As I struggle to memorize Tuhfatul Atfaal with a tantrumy toddler, there have been additional struggles too. I have been diagnosed with type 1.5 diabetes or LADA. Who knew that existed? I certainly didn’t and I have been a Biology student with a lot of medical background until university. How come nobody talked about it? I have nooo idea.
I thought I would share my diagnosis story in hopes to let anyone out there with LADA know that you are not alone and in case you have somebody in your life with LADA (Type 1.5 diabetes) then perhaps you must help them a bit with an ounce of understanding about their situation. Or if there’s something funny going on with your blood sugars, you can push your family doctor to open up their eyes and not misdiagnose you because that is exactly what happened to me and a lot of people who are eventually diagnosed with type 1.5.
LADA or Type 1.5 is a type of diabetes in which initially your body behaves like a Type 2 diabetic (i.e. responds well to Type 2 diabetes medications) but then settles down with Type 1-like body symptoms eventually pushing your body towards insulin-therapy. What is interesting is that patients who go through this already know there’s something off but obviously they believe the experts (the physicians). If you experience weight loss or out of control blood sugar levels despite you walking on egg-shells when it comes to doing everything ‘right’ to control it, it is time to talk to your family doctor to refer you to an endocrinologist. Nothing to be scared about. You can actually live a better, guilt-free life with type 1.5 diabetes vs. type 2. Alhamdolilah.
I did not have gestational diabetes but I had a small 2-minute serious conversation with my gynecologist just to keep an eye out on my carb intake as my sugar levels were just borderline. I was least bothered because I was already having a tough pregnancy with a lot of throwing up and nausea even beyond 7 month mark and I hardly had had any appetite for anything. So if my body could handle any food, I was going to give it just that just to survive. Anyway, 11 months post-partum, with a full onset of my son’s teething, sleeping and eating problems, I was as sleepless as a mum of newborn twins. I hadn’t done a routine regular check up with blood tests because my son had been a handful and ever since he was a (full term!?) NICU baby, I just couldn’t focus on me, myself. It was always about him. So subhanAllah, naturally when I just did the routine tests, BAM! I was diagnosed with type 2 Diabetes. I was beyond shocked as I wasn’t technically obese and I did not really have a sweet tooth. I had a bit of post-partum weight but that was expected as I didn’t get a chance to focus on my health and exercise regimen. My family doctor literally spent 4 minutes telling me that I will be on Metformin and I will be assigned a diabetic educator so that she can follow up with me in the initial stages. The diabetic educator had terrible bedside manner and horrified me to the point of tears. It was the worst day of my life because all she talked about was the complications of Diabetes such as blindness. And to top of it off, she told me that the medication (Metformin) that I was supposed to take has a risk of causing heart attack!Then she said, ‘Well, let’s calculate your risk!’ She pulled up a website with a calculator and asked me my age. She chuckled. ‘Oh well, the calculator doesn’t work for someone your age!’ I concluded from the meeting that I was lucky as I was of a fortunate gender (female) because heart attack hits men more. Yet, typically the likelihood of heart attack doubles after 10 years of diagnosis. I calculated my age in 10 years time. I would barely be 36 years old. My heart panicked. I was ushered off with a glucometer, a prescription and with a truckload of thoughts about my son…what would happen to my 11-month old son if my disease worsened rapidly? Didn’t I want to memorize the Quraan? My God! I had a few years left before I could turn blind. These thoughts plagued me but I kept a straight face in front of family when telling them about my diagnosis. I got tears and pats on the back. What I didn’t get was somebody to tell me that I would live long enough for my son to be married.
Well, nobody can give you that guarantee but I really wanted to live another 20 years at least without health complications.
The regular Metformin gave me the worst side effects of nausea and vomitting. I would have this cloudy fog over my brain. I couldn’t think straight as I would stonily stare at my son cruising for the first time. I still feel that I was robbed of my son’s many firsts just because I couldn’t be mentally present to enjoy them. I knew I wasn’t well so I contacted my diabetes educator who prescribed the slow-release form of Metformin. Things at the Metformin-end got better. Other trials worsened but alhamdolilah I was blessed to be resilient all this while.
2015-2016 was the most stressful period of my life and my son’s sleeping patterns were still at their worst. I was still sleepless quite literally. Come January 2016, I had gone in emergency because my flu had just not gotten better and I felt really ill. They checked my blood sugar levels and were horrified. In my entire story, I have had nurses run to me in a hurry to inform me of my high blood sugars. Almost always. SubhanAllah. My blood sugar levels had sky-rocketed and my GP was sent an urgent letter to get my blood work done. From there on, it got worse. They put me on Farxiga with Metformin. They put me on full dose of Metformin. They put me on Janumet. Nothing would bring down my sugar levels at all. They had a nice time experimenting with me when I was constantly telling them that I wasn’t eating as much and led an active life yet my blood sugar levels were extremely high.
I hopped across the pond and came back to lovely Canada where they, unlike the NHS, have wonderful healthcare facilities.
In just one quick appointment with the family doctor, she saw my situation was serious. I was urgently referred to an Endocrinologist and had to wait for 4 months (which is quite less when it comes to the 8 month-long waiting lists). He went through more tests with me. In a very short span of time(4-5 months) I had lost 20kgs. Another shock for all doctors but clearly indicating that my body was leaning more towards a Type 1 diabetic. How can somebody lose that much weight without any effort? That was a red flag for my Endocrinologist. Of course, it was for me too but it didn’t click back then. But primarily I was asymptomatic as in no thirst issues and bathroom runs. I was fine except I looked severely malnutritioned for a tall woman.
