BALANCE AND BOLUS: NORMALISING ILLNESS

@The Rising Womxn Zine / Balance and Bolus

Written by Emily Stephens (she/her) for The Rising Womxn Zine

Type 1 diabetes causes the level of glucose (sugar) in your blood to become to high. It happens when the body can’t produce enough insulin, a hormone which controls blood glucose. Those who suffer with the illness need daily injections of insulin to keep blood glucose levels under control and managing type 1 diabetes can take a long time to get used to. 

 

Diabetes has long been associated with being overweight and obese by the media, but this simply isn’t true – people leading a perfectly healthy lifestyle are also exposed to diabetes.

 

Balance and Bolus - created by Ciara Cray (she/her) started as a website to show how she balances life with Type 1 Diabetes. ‘I wanted to share my experience studying to be a Registered Dietitian and eventually Certified Diabetes Educator mixed in with my experience as a Type 1 Diabetic. I took these two goals and ran towards them while just being myself on Instagram. I have always been a very positive but emotional person, so I share a lot of my ups and downs. A lot of the ups include my humour and weird dance videos that make people laugh, my emotions are shown through serious talks about life and diabetes. I basically try and show everyone what my life is like and that just so happens to involve being diabetic. I also love to talk, so this gives me a place to have conversations with diabetics like me every single day.’

@balanceandbolus

 

Ciara created Balance and Bolus after she graduated with her first bachelor’s degree and was feeling a little lost. ‘I wanted to combine this passion I had behind food with the knowledge I had on Type 1 Diabetes so I started a blog that I thought would be a good outlet for me while I sort out my next move. I ended up deciding to pursue being a Registered Dietitian (R.D) and wanted to talk about that mixed with living with Diabetes on what became Balance and Bolus. It wasn’t until a friend of mine suggested I share my blog posts on Instagram that I decided to start an account there and was amazed by all the diabetics in the community who were helping others. So, I decided to put myself out there, share what I knew and what was learning.’

 

@balanceandbolus

 

Long standing stigmas surrounding diabetes can make it very hard for sufferers, especially younger girls in particular. With the constant assumption of diabetes being linked to being overweight or unhealthy, this creates a whole problem surrounding body confidence and body positivity. ‘Women are constantly under the microscope. We can’t be too skinny, but we can’t be too fat. We can’t have too small of boobs but if we have big boobs then we’re...promiscuous? Being a woman is hard and to have a disease as a woman that is stigmatised as being from an unhealthy weight can definitely grind the gears a bit. We walk around already feeling judged and now this? But I also think that this disease with the carb counting, and body awareness can make it difficult to ignore food and the effect food has on our body which has definitely led to bouts of disordered eating for me. All the more reason to start a brand that works to help people with this and the stigmas around the disease.’

@balanceandbolus

 

Ciara has managed to grow a big following on social media, reaching 10.3k on Instagram. When asked about how important it is to share her experience with diabetes as a newfound influencer, she said, ‘I really had no intention of building a following like this. I had no idea what it would entail or the lives I would touch. But now that I’m here, I can’t help but think that I must be doing something right. I must have something worthy of saying or else why are all these people here? So, I have to use that. I’ve always had a bubbly and at times loud personality. I love to talk. I need to use that now. I didn’t always know what I wanted to do in life, but this just feels right. Keeping the conversation going is how we educate people, how we bring awareness and allow those diagnosed with this disease (and weren’t given a say in the matter) to live the best life they can be.’

 

@balanceandbolus

 

Much like the breast-feeding in public debate, we wanted to know if Ciara had ever faced similar backlash from checking her bloods in public. ‘I will check my blood sugar absolutely anywhere I please. I haven’t personally been told to do my blood checking elsewhere, but I know people who have. I’ve also felt guilt around checking in public before, so I’ll excuse myself to the bathroom. I don’t think we should have to do that though. This is our body; we’re trying to stay alive. Look away.’

@balanceandbolus

 

Ciara’s main focus is to normalise the conversation around illnesses, in particular diabetes. ‘I think I actively normalise my illness by showing my weird, wild, sometimes just boring and relaxed life with diabetes. I do all the things that someone who produced their own insulin would do. I exercise, I work really hard, I study, I watch hours of Netflix, I go on vacations and travel. But I do it all with a broken pancreas. So, I hope that people can see that, I mean people without diabetes too, and be like oh, I guess having that disability doesn’t stop someone from living a life to the fullest.’

 

 

To find out more from Ciara and her amazing work, visit her website www.balanceandbolus.com or follow her on Instagram @balanceandbolus

 

 

JUST BREATHE: BEING A DISABLED MOTHER

@The Rising Womxn Zine

Written by Emily Stephens (she/her) for The Rising Womxn Zine

About 10,000 people in the UK are newly diagnosed with a lung disease every week. Approximately one in five people in the UK have developed asthma, COPD or another long-term respiratory illness. Half of them are currently on treatment for lung disease. (BLF)

 

Respiratory disease is one of the biggest killers in the UK, with the mortality rate in England in 2018 at 161 deaths per 100,000 population for men and 117 per 100,000 for women. (Statista) 

 

One of the most commonly known respiratory diseases is asthma, a condition which currently has no cure – but can usually be controlled and managed with appropriate treatment, such as inhalers. Lung cancer is also more commonly known than other respiratory diseases, with approximately 39.8 thousand new cases of lung cancer diagnosed in England in 2017. (Statista)

 

There are a number of lesser considered respiratory diseases, such as emphysema and COPD. Around 2% of the UK population live with diagnosed COPD, but research shows that this number is growing. In the last decade alone, the number of people who have had a diagnosis of COPD has increased by 27%, from under 1,600 to nearly 2,000 per 100,000. (BLF)

 

Disabilities, lung disease included, can have a damning effect on overall quality of life, and this can be a particularly harrowing thought for new parents. 

 

Alison Wood (she/her) is a sufferer of Alpha-1 Antitrypsin Deficiency - an extremely rare, inherited genetic condition. It affects around 25,000 people in the UK and is passed on through family lines. As the name suggests, it is a deficiency of alpha-1 antitrypsin (AAT) in the blood stream. AAT is an enzyme that is produced in the liver and helps to protect tissues of the body during infections. The low level of AAT in the blood occurs because the alpha-1 antitrypsin is abnormal and cannot be released from the liver at a normal rate, which then leads to a build-up of abnormal AAT in the liver. This can cause liver disease and a decrease of alpha-1 antitrypsin in the blood stream that can lead to lung disease. In people with Alpha-1, there is a fault in the gene that is on chromosome 14. This fault causes AAT to be misshapen and it has been discovered that the molecules of protein stick together to form polymers. This malformed protein then becomes stuck in the liver and cannot get into the blood stream. (alpha1.org) 

  

Sufferers of Alpha-1 are at a high risk of developing severe emphysema, often in their forties and especially if they smoke, and this is by far the most common disease caused by the deficiency. Being diagnosed with Alpha-1 means that the sufferer has inherited a faulty gene from both parents, so that both chromosome 14's have the faulty gene. This was the case for Alison Wood who was diagnosed with the rare condition back in 2007.  She now suffers with Emphysema and Bronchiectasis and has a significantly reduced quality of life as a result. 'Having Alpha-1 has a big impact on your quality of life. Everyday activities such as dusting and cleaning, and taking a shower leave me breathless'

 

Alison's late brother, Paul, suffered with asthma as a child which affected his health.  At the time doctors had just started researching alpha-1, so the whole family were tested, including Alison who was aged 4 at the time. Both Alison's parents tests revealed each was a carriers of the faulty gene, Paul inherited a faulty gene from both parents and was diagnosed with the full  alpha-1 deficiency, their eldest brother David inherited no faulty genes, and Alison inherited one faulty gene and was diagnosed  as a carrier only. Due to the lack of knowledge surrounding Alpha-1, a misdiagnosis of asthma is very common, meaning that sufferers are not receiving management for alpha-1 early enough to try and prevent the diseases and illnesses caused by the deficiency before they do severe damage to lung function. 

 

Alison was later re-tested at the age of 38 due to recurrent chest infections, and she was diagnosed with the full deficiency. 'At the time of my re-testing, my youngest daughter was three and my oldest was ten. Being given my diagnosis was very daunting, especially because my girls were both so young, and as a mum there is so much you want to do with your kids, especially your daughters. I was told that I wouldn’t be able to see them grow up, get married, have babies if I didn’t stop smoking– it was a horrible time. I quit smoking that day. My late brother Paul, who sadly passed away in 2014 while receiving a lung transplant, also had Alpha-1. I had seen how the disease made his quality of life reduce rapidly, and I was worried that my health was going to decline at the same rate.' 

 

Although Alison can still get about, her 38% lung function makes it incredibly difficult for her to complete day-to-day tasks, 'I struggle to do everyday household chores such as bending to load the washing machine, vacuuming or carrying things around, especially after shielding since March due to COVID-19, I haven't been exercising my lungs as much as I should have, which I feel has made it worse to get about.'

 

We asked Alison what it was like as a mother of two to have such a limiting disability, 'It's heart-breaking. You can't do things with your children that other parents can, like play sports, take them swimming, even going shopping. With the girls being so young when my health started to decline, they couldn't understand why their mum couldn't do the same thing with them that their friends' parents were doing, and that's what I found the hardest.'

 

'As a mother with two daughters, the thought of my disability getting worse as they grow up is sad for all of us, so we try not to think about it too much. It's hard as a mum, as you always want to be there to protect them, no matter how old they are, and seeing as my disability will become worse with time, it's just hard to know that I can't help or be there as much as other mums can.  Both my daughters have been tested and are carriers too.  There is not enough research or evidence to prove or dis-prove whether smoking affects carriers, so it is imperative that neither of them put themselves at risk by smoking'

 

When asked about the impact Alison's disability has had on her daughters, she said, 'when they were younger, naturally they didn't really understand what was going on. All they knew was that I would get out of breath when walking or doing activities, but my disability wasn't as bad back then. Now, especially after my brother, their uncle, passing away from the same illness, I think they understand the severity of it. It has definitely been difficult for them both during lockdown, as I am classed as clinically vulnerable so the whole family has been shielding to keep me safe. They haven't moaned about it once; they're really understanding about it like that.'

 

Alison is currently on a trial with the QE Queen Elizabeth Hospital in Birmingham for a new drug that is hoped will slow down the progression of lung damage.  If this is proven, then it may get licenced to be used in the UK.  The results of the trial won't be out until late 2021 but there is no guarantee that it will be approved for use in the UK.  There is currently a drug licenced in other countries that slows the progression down, but the cost is too much so has not yet been licenced in the UK.

 

Alison had one piece of advice to pass onto other mums who may be struggling with a disability, 'try not to get too wrapped up in what may happen in the future, take every day as it comes and enjoy every moment with your children, no matter how big or small. Always focus on creating memories that they will cherish for the rest of their lives, even if it's the simplest thing like baking together or watching a film. Also remember not to be too harsh on yourselves when you can't do things that others can - it doesn't make you any less of a great mum, we're all amazing in our own way!' 

 

For more information and support on being a parent with a disability, visit: http://disabledparentsnetwork.org.uk