Tag: Access to Support

Diabetes Care from an Australian First Nation Perspective – by Chris Lee

Much of this is based on my own journey and in observations and conversations with family, friends, and First Nations people I’ve encountered in my professional, personal and cultural lives. I was diagnosed with type 2 diabetes back in 2014, and it’s been a difficult journey to discover what my condition was, what it was doing to my body, and how I can manage it better.

I was brought up in a family of 14 living in a 4-bedroom housing commission house in Darwin on the outskirts of the Aboriginal camp in Bagot. I grew up amidst the struggle of feeding, clothing and schooling such a tribe, and I started my career as a storyteller soon after leaving high school when I took up a traineeship at the Central Australian Aboriginal Media Association (CAAMA) in Alice Springs. I was immersed in a world of Centralian First Nations languages, people, cultural protocols, and LORE. 

Chris on the road to Pupanya in Central Australia

I was fortunate to live and work on the Pitajantjatjarra homelands in the community of Ernabella (Pukatja) working at Ernabella Video and Television (EVTV) in a language only workplace where the Aunties ruled, and everyone did what they told us to do. This was a period of intense cultural immersion and learning cultural lessons: After stints of teaching remote media students at Batchelor College and setting up the national body, I entered the criminal justice system as a youth worker at the Brisbane Youth Detention Centre. So many young, lost, mainly First Nations souls. I moved to the adult system first as a Custodial Correctional Officer and then returned as a Cultural Liaison Officer. Much of my time working the adult system was explaining documents, rules and encouraging the First Nations boys to get educated to break the cycle of offending. 

Many experienced trauma, were illiterate, and suffered from substance abuse (inhalants were the biggie at that time) and from abusive and broken homes. Life on the streets felt safe, and it was where they found a sense of family and camaraderie through other street kids. Crime seemed like almost a natural progression after dealing with food and housing insecurities and dulling childhood trauma through a substance habit, so these adolescents rotated through the juvenile justice system until they graduated to the adult system to join other incarcerated family.

I worked with a trauma-informed legal, therapeutic, and cultural support service on the Royal Commission into Institutional Responses to Child Sexual Abuse as the Queensland and Northern Territory First Nations engagement manager. I led First Nations community engagement and established a culturally safe space for First Nations survivors to give evidence to the Royal Commission. It was an absolutely traumatizing time for all involved. Throughout these positions, my main role was to digest then translate difficult and sensitive information and raise it in consultation with survivors, offenders, and suspicious clients in a way that engages them in the conversations. 

This was such an important foundation to where I’m at today.

My lived experience is the basis of my role at Diabetes Australia, where, as I said in a 2020 interview with the Melbourne School of Population and Global Health, I work to “provide an Aboriginal and Torres Strait Islander cultural lens on our range of projects, resources and policies which seek to reduce the terrible burden and impact of diabetes in Aboriginal and Torres Strait Islander people and communities.” There are many well-articulated reports and directives out there which outline many ways to provide culturally competent care by making small changes to accommodate cultural differences and be more culturally responsive. The Indigenous Allied Health Association (www.iaha.com.au) has published a fantastic report titled ‘Cultural Responsiveness in Action; An IAHA Framework’ which is incredibly informative. 

I believe it’s critical to provide the non-First Nations reader, clinician, or health professional with some understanding of the First Nations patient perspectives, in addition to offering some small changes to clinical practice which may improve the clinical experience for First Nations people and encourage greater participation in the journey. A wide range of obstacles get in the way of effective First Nations participation in the clinical experience, and it’s my goal to use my own journey to educate and empower Aboriginal and Torres Strait Islander people as well as clinicians to build stronger connections around diabetes management.

Fuelling Passions – by Shaina

Shaina Hatchell, BSN, RN, CDCES, is the author of Shia Learns and a recent Beta Change Minisode guest based in Washington, D.C.

I am a strong believer that my talents and life story are not for me. There is triumph in speaking about my life and using what some may see as my pain to fuel my passions.

My career as a CDCES nurse and now being an author of the Shia Learns series are all products of my career affirmations. When I started my personal journey of changing my life with affirmations, manifesting, and intentional living, my biggest goals were to become a certified diabetes educator and a published author. Today, I have accomplished both. 

Shia Learns is a small percent of my company, E1T1D Assembly. Each 1 Teach 1 Diabetes (E1T1D) Assembly is a company I created to be a community for people living with T1D, their allies, and educators. The E1T1D business umbrella also encompasses diabetes education programs, and a mentorship program for future BIPOC nutritionists and nurses at historically Black colleges and universities. I will also be doing freelance diabetes education for teachers/non medical staff and starting a mentorship program for RN/RD students at HBCUs to increase BIPOC educators.