I had been booked in with the Health Management Nurse just for basic routine help with my diabetes management. She checked my levels ‘just like that’ and she panicked. Again, she went running to my family doctor who was on duty in the same clinic. Basically my appointment with her was taken over by the family doctor. She said for typically people with my levels, an ambulance is called and the doctors in emergency pump them with insulin. An urgent fax was sent to the Endocrinologist to hurry up and make a final decision as to whether start me on insulin shots. Within few hours, I get calls from Diabetes Health clinics and God knows from all those specialized clinics asking me to book appointments with different health professionals.
Lo and behold! I was actually not even Type 1 but rather Type 1.5 Diabetic. Yes it wasn’t as common but it was like Type 1 with a later onset. Then came to my mind a memory of when I was only 12 years old about my favourite Computer teacher who suddenly disappeared for a while.Later we had a substitute teacher come and tell us that our Computer teacher had been diagnosed with type 1 diabetes. She must’ve been my age with a very young child. And she too had lost a lot of weight. It was all making sense.
I have been on Lantus and Rapid acting Insulin for the last 5 days. I have been having lows in which my hands shake as that of a person of Parkinson’s disease. I couldn’t even retrieve a mere library card from my wallet. I have had near-fainting experiences and subhanAllah they are scary. Surprisingly, those are instances when my son is the most difficult. It is nothing but a test. Poking myself more than 4 times to check blood sugar levels and then 4 times for insulin. It is truly an added hassle and personally I have things to do! You know like manage my toddler’s eating, sleeping, and behaviour issues in addition to his stubborness towards toilet-training. Or the fact that I have been pestered to worry about my son even having speech therapy issues. Or maybe because I am determined to focus on memorizing Tuhfatul Atfaal and aim on professionally training to become a Quraan teacher. I don’t know but I certainly have things to do. I can’t afford to rest in a middle of a tantrum when I my body’s experiencing a low. I can’t afford to forget about my son even for a few minutes when in reality I need to do a ton of calculations of the prospective meal I’m going to have and poke myself a few times just in case I have to make a correction in my insulin dosage. SubhanAllah. How we take for granted our beautiful hormones!
I am lagging far far behind in every single thing I want to do in life for the next life. But certainly I know Allah swt blessed me with immense courage to keep fighting back and even though nothing seems to be going right, the following is an apt reminder:
And We will surely test you with something of fear and hunger and a loss of wealth and lives and fruits, but give good tidings to the patient, Who, when disaster strikes them, say, “Indeed we belong to Allah , and indeed to Him we will return.”Those are the ones upon whom are blessings from their Lord and mercy. And it is those who are the [rightly] guided.
[Soorat’l Baqarah, ayah 155-157]
I feel I am constantly living in a state of fear. I have to starve myself at times and other times I’m always starving. I have had to take time off work. My life seems limited in every possible way. My efforts seem so insignificant in the face of challenges of the past, present and future. And besides those surface-level tests, I am going through some deeper challenges. Yet, what a beautiful ayah. A reminder that ultimately I belong to Him and every gift from Him is an amanah, a trust. It may be taken away because it is His anyway. He has loaned these things to us but He can always take them back because in the end, we all mortals and we are going to die. And that, that is a bigger reality than all the harsher realities that have hit us. We must hold onto patience for it will be that boat that takes us safely to Jannah inshaa’Allah. Allah swt then will send blessings upon such patient beings! Allah swt, the Lord of the Worlds! Allah swt will send special mercy upon them! Allah swt will send special guidance to them specifically! All they have to internalize in their tough times that this dunia is just a temporary stop anyway…so what if they are being tested? It doesn’t matter…because we have Allah swt to look forward to…His Pleasure.
I’ve had to remind myself with this ayah so many times as I inject myself. Every wince and every heartache and this ayah works like a balm. Truly, Quraan is a gift from our Lord. How little we give thanks for it!
I truly pray that He empowers us, especially women, to aim high for akhirah by utilizing this dunia productively. And that as we enter a busy phase in our lives, we learn to take a deep breath for His Sake as we too are responsible for our well-being.
My loved ones asked me whether it’s for life. Whether if there was ever going to be a slight possibility that I could get off insulin. They asked hoping against hope that I would say with a unwavering confidence that I would actually be able to get off insulin. That it’s just going to be a temporary thing you know. Soon beta cells of my pancreas will wake up and produce good quality insulin.
How could I tell them that my beta cells are hibernating out of tiredness. That in addition to that, those which were sadly working are having to fight a civil war for it is very much an autoimmune disease. That diabetes type 1 or 1.5 is a chronic illness. It wasn’t a headache that would be cured by a one-time pill. As much as I believe that Allah swt is capable of reversing all illnesses in the world, I know it is a struggle I would have to keep up with everyday.
Every day is such a battle that if a person without type 1 diabetes would ever understand what they had as a gift in terms of a working pancreas then they would pray extra nawaafil in thanks to Allah swt for every morsel they ingest! And to Allah swt we return our affairs! We have so much to be thankful for! And a lot can be achieved with a positive attitude and good hopes in Allah swt! Last thing you want is stress to mess up your glucose levels.
I have decided to increase awareness about life with type 1.5 Diabetes inshaa’Allah and I pray that if anyone is diagnosed with it, they have strength to keep moving forward inshaa’Allah.
With a beautiful dhikr, I end this post: