Shakira Chahal is from Dumbarton, and gets admitted to Royal Alexandria, Paisley, just outside of Glasgow in Scotland. She is 23 years old, a mother and had an adolescent aged diagnosis to type 1 diabetes, at 17 years old. Shakira has very bravely and very openly shared about what has been a difficult period in health for her, and her feelings towards the matter as to why. As we say at DiAthlete: type 1 diabetes education is essential, and needs to come with positive encouragement.

Shakira:

“I’ve only been living with type 1 diabetes for 6 years and in that period of time my health has changed drastically.

At 17 I was free to come and go as I pleased, now at 23 I’m restricted as to how long and far I go. Although I can’t blame the consultants all for this, I do believe that had the proper education and support been given then a lot of problems and hospital admissions could have been avoided: I think personally that the same approach isn’t given to those who have been diagnosed later in life as to those who diagnosed under paediatric care. Due to this, many young people are scared or very hesitant on coming forward to their consultants with problems or questions that they may have, therefore resulting in many being uneducated and unaware as to just how serious their illness actually is until it’s too late and the damage is already done.

In December 2011 I was admitted to hospital for the night (for something unrelated to diabetes as I hadn’t yet been diagnosed) and my blood sugars were checked as part of the routine on admittance, and came back as high. They were checked routinely throughout the night and remained high the whole time. Upon discharged I was told condescendingly that I “better get checked for diabetes,” being only 17 I thought “aye no bother.”

Two months passed and my mum noticed how lethargic and thirsty I became. I was also running to the toilet every 2 minutes to pee. She advised that I go and get my blood sugars checked, Lloyds pharmacy had just started doing the finger pricking test for diabetes. I fasted the night before and made my way down to be tested.

My test came back as over 19 mmol/l and after protesting that I had fasted the pharmacist phoned my Gp who then thought it would be best I made my way to the minor injuries unit to be checked there. I spent the whole day getting bloods taken and put on fluids, it was Valentine’s Day. I was then later sent home and told to return the next day to speak to a diabetic consultant.

The next day I was briefly told what diabetes was and how it “may” affect me, I was put on metformin and gliazide, told to test my blood sugars over the weekend to see how they reacted to the medication. Monday came and my blood sugars still hadn’t settled, so was then changed onto insulin, novomix and solostar and told again to return a few days later. Still sitting high my blood sugars hadn’t changed even with the insulin, therefore I was then changed again onto Novoradpid at mealtimes and Levemir as the solostar was very nippy at injection sites. Slowly my sugars began to regulate and I started to feel slightly normal again.

It was finally then that I was diagnosed with type 1 diabetes.

At the end of February 2012 I found out I was expecting, not ideal for a newly diagnosed type 1. My pregnancy to begin with was great, baby was developing nicely and I felt so much better than before and because of this I was naive to think I didn’t need my insulin all the time. I would eat what I wanted and test my sugars occasionally, filling in my diary with good acceptable numbers unaware that they were able to tell how your overall control was with your HBA1C. As I was a type 1 my pregnancy was monitored closely which meant weekly checks and two weekly scans, my A1C was getting higher and started to raise concerns for the consultants. At 26 weeks it was agreed that I would undergo an elected c-section at 36 weeks. Due to my elevated blood sugar, it was explained to me that there could be complications with the baby and at any point I could miscarry as having uncontrolled blood sugars led to many birth defects. At 11:23 On the 17th of October 2012 my beautiful bundle of joy was born; however, due to breathing complications he was rushed away to the special care baby unit. I didn’t get to hold him. Instead I had to settle for just a little touch of his hand later that night through the incubator.

My son spent a week in special care for breathing and eating difficulties. I was told that because he was a baby of a diabetic mother with uncontrolled blood sugars he had some problems with getting feeds. I couldn’t help but blame myself for this as I didn’t keep on top of diabetes at the start of my pregnancy, just towards the end I would test 4 times a day and religiously took my insulin. After he was discharged my focus was solely on him and I started to let my diabetes slip again. I went back to missing doses and checking here and there. Still unaware as to the amount of damage I was actually doing to my body.

Now and again I would be admitted to hospital with elevated blood sugars and ketones, I still didn’t know what this meant and brushed it off whenever I got back out of hospital. I managed to get myself a job and worked hard, however, working in a busy restaurant/ bar I was on my feet constantly and it started to take its toll. Hospital admissions became more frequent and I noticed I was getting worse with each admission. I would become sick and unable to breathe properly. This was DKA, I would be admitted to HDU (high dependency unit) where I would be administered for anti sickness and fluids.

Due to this I would miss shifts and be unable to finish ones, I became unreliable and had to give up working in such a demanding job. I started to take my insulin and routinely check my blood sugars, although this didn’t seem to help. I was still ending up being violently sick and suffering from excruciating abdominal pain. I would constantly ask consultants why this was happening and if it could of been anything other than DKA as I had been looking after myself. They would dismiss my questions and put it back to the fact I wasn’t looking after myself. They looked at me like I was a silly little girl who was a hypochondriac that didn’t keep on top of her illness.

For months I had been on top of my blood sugars and now checking every 2 hours as I had no hypo awareness at this point and tried to make sure I wasn’t missing one, also making sure I had proof I was indeed monitoring my sugars and keeping a diary to show this. Every 5-6 weeks I was ending back in hospital for up to 2 weeks at a time. I started to lose a lot of weight and lost my appetite. Now having a 5 year old child this was not ideal nor acceptable one bit; I became tired of trying so hard and getting nowhere. I was constantly exhausted and spent most of my time in the house in bed as I was either too sick or in too much pain to go out. It was at this point I started to reach out to other diabetics I knew and asked for help. There had to be more to diabetes than this…

I started to learn from others how to carb count and what to eat and when was best to eat. I learned loads of great things from all these different people I had met throughout hospital admissions, every diabetic is different and what works for some didn’t for others but the biggest lesson I learned is that all these people had at one point been through this horrible stage and were there to support me. Some of the girls I had met developed gastroparesis, an illness in which your stomach muscles don’t work to the extent they are supposed to resulting in not being able to digest food properly. The symptoms? Extreme abdominal pain, constant vomiting, dehydration, weight loss, bloating and loss of appetite: everything I had, however, every time I was being admitted for these symptoms it was automatically presumed I was in DKA due to uncontrolled blood sugars.

I started to argue my case with my consultant that this is what I was suffering from. My consultant was not convinced as I apparently hadn’t been diagnosed with type 1 diabetes for long enough; he was rude, dismissive and arrogant. A few more months went past which meant more hospital admissions. The pain and vomiting would be so bad I would have to be given IV morphine and anti sickness regularly. I ended up with infections right left and centre because my immune system had became so bad because I was too run down from the lack of consistency of food. I was fed up and felt like I wasn’t being listened to so I asked to changed consultant, who then sent me for gastric emptying tests.

I was transferred hospital for the test and even ended up being sick through the test. The results came back showing I did in fact suffer from gastroparesis and wasn’t DKA causing the problem. Even though I knew this myself as I was projectile vomiting when my blood sugars would be sitting at 6.5 with not a ketone in sight, I wanted so much to say I told you so right in the consultants face but my mum did raise me to have a little bit more modesty than that, so I bit my tongue and asked what could be done now to help relieve the symptoms.

The best option for myself was a nasal Jedinal feeding tube as I had lost a lot of weight and was still unable to eat to take my insulin. Although it has solved some of the problems it hasn’t combatted them all. My illnesses can all be managed but never cured, it’s hard work and more restricting now than ever. I have to be home for 8 to start my feeds over night I can’t eat throughout the day even when everyone and their gran is munching on everything and everything; I’m still very tired and from time to time am sick. This then causes the tube to move and dislodge, even coming out through my nose and mouth at some-points which means more hospital admissions.

All this could have been avoided, I believe, if people were educated more in their illness instead of just being flung out the door with set doses and no clue how to deal with problems that could occur. Also I believe that the way consultants speak and communicate with their patients has a big impact on the way people then deal with their health, and their attitude towards it. I would like to raise as much awareness as possible as to just how important it is to be made aware of how serious type 1 diabetes can be, and if left uncontrolled, even for a little time, can have a major impact on your overall health.

With all that said – and hospitals not being the greatest place to be all the time – I wouldn’t of met the people I have and learned what I did if I hadn’t been through all of this, so I’d like to say a special thanks to all you wonderful people who help just by being yourselves.”