Since starting my own business, I have learned that it is okay to start over. Until December 2020, I was the CEO of Product of My Affirmation, lovingly called “POMYA”. It is an oasis of stories and products geared to helping women and men on their journey to becoming the best version of themselves. I started this business after overcoming suicidal ideation. I was extremely unhappy with my life until I decided to move across the country (to Los Angeles) and turn my life into one that I wanted to live. I did this by stating daily affirmations, choosing to live intentionally, setting life goals, and working towards them day by day. I wanted to start a brand that allowed for a community to come together, find inspiration and feel uplifted while having a safe space to share their stories.

Now that I have published my first book and am in the process of publishing the second, I am working on merging POMYA’s brand initiatives with my passion of being an advocate and devoted ally to the diabetes community – inspired by my brother’s type 1 diagnosis. I decided to step away from POMYA full-time to focus on E1T1D Assembly. At the same time, self love, self care, and believing in an individual’s ability to achieve whatever it is that they want are ideas I continue to reinforce to my patients and their families as a CDCES! I am patient with myself and my brand’s growth, which has made this journey rewarding. 

I have received many personal messages from T1D siblings and people with suicidal ideation who have thanked me for my ability to share my life and family’s story. It is so important to step up as allies! We are the individuals who can bridge the gap and help better normalize diabetes conversations. Individuals living with diabetes deserve to feel normal and I will not stop until saying “I have diabetes” is normal and understood. I love speaking about both mental health and diabetes on my platforms. If being so transparent helps one person/family, then it has been worth it.

Follow @shialearns on Instagram, and check out Shai’s Minisode with Pei Yan Heng here!

Living with T1D & Insulin Allergy – by Annelieke

Dear Beta Change, 

Do you know that song from the Miss USA pageants (“You’re one in a million” by Bosson)? Well, that’s sure how I felt when I was diagnosed with insulin allergy on top of having type 1 diabetes. 

It’s a very rare condition, with only 0.1% of insulin-requiring people also living with an allergy. (Okay, fine, that percentage makes it like 1 in a thousand instead of 1 in a million…but still.) Along with type 1 itself and having a gluten sensitivity, it sucked. To top it off, there was no information available besides some scientific papers stating it was rare. 

I learned that following my diabetes and gluten diagnoses, it helped so incredibly much to find others who were in the same situation, and see how they managed their daily lives and learn how I could obtain some of their wisdom. But now, there was nothing apart from the one A4 pamphlet the hospital gave me. Writing for me has always been a coping mechanism and I decided to share my ‘journal’ in the form of a blog, BlueGlu10, in the hope that the next person diagnosed with insulin allergy didn’t have to feel so alone and that they would know it can get better. 

I’ve been lucky, six years after my treatment and I don’t have any recurring symptoms yet. But at least if it does happen again, I now know there is a solution. Scientists still don’t completely know how it works but it’s called desensitization and basically means that you get exposed to the insulin in increasing doses in the hospital. Starting with homeopathic amounts increased to a ‘normal’ dose of insulin after a couple of days. Each time your body does not show signs of allergy you can increase the dose. Sounds simple but don’t try it at home! The despair, the lack of knowledge, the insecurities, and the big lingering question of ‘what if this treatment doesn’t help’ were a lot to cope with back then.

Since then I’ve continued writing about my so-called ‘adventures’. For a while I focused more on the gluten free aspect of living my life, whereas now I’m starting to write up my pregnancy and there are plenty of hilarious draft posts on my phone about the new-mom life in combination with diabetes and trying to keep those sticky gluten-containing fingers out of my mouth. 

As always, there’s the slight challenge of finding time and energy to write things up. Even though my blog doesn’t have a lot of followers, the ones that do read my stories are grateful, especially the fellow insulin-allergy adventurers. At the very least, my blog helps me to put my woes and sorrows in a different perspective. 

In the Netherlands there’s a children’s show (Bassie & Adriaan) with a key message to keep laughing, no matter what. I try to write my posts with dry humor and a splash of irony / self-wit so that I can try to put a semi-positive spin on my everyday life, even if nobody actually reads it (which happens with some posts.) What my blog and my social media presence does for me is to put my mishaps in a more positive light and remind me that I’m not alone, even if I’m one in a thousand. With all the negativity in the world, there’s never enough #positivethinking!

Hugs,
Annelieke

Follow Annelieke on Instagram: @BlueGlu10

Lees in het Nederlands: 

Lieve Beta Change,

Ken je dat liedje van de Miss USA beauty wedstrijden (“You’re one in a million” by Bosson)? Nou zou voelde ik me wel toen ik de diagnose insuline allergie kreeg bovenop mijn type 1 diabetes. 

Het is (gelukkig) zeer zeldzaam, maar 0.1% van de mensen die insuline nodig hebben krijgen te maken met een allergie. Vooruit, dat is natuurlijk maar 1 per duizend mensen en niet 1 per miljoen maar toch. Bovenop het al hebben van type 1 diabetes en glutensensitiviteit kon dat er óók nog wel bij! Bovendien was er maar zeer beperkt informatie over te vinden behalve wat wetenschappelijke artikelen die benoemde dat het maar zelden voorkwam. Bedankt, daar was ik inmiddels al acther.

Na mijn diagnose van zowel de diabetes als de gluten merkte ik dat het zo ongelofelijk veel hielp om met andere die in hetzelfde schuitje zaten te sparren. Zo kon ik leren van hun ervaringen en zien dat het met een beetje tijd allemaal wel goed zou komen. Nu was er behalve een A4 brochure dat het ziekenhuis mee gaf niets te vinden. Schrijven is voor mij altijd al een uitlaatklep geweest en zo besloot ik om mijn hersenspinsels met anderen te delen in de vorm van een blog, BlueGlu10. Zo hoopte ik dat er voor de volgende die hiermee gediagnosticeerd werd wél informatie te vinden was en zij niet de eenzaamheid hoefden te ervaren zoals ik dat had.

Ik heb mazzel gehad, zes jaar na mijn behandeling is het nog niet teruggekomen. Maar, mocht dat wel gebeuren weet ik nu tenminste wat er over mij heen komt én dat er een oplossing voor is. Wetenschappers weten nog steeds niet precies hoe het werkt maar het process heet desensitizatie en houdt in dat je steeds een mini beetje insuline toegediend krijgt in een oplopende dosis. Met een ziekenhuisopname wordt er begonnen met een homeopatische hoeveelheid die uiteindelijk wordt uitgebouwd naar een ‘normale’ dosis. Telkens als je lichaam geen tekenen van allergie vertoont mag je weer een ‘trede’ hoger. Het klinkt heel simpel maar probeer het toch maar niet zelf! De vertwijfeling, onwetendheid, onzekerheden en vooral die grote vraag die steeds in je achterhoofd zit ‘wat als dit óók niet helpt’ was een behoorlijke last om dagelijks mee te dragen.

Sindsdien ben ik over mijn dagelijkse ‘avonturen’ blijven schrijven. Een tijdje ging dat wat meer over het glutenvrije leven, op dit moment ben ik bezig mijn zwangerschap te verwerken en er staan al meerdere hilarische punten op mijn telefoon om uit te werken over het leven van kersverse moeder in combinatie met diabetes en al die plakkende gluten handjes uit je mond te houden.

Zoals altijd is het lastig om de tijd en energie te vinden dus ik loop wat achter. Ook al heeft mijn blog niet bijster veel volgers, degene die het lezen zijn dankbaar, vooral diegene met insuline allergie. Zelfs als niemand het zou lezen zet mijn blog op zijn allerminste mijn dagelijkse frustratie in een ander perspectief. Net zoals er in Bassie & Adriaan gezegd werd; “altijd blijven lachen”. Dus probeer ik in mijn blogs maar met humeur en een vleugje sarcasme/zelfspot mijn avonturen op te schrijven. Want met alle negativiteit in de wereld kun je niet genoeg positiviteit hebben! 

Annelieke

Follow Annelieke on Instagram: @BlueGlu10

Minisode: Surfing the Waves with Diabetes

2017 Australian Long Board Surf Champion Ben Considine joined Fi and Ash to talk about his holistic approach to life, diabetes, and surfing! Watch the Minisode recap to learn about Ben’s roots in Victoria, Australia, how he manages traveling the world and surfing with type 1 diabetes, and how he balances life as a 23-year-old Exercise Science and Physiotherapy student with his longboard surfing career! Follow Ben on Instagram: @ben_considine

Overcoming Challenges with Diabetes – by Kamila

This year marks sixteen years since I was diagnosed with diabetes. I am now 32 years old, a teacher, the editor of Diastyl magazine – my country’s only diabetes magazine published by the IDF member organization VAZ Diabetiku Ceské Republiky – and above all, the mother of a two-year-old son. 

I still remember the day I was diagnosed with diabetes. I hadn’t felt well in a long time because I had mononucleosis. I was hospitalized with a lot of sugar in my urine. I still remember that feeling; someone made a mistake, I thought…I don’t have diabetes, maybe someone else has it, but not me. I was absolutely convinced that the doctors were wrong – I even literally kicked the diabetes educator out of my hospital room, saying that I definitely didn’t have diabetes!  

Well, it turned out that I did actually have diabetes and the diabetes educator came back the next day to try again. 

I also remember feeling different and weird compared to my peers; I didn’t know anyone with diabetes and I had no one to share my experiences with. But a lot has changed since then; I have met a lot of great people with diabetes and I am grateful to be able to help organize various projects. For eight years I have been a leader at camps for children with diabetes. That’s where I met a number of friends and, best of all, where I met my wonderful husband, who also has diabetes. I also run Diastyl magazine, which deals with the lives and treatment of people with diabetes. It’s great to be part of a worldwide family!

