled, I was still thrilled that I was able to do it. Still a long way to go and some day, I will be able to run a marathon (fingers crossed)
- Daily meals are nothing less than a scientific experiment
This one was the most difficult to understand and accept. Though I have always been health conscience but this was different. If the food I am eating & the insulin I am injecting does not match then I go either high or low. So, everything became super important and scientific.
Pretty much from the beginning I started to Greek out on this. What followed was – many manual blood sugar tests to see before and after of a certain meal, understanding carb counts and recording their effects in the body, making changes to my doses as per last days readings and trying to get better hba1c results.
I also made many mistakes in the beginning thinking that I can eat anything and inject more BUT does this kind of thing works for anyone in life? Then why would it work for someone with Type 1?
- Never leave house without the stash, never
The stash is the holy bag/ wallet/ back pocket of jeans. There are many diabetic supplies – my testing kit, something sweet to treat lows and my insulin pen if I am going to be out past meal time or something sweet and a test strip if going just nearby for a couple of hours or just something sweet if going for a walk. Initially I used to feel overburdened with this but now it kind of gives a celebrity feeling that I have this bag and I can probably shoot an episode of “what’s in my bag” but I wonder if Bazaar will post it on their channel?
- Be prepared for a low
No matter how prepared I am or how carefully I am planning my meals, from time to time I still go low. After having couple of near faint experiences where I was going low and had no supply with me, I realized that I cannot take that risk in life. Sometimes, it means shopping for more quick sugar snacks than I ever need and testing more than enough number of times.
It’s always better to be safe than worry.
A funny story: when I was initially diagnosed, I used to only have episodes of low during the middle of night. It was hard to think at that time so most of the time I used to stumble from bed, rush to fridge and eat whatever I could grab. This would of course cause me to go very high the next morning. The sad part was, I was not happy eating just about everything and I would crib not eating “something tasty” when I had the chance. So, I made a list of things that I could eat when I go low. It wasn’t the best approach as really you should just eat something within 15 grams carbs first and then top up with another 15 grams if needed. But the initial days got easier with this funny list which had things like bread jam, Oreo with milk, cake, chocolate and more silly basic stuff.
- Be patient during a high
Ok let’s talk about something that I literally hate in my Type 1 life: the episodes of high. But again, like having an episode of low, this is also inevitable. We are humans and we go through many things that cause us to go high.
I have written a post on ‘How I manage days with High Blood Sugar as Type 1 Diabetic’ and you can check that here . There is one thing which is above all: I learned that I cannot go crazy sad when this happens.
The day I was diagnosed with Diabetes, I was at the medical store purchasing medicines and I must have looked really sad as the person at store tried to calm me down. He said its common to have diabetes these days and asked me to not worry as that would just increase my blood sugar count. Me or that guy did not know at that time that I have type 1 diabetes and not type 2 which can be managed with medicines but his comment made me relax a bit. Thank you to that medical store person.
I still follow his advice and try to stay patient and FYI, stress is bad for blood sugar.
Read my post on – How I Manage days With High Blood Sugar as a Type I Diabetic
- Daily monitoring is crucial (This changed my life)
I have been a planner my whole life. As a child, I was making time tables for school studies, later it was about weight loss then it was about the work tasks etc. So, making this a part of my life was not new. Having said that, I cannot emphasize enough on daily monitoring plus recording things like blood sugar, insulin doses and level of activities. I agree that this can get daunting and it look me a while to understand this system myself but this will help you understand your condition in a much deeper level. If you want, you are free to use my template or you can create something similar of your own. Whatever works best for you is best for you.
- Kidney, liver & eyes become important, overnight
When was the last time you actively thought about these body parts? I almost never did unless I had something going on like a medical test or some form of sickness.
In the first visit when I was finally diagnosed as Type 1 Diabetes, I was told by doctor that I cannot take the wellbeing of these vital parts lightly. I was asked to go for a yearly checkup for eyes, have by yearly blood tests for kidney and liver function and make sure to check my feet on regular basis.
It all made so much sense to me as I had seen a family relative losing her leg due to diabetes complication and that incident not only changed her life but changed so many people’s lives overnight. She is fine now and I have never seen anyone adjusting so quickly to the new reality. Kudos to her.
- Learn to ask for help
When I was diagnosed, I was working at a middle management position handing a team of 50 people. I was a tough person around my team and asking for help related to heath issues was a big no-no in my mind. I felt this was a sign of weakness and my next promotion would halt if people will think that I constantly need help (which I needed initially).
But at the same time, a voice started playing in my head asking me to re-evaluate my life goals. This was the time when I started to question if I got the Type 1 diabetes due to all the stressful encounters at office, sleepless nights working on projects or by managing office politics? These seemed not so important to me now so after a few bad incidents where I was feeling like fainting in a meeting room, I started asking for help. To my surprise, there were people who were more than happy to help. My boss who was also my friend, created a stash in her office cupboard for me which had supplies from candies, chocolates to sugary drinks. I am so thankful to all these people who came to my rescue at one or another time and there were many small and big incidents in the first year. Of course, there were others who would causally ask me “How can you have type 1 diabetes? Doesn’t that happen to children? “
- Become thick to people’s stupid comments & perceptions
Okay so this one was tough and it still irks me sometimes. There were people all around telling me how can I cure Type 1 Diabetes by walking, not eating sugar or by going for yoga retreats. I would tell them that this is an auto immune disorder and as of now, it’s not curable but they just won’t budge.
My poor dad is still one of those who is not able to accept that I have a lifelong condition. He still is finding cure. All the best dad.
But developing a thick skin is very important. We cannot get worked up every time someone makes a comment like these. In all fairness, there is not much information on Type 1 out there so people just don’t know. I myself had very little knowledge before I was diagnosed.
- Live the life on your terms
I agree, I have a lifelong auto immune disorder which gets on me from time to time but it’s still my life and I get to decide how I want to live it. Yes, things and dreams changed a bit like going for a marathon does not only involve training but many more steps and years of planning but it will still happen someday. I will still plan to go for a long bicycle trip from Delhi to Ladakh, someday.
And there are new dreams now which came after realizing that I have a new leaf on life. Dreams like helping others with type 1 diabetes, creating awareness for Type 1 and living each day with exuberance as I have a reminder every few hours in the form of insulin pen that life is fragile.
No matter what is your dream, it’s yours and we must save it.
“You got a dream… You gotta protect it. People can’t do somethin’ themselves, they wanna tell you you can’t do it. If you want somethin’, go get it. Period.”Pursuit of Happiness.