I was also allowed to become a Young Leader in Diabetes (YLD), representing the Czech Republic in the International Diabetes Federation (IDF) World Diabetes Congress training program. I completed my training in Vancouver, Canada and I am very grateful for this opportunity. It was great to meet young people with diabetes from all over the world; I remember it very much and to this day, I stay in touch with the friends I made. I also took part in a European camp in Cyprus and I still like to remember the friendly atmosphere full of interesting and creative ideas! I would like to thank the IDF for providing these opportunities, and all those involved in organizing and promoting similar activities. It is so important that we meet and share our experiences and ideas!

Living with diabetes is not easy, but I am very happy to live in the Czech Republic. I don’t have to pay for insulin or other devices such as insulin pumps, syringes, glucometers, etc. In the Czech Republic, we have access to the latest equipment and technology to manage diabetes. Since last year, we can use up to 24 CGM sensors per year for free. I am very sorry that not all people with diabetes have the same access to insulin and advanced or basic treatment. This is an unfortunate reality. Diabetes treatment should not be affected by where a person lives or how much money they have! 

I often think about what diabetes took from me. I have lost some freedom because I will never go without insulin and my insulin pump again, I will always have to think about the food I eat, and I need to be prepared to experience hypoglycemia. I will never be able to fast all day, regardless of my blood glucose. I will always have to pack all of my diabetes supplies into my purse or suitcase. I will never buy a mini handbag again, because I need to carry enough things with me to manage my diabetes 🙂

Still, I feel like diabetes has given me more things than it has taken away. Thanks to diabetes, I met many new friends both in the Czech Republic and around the world. Thanks to diabetes, I can help in camps for children with diabetes and participate in a number of interesting projects. One that I care very much about is a project I am involved with together with my boss and team. We organized an event for young people with diabetes aged 18 to 30 years where we talked about things like sex and diabetes, alcohol and diabetes, or diabetes and pregnancy with input from doctors and psychologists. I believe that sharing experiences between people with diabetes is very important and beneficial – for instance, since not everyone has a husband who also has diabetes, we talk about relationships and when and how to tell our partners we have diabetes. 

Diabetes is actually such a challenge for me. For example, I had to figure out where to hide an insulin pump on my wedding day and how to handle pregnancy and childbirth. I also challenge myself to make the most of living with diabetes and I have learned a lot through adventures like trips in the mountains with a backpack on my back. Diabetes has also taught me more tolerance for others and for myself because it teaches me to appreciate the good things in life…as we say in the Czech Republic, if it’s not about living, it’s about all the shit that happens! 

Přečtěte si pohlednici v češtině:

Letos uplyne už šestnáct let od chvíle, kdy mi byla diagnostikována cukrovka. Je mi 32 let, jsem učitelkou, redaktorkou časopisu Diastyl, jediného časopisu o cukrovce v mé zemi, a především jsem matkou dvouletého syna.

Stále si pamatuji na den, kdy mi byl diabetes diagnostikován. Tehdy jsem se už delší dobu necítila dobře, protože jsem onemocněla mononukleózou. Byl jsem hospitalizována kvůli tomu, že jsem měla zvýšený cukr v moči. Dobře si pamatuji na svůj tehdejší pocit: někdo udělal chybu, říkala jsem si …Já nemám cukrovku, možná ji má někdo jiný, ale já ne. Byla jsem absolutně přesvědčena, že se lékaři zmýlili – dokonce jsem doslova vyhodila edukační sestru z mého nemocničního pokoje s tím, že já rozhodně nemám cukrovku a edukovat nepotřebuji!

Samozřejmě se ukázalo, že mám diabetes a edukační sestra se druhý den opět vrátila zpátky.

Také si pamatuji, jak jsem se tehdy mezi svými vrtevníky cítila – tak nějak divně a prostě jinak; Neznala jsem tehdy nikoho s diabetem a neměla jsem tedy s kým sdílet své zkušenosti. Od té doby se ale hodně změnilo: potkala jsem spoustu skvělých lidí s cukrovkou a jsem vděčná za to, že mohu pomáhat s organizací různých projektů. Osm let jezdím jako oddílová vedoucí na tábory pro děti s diabetem. Tam jsem potkala řadu přátel a také svého manžela, který má rovněž cukrovku. Pomáhám také s vydáváním časopisu Diastyl, který přináší informace o životě s diabetem.

Také mi bylo umožněno stát se Young Leader in Diabetes (YLD) a zastupovat Českou republiku ve vzdělávacím programu IDF na světovém kongresu Mezinárodní diabetické organizace. Absolvovala jsem výcvik v kanadském Vancouveru a jsem za tuto příležitost velmi vděčná. Bylo skvělé setkat se s mladými diabetiky z celého světa; Ráda na to vzpomínám a dodnes zůstávám s některými z nich v kontaktu. Také jsem se zúčastnila tábora IDF pro zástupce evropských diabetiků na Kypru a často ráda vzpomínám na přátelskou atmosféru plnou zajímavých a kreativních nápadů! Ráda bych IDF a všem, kteří se podílejí na organizování a propagaci podobných aktivit, poděkovala za tyto skvělé příležitosti. Je tak důležité, abychom se jako diabetici setkávali a mohli sdílet své zkušenosti a nápady!

Život s diabetem není snadný, ale jsem velmi šťastná, že žiji v České republice. Nemusím platit za inzulín nebo jiné pomůcky, jako jsou inzulínové pumpy, glukometry atd. V České republice máme přístup k nejnovějšímu vybavení a technologii pro léčbu cukrovky: od loňského roku můžeme používat až 24 senzorů (v mém případě G5) ročně zdarma. Je mi velmi líto, že ne všichni diabetici mají stejný přístup k inzulínu a pokročilé nebo základní léčbě cukrovky. To je ovšem smutná realita. Léčba diabetu by neměla být ovlivněna tím, kde člověk žije nebo kolik peněz má!

Občas přemýšlím o tom, co mi cukrovka vzala. Ztratila jsem určitou míru své svobody, protože se už nikdy neobejdu bez inzulinu a inzulinové pumpy, vždy budu muset přemýšlet o tom, co jím, a musím být neustále připravena na hrozící hypoglykemii. Nikdy se nebudu moci celý den postit bez starostí o svou glykémii. Vždy bude mé zavazadlo kvůli kompenzačním pomůckám, jako jsou sety či zásobníky a sladkosti na hypo, těžší a větší, než kufry ostatních cestujících. Už si nikdy pravděpodobně nekoupím malou kabelku nebo psaníčko k šatům, protože s sebou neustále nosím spoustu dia-věcí.

Přesto mám pocit, že mi cukrovka více věcí dala, než vzala. Díky cukrovce jsem potkala mnoho nových přátel jak v České republice, tak po celém světě. Kvůli diabetu mohu pomáhat v táborech pro děti s cukrovkou a účastnit se řady zajímavých projektů. Pomáhala jsem například organizovat akci pro mladé lidi s diabetem ve věku od 18 do 30 let, kde jsme mluvili mimo jiné o různých “tabu” tématech jako je cukrovka a alkohol či diabetes a sex. Řešilo se také téma těhotenství při diabetu 1. typu. Akce se vedle lékařky účastnila také psycholožka a výživová poradkyně. Věřím, že sdílení zkušeností mezi lidmi s diabetem je velmi důležité a přínosné.

Cukrovka pro mě vlastně často představuje takovou výzvu. Například když jsem během svého svatebního dne musela přijít na to, kam schovat inzulínovou pumpu nebo když jsem řešila, jak zvládnout těhotenství a porod s čím jak nejlepší kompenzací. Snažím se žít aktivní život s diabetem a plnit různé výzvy, jako jsou například výlety do hor s batohem na zádech. Cukrovka mě také naučila větší toleranci vůči ostatním a vůči sobě samé. Díky nemoci se snažím svou energii věnovat především důležitým věcem a zbytečně neprožívat nepodstatné věci… protože jak se říká – když nejde o život, jde o hovno…

Diabetes Care During COVID Times – by the Diabetes Community Care Team

The Diabetes Community Care Team (DCCT) is a nonprofit, pharmacist-operated diabetes clinic which increases opportunities for people living with diabetes to access medical care and education. Our Mission is to help people with all types of diabetes manage the challenges of living with a chronic disease and mitigate barriers to care including financial, psychological, and medical. While we hope that one day diabetes can be cured and/or eliminated, our vision is to ensure ongoing community access to quality diabetes treatment, education, care, and management regardless of financial or insurance status now and in the future. While COVID-19 has presented numerous challenges, not least of which is keeping our at-risk clientele safe, we are rising to the challenges and have been able to offer significant help to those impacted by the health crisis and to the victims of the recent Oregon wildfires.

Julie Dewsnup is not only the founder and Executive Director of DCCT, she’s also a pharmacist and recognized diabetes educator

During these difficult times, our services are more critical to our community than ever. In addition to our billable services like Diabetes Education and full-service pharmacy, we offer our current and future clients the use of our Charitable Pharmacy, where we work specifically with uninsured patients to ensure they are still able to receive quality care when it comes to managing diabetes. Given that the current American Health system often ties health care and insurance with employment, many Americans are losing or have lost their health benefits as the direct result of the COVID-19 pandemic decimating the job markets. All medications used by our Charitable Pharmacy are the direct result of generous donations by local and regions healthcare facilities and long-term residences as well as the outcomes of a generous grant from the PacificSource Foundation for Health Improvement and United Way of Lane County made specifically for the purchase of diabetic medications. Furthermore, we are also staffed with pharmacists, all of whom generously donate their time and expertise, that are also trained to specifically address the particular needs of both people with type 1 and type 2 diabetes.

Pharmacists Molly Bloom and John Marvin show off their pandemic savoir flair

We also offer a free mentorship program (BETA – Buddies Empower Teach Achieve) for children who may also be struggling with their type 1 diagnoses and who may benefit from the experience of being paired with college students, all of whom have been trained as diabetes paraprofessionals and who also live with type 1. Led by intern Adriana Wisniewski, a student at the University of Oregon, this mentorship program is in the process of a successful transition to a virtual format in order to keep the support system in place for our BETA mentors and mentees alike.

For more information about Diabetes Community Care Team or how you can help, please visit www.dcct.life.

Living with Diabetes in the Maldives – by Juzan Mohamed

10 years after my diabetes diagnosis, no matter how much I always wanted to keep hoping, believing, and praying, there were several times that I almost thought, “I’m not going to make it this time. I’m probably going to die on this hospital bed”.

Today, I’m a special educational needs teacher and a member of Diabetes Society of Maldives. I love both kids and cats very much!I would like to thank all the doctors who have treated me and helped me. I would like to thank my father, brother, and especially my mother, who had been the source of my strength. My heartfelt thanks also goes to the Diabetes Society of Maldives. Words cannot describe how thankful I am for that community.

Several people have mockingly told me that I must have gotten this disease because I must have eaten a lot of sugar. I believe it’s important that we put more effort into educating the public about diabetes, its risk factors, and any preventive measures. I wish they knew that there are many factors involved not only in a diagnosis, but in diabetes management. Insulin for us, along with the means to inject it, is as important to us as the air we breathe. We just cannot survive a single day without these injections.

Getting an insulin pump in 2017 was nothing short of miraculous. This was a day that I never thought would come. This pump is always connected to the body with a tiny needle which needs to be changed once in every 3 days – it’s microscopic in size and automatically injects my insulin. Yeah, this is pretty amazing!

That’s why I advocate for the community of diabetics in Maldives to soon have access to more effective treatment options, including different brands/types of insulin and increased availability across the country. It is my hope that insulin pen needles, lancets and test strips would soon be covered under Aasandha, the universal single-payer health insurance scheme of the Maldives. More of us with type 1 diabetes need to have access to insulin pumps, which provide us with an easier life. In Shaa Allah, we will soon have better days and find a cure for diabetes.

Follow Juzan on Instagram: @juzanmohamed

Navigating Life and Diabetes During COVID Times

What a year 2020 has been! COVID-19 has, without a doubt, thrown a spanner in our lives and left us scrambling trying to adapt to a “new normal.” We’ve seen this impact our team at Beta Change in numerous ways too – from sudden change in workload, being stranded away from our loved ones, to working from home with kids, the Beta Change team have had to physically and mentally adapt to life during COVID. At our last meeting, our team discussed how COVID has impacted us and here are some of our thoughts on it from where we are. 

What’s Happening Where We Live?

Ashley lives in Melbourne, Australia where they are currently in Stage 4 lockdown. Some restrictions in place include travelling within a 5km radius of their current residence for essential services once a day, one hour limitations on outdoor exercise and mandatory face coverings when leaving the home. At the time of publication, only the state of Victoria has Stage 3 or 4 restrictions in place. 

Katie lives in New York, in the U.S. where regulations also vary across state and federal levels, which makes it important to keep tabs on the travel restrictions and data for each state. Everyone wears masks, especially in densely populated areas. Big events like weddings are getting cancelled or rescheduled for Zoom, so it’s been hard to accept that things have to be done differently than planned.

Pei Yan lives in Singapore, where they are currently in Phase Two of Circuit Breaker. This means that most businesses can operate with Safe Management Measure in place. Full reopening of schools had started at the beginning of June, with adjustments made to the current school term. Currently, it is still mandatory to wear a mask once you step out of your house.

Stephanie lives in Perth, Western Australia where life seems to be almost back to normal. Many restrictions have eased allowing for businesses to operate with a 2 square metre rule in place; stadiums and large events can operate at half capacity. However, state and international borders remain closed, meaning all non-essential travellers must quarantine for 14 days. 

Fi lives in Geelong, Australia where they currently have stage three restrictions, which means staying at home except for exercise, essential shopping or work. Like all the rest of Victoria, wearing a mask is mandatory. School children have also returned to remote learning after a brief period back at school.

How has COVID impacted you?

Ashley: Since March, I’ve been working from home, which has its pros and cons. While I save the effort on the two hour round trip travel time, I really do miss the bustling workplace environment and corridor conversations with colleagues. The hardest part has been not being able to see my family during this time as we’re quite close. Thankfully we’ve got video calls! 

Katie: I orchestrated a remote move while sheltering in place. The transition to working and attending graduate school remotely has also been quite smooth. However, there’s a strange phenomenon of time feeling like it’s passing by both quickly and slowly at once.

Pei Yan: All schools went into a full home-based learning routine early April. As a teacher, it has been a steep learning curve for us to pick up skills needed to conduct synchronous or asynchronous online lessons to students. I have never sat in front of my computer for such long durations before. It was also difficult to be working from home with other family members doing the same as well. Right now, many are out and about and life has partially resumed, but we know we will not be able to return to how it used to be before COVID for a while.

Stephanie: This pandemic separated me from my fiance for 5 months. When restrictions started in March, I feared being isolated from my friends and family. And with Giles’ fly-in-fly-out roster we couldn’t risk him bringing COVID into the house where I would have been working. I travelled to Hobart, Tasmania to ‘see out’ the pandemic with the support of my family. I have been lucky to have continued working from home surrounded with support, and get to holiday within Tasmania again; I’m now a week into my 2 week quarantine after arriving back in Perth and I can’t wait to see my man! 

Fi: We are currently in our second round of remote learning. My son is in grade 1, thus balancing work and home schooling has been interesting to say the least. Though it has been challenging, I have loved the opportunity to see how he learns and assist him to be the best learner he can be. The most challenging aspect has been being separated from my parents and trying to explain to our son this is only for a short time and we will be together again soon.

As a nurse we now have to wear safety glasses and face shields for all clinical contact. This has had its challenges, especially in engaging with patients. Since March, I have been doing a mixture of Telehealth appointments and face to face in the hospital. I could never have imagined doing a pump or CGM start via Telehealth but this has now become the norm. Surprisingly it works well and I have loved being challenged to support and educate people living with diabetes in a different manner. 

How has COVID impacted your diabetes management?

Ashley: The biggest impact COVID has had on my diabetes management has been my exercise routine and being more sedentary. With gyms closed, I’ve had to adapt to home workouts, which worked out well at the start until the motivation waned away. 

Most of my health appointments have also been moved to telehealth with a few exceptions. It’s been interesting to see the COVID precautions step up over time and its impact on healthcare staff. There’s been a heightened sense of anxiety and stress from staff, which can make appointments a bit more stressful from a patient perspective. 

Katie: It’s been hard to adjust to having less movement built into my day – normally I’d hit 10,000 steps without even trying. Now, without a commute, I need to be more conscious of how much I need to take a break, get up, and move. 

Cooking every meal has been getting harder as time goes on, so takeout dinners have been a real treat! 

Pei Yan: When the circuit breaker was imposed, all of my aikido training sessions were suspended and I stayed seated at my computer desk most of the time everyday. My eating habits also changed. While I enjoyed deciding what to have for each lunch, as time went by, it got more difficult to think of a decent meal to cook and choices became slightly more repetitive and boring. Once in a while I ordered food delivery when I felt I needed a change in food choice. All of this impacted my weight more than my diabetes management. 

I am not sure how my experience going for my diabetes appointment will change as I had my last appointment just before the circuit breaker measures kicked in. My next appointment will be in September, so I will wait for the SMS notification from the hospital to see what options there are, but I will still need to make a trip to the hospital to get my medications.

Stephanie: COVID has helped me become more conscious about my exercise and food habits, so my diabetes management has actually been reasonably good! My usual 30 minute walk as part of my commute each day turned into intense workouts which has evened out my blood sugars and boosts my mood. I’ve also taken a break from CGMs and relied on the trusty finger prick, so I haven’t been getting that extra fatigue that comes with more data. 

Fi: I think the biggest impact for me in relation to my diabetes is exercise. Finding time to exercise especially with the restrictions, juggling work and home schooling has been challenging. I’m grateful I have a 7 yr old who loves playing hide and seek and freeze tag as this has kept me more active than I would have otherwise been.

What are you doing to stay positive?

Ashley: I think the biggest thing for me has been to focus on being kind to myself. Keeping up with social connections with my family, friends and colleagues has been key to being sane, grounded and reminding me that I’m not alone. I also try to find things to look forward to such as some online shopping and changing my physical environment around me by getting flowers or lighting a candle. 

Katie: I echo Ashley’s reminder! Being kind to myself is the hardest thing, but also the most important. I also try to remember that this is temporary, even though we don’t yet know for how long. 

Pei Yan: I guess being able to go back to work in school and resuming most of the activities I like before the Circuit Breaker has been a relief. At the same time, I am thankful that I am surrounded by students whom I can have fun social connections with at school. Dynamics among social groups of friends seemed to become distant, but there will be other groups of friends around to cheer me up or to have fun with.

Stephanie: I think we’re all on the same page with this one. It’s the little things that matter right now. I’ve been trying to take in everything and every interaction as if I was a kid seeing things for the first time, and really delving into the beauty of the landscape, why I enjoy the company of certain people, crying openly (it gets so overwhelming sometimes) and sharing those pieces of you that are usually stored away because life is too busy. 

Fi: I’m so grateful for technology and being able to connect with family and friends. My parents have been doing virtual cooking classes with their grandsons, which have been so much fun. Another highlight has been our son reading to his Nan each day on FaceTime. Seeing our little boy adapt to the new norm has made it so much easier for my husband and I to stay positive. I have also found a new love of rainbows and the hope they bring. Though COVID has definitely thrown us challenges  it has definitely made us appreciate everything in our life so much more.

And there you have it! A huge thank you to our team who have so openly shared their experiences with adjusting to our new normal. How about you? How are things going for you and what are you doing to stay positive? We would love to hear from you!

Tina’s Type One & Studying Abroad – by Tina Mallia

Back in April 2018, after a long day at university, I went home to find a letter of acceptance to study abroad on an Erasmus programme. Erasmus allows students to study in another European country for a couple of months – I had applied to study in Scotland for around five months, and as ecstatic as it felt to be chosen for such a programme, I was also petrified of moving to a new country, somewhat far away from home. 

My fear was amplified when I remembered that I would be living alone with diabetes. For any other university student this may be a normal occurrence, but for students in Malta, for the most part, we tend to live at home with our parents until we graduate. With that being said, I was lucky to always have my parents help me keep tabs of my diabetes management especially during stressful periods, sometimes even have them noticing hypoglycaemic symptoms before I even notice them myself. Doubts and concerns started to pop up in my head:

“What if I get a severe hypo or hyperglycaemia and no one will notice?”

“What if the UK does not use the same types of medicine as we do?”

“How will I be able to keep everything in check?”

These types of thoughts overwhelmed me to a point where I even considered not going up to Scotland. However, the thought of countless people worldwide successfully living alone with diabetes, and knowing that one day or another I would require to do so myself, consoled me. Furthermore, studying abroad was something I always wanted to experience and did not want to pass up on such an opportunity, simply because of a fear, which either way I would have to face in the near future. Despite saying I was living alone, I did have a friend coming up with me, to which we made it a point that we would live next door to each other. Knowing all this and having her support really encouraged me to take the leap. Needless to say, a lot of research commenced – especially regarding the healthcare system in the U.K. 

Here in Malta, we are given free healthcare services, diabetes supplies, and medicine, however this excludes CGMs and insulin pumps. These tools have not yet been fully introduced in Malta. However, through elaborate methods and hefty prices, some Maltese pay out of pocket for the use of CGMs. Knowing that the U.K. has better access to such diabetes technologies and having easier access to them made me feel more secure about spending a few months there.

Despite some slight differences in the type of healthcare supplies available in the U.K., the research I did around the National Healthcare System (NHS) truly put my mind at ease. I made a plan with my local endocrinologist to take enough medicine with me in case of differences in the brands available in the U.K. and to also assure myself that I have the full supply I require. Before leaving, I gave a briefing about diabetes to the friend who travelled with me so that she could fully understand what diabetes is and how to help me during a hypo or hyperglycaemic episode, if need be. This made both of us feel secure and prepared for the unexpected.

On January 5th 2019, we set off on one of the most unforgettable experiences I have ever had. I was positively surprised with the NHS, as although I heard various excellent reviews about them, I did not expect such efficiency with their system. Shortly after I applied for free medical services with my student eligibility, I was immediately called in for various check-ups like eye screening and vascular review. Although I had these services in Malta, I did not expect such services for a temporary resident there and with such short wait times!

However, my diabetes management there was not all plain sailing, especially due to the fact that I was in a new place, leading a different lifestyle, and adopting new eating habits. In Malta, I was used to getting around by cars and buses, while in Scotland I was walking to most places on a daily basis. The stress of moving to a new place and the usual stress from university also did not positively affect my diabetes management. To add onto this, I was frequently experiencing hypos at night, so much so that at one point I was no longer feeling hypos during my sleep. With thanks from the support I was getting from my local endocrinologist and diabetes nurse specialists, I was able to sort this issue out, amongst a few other issues that I was facing whilst living there.

I am grateful I was able to experience living independently in an entirely new country, meeting some of the most wonderful people from all around the world, and most importantly, doing what I love the most: travelling. I am thankful for all the encouragement I received from my family and friends, and also from my doctors and specialists who pushed me and gave me heart to not let such an opportunity pass by simply because of my diabetes. The most prominent lesson I learnt from this experience is that my diabetes should not dishearten or stop me from achieving anything that I truly desire to achieve, and I truly encourage others to do the same, as you never know what one fantastic opportunity could lead to.