Common Misconceptions about Type 1 Diabetes

As with everything, there are so many misconceptions about type 1 diabetes, mostly made worse by the stigma the media causes. Here are some questions and comments someone living with type 1 diabetes can get:

At least its not cancer
Cancer and Type 1 Diabetes are not comparable at all, and by saying this you are making light of how hard type 1 diabetes can be to live with!

Invisible Disability - Someone living with Type 1 Diabetes
looks the same as everyone else!

Wow, you must have ate too much sugar as a kid!
Type 1 Diabetes is an autoimmune disease, which means the immune system essentially attacks itself, it has nothing to do with eating too much sugar or being overweight.

You can reverse diabetes if you lose weight, can't you?
This is a confusion between type 1 and type 2 diabetes. With type 2 diabetes, it can *sometimes* be put into remission through dieting, but with type 1 diabetes you are insulin dependant for life, as the cells in your pancreas don't work anymore.

I would rather die than inject myself everyday!
This one is quite insulting actually. If I didn't replace the insulin my body doesn't make, it is a death sentence. You get used to it, because you don't have another choice!

Can you catch type 1 diabetes from someone who already has it?
No! Diabetes isn't contagious, it is genetic.

Should you be eating or drinking that because of your diabetes?
People with type 1 diabetes can eat anything, they just have to know how many carbohydrates are in the food, give insulin accordingly and know how each food affects their own body. We are recommended to eat the same healthy diet as everyone else!

Someone living with type 1 diabetes can eat and
drink anything (within reason!)

Basically, Type 1 Diabetes should not hold you back. It is hard to live with, it requires constant control, but you can live life to the full nevertheless. Someone with type 1 diabetes will be dependant on insulin to live for the rest of their lives, it's not something you can grow out of.

Asking questions is a brilliant way to get to know what someone goes through, so please keep them coming, but also be sensitive about it!

Until Next Time,

Alyssa x

Natalie Balmain - More Than Just a Type

I asked my friend, 'Natalie Balmain', who is founder of Type 1 Clothing, to write a blog for me talking about her life as a whole, both positive and negative. When living with type 1 diabetes, it is easy to let it take over , and Natalie talks about how living with type 1 diabetes has played a part in hers. Please read it until the end! - Alyssa

"I've been thinking of how to start this blog for a long time. I don't generally find it difficult to write about my opinions or experiences, but I do find it hard to be vulnerable.

You see, I have a lot to be vulnerable about. I've felt every hollow, stinging, shot-to-the-heart pain you can imagine, but because the foundation of my soul lies in loving everyone, (whether they be an old friend or someone I've just met on Facebook), I've never wanted anyone else to feel the pain I've felt. So, I never shared it.

When you watch my vlogs, or see me speak at an event, you'll see that my message is a positive one. My drive is to inspire others and make everyone around me happy. By nature, I'm a people person, and if I only achieve one thing in life it would be to help everyone else know that they can overcome anything, and live happy, fulfilling lives. Especially my type 1 family, because in all honesty, they are the some of the truest friends I've ever had.

So it upset me recently to hear stories from some of the young people I seek to inspire, saying that either friends, family, or they themselves, have used me as an example to demonstrate that 'controlling' type 1 diabetes should be easy, and if I can manage it so well, why can't they? And my heart sank. I've always sought to uplift people with the positives, but in that moment, I realised that the negatives are just as important. So, I decided that I'm going to share mine.

Firstly, I would like to make it very clear that controlling type 1 diabetes is NOT easy. My favourite meme on the subject describes it as "Walking a tightrope. Except you're on fire, the tightrope is on fire, and everything is on fire". Yup, pretty much sums it up. Over my 12 year tenure as a T1D, the most part was spent with an average HbA1C of 12. That's pretty horrific. I've had touches of neuropathy, signs of kidney damage, and a blue-light trip to hospital in 2017 in severe DKA with a blood PH of 7.0 (when I later saw the healthy blood PH range chart, 7.0 was labelled as 'Death').

Its only in the last year and a bit, and only because I've been fortunate enough to have access to technology like my Dexcom CGM and an insulin pump that I've been able to bring my HbA1C down from 12 to 8. And even that brought on haemorrhages in my retinas. It's still not perfect, but I'm getting there. Perhaps I'll even manage to avoid some complications, despite being told at diagnosis that complications were 'inevitable'.

So, maybe some of you reading this are not type 1 diabetics, and maybe you need an explanation as to why I'm still struggling after all these years to 'manage' my condition. (I can't tell you the number of times I've wanted to scream in someone's face when I've told them I'm a type 1 and they have responded with 'but it's manageable isn't it?')

Well the dirty little secret is, none of us are JUST type 1 diabetics. We are human beings with the same real lives and stresses and emotions as any of you, AND we have type 1 diabetes on top of that. Perhaps if none of us worked, or cried, or danced, or ever had a heartbreak or lost a loved one; if we had no lives at all, then maybe we could all have perfect blood glucose levels all the time. But life isn't simple like that.

On top of the fact that everything we eat has a different effect on our levels (even the same food eaten at different times of day requires different doses); exercise, having your period, stress, excitement, heat and so many more things impact your blood glucose, and that's before we even factor in mental health and life.

Mental health is the biggie for me. You see, I suffered with depression even before my type 1 diagnosis. When I was 5 years old, I lost my Mum to cancer. I only found out recently from a cousin that I didn't speak for months after that happened- my brain had blocked all those early childhood years out. 

And maybe it was the fact that I didn't have my Mum around, that I was desperate to be loved. Whatever the reason, being desperate is a sure-fire way to NOT make friends. I remember being at primary school and hearing my child minder ring up other kids’ mum's to invite them round to play. I could only hear one side of the conversation, but it was always "Ahhh.. ok, never mind", as those kids' parents made excuses for their children who didn't want to play with me.

Over the course of my young adult life, I got into trouble a lot. I hung out with bad crowds just to feel part of something. When I got my diagnosis of type 1 diabetes, the guy I had been seeing for just a couple of months couldn’t cope with it (and my severe depression), but I guess he felt too much pity for me to break up with me, and so I stayed in a 7.5 year relationship with someone who cheated on me from the first day to last, hoovering up any shred of self-worth I might have had left. (I'd like to add at this point that I don't actually blame him, we were both young and my diagnosis and depression was too much for either of us to deal with well).

When I eventually found the strength to leave, after a period of living on my friend's sofa because I had no home and no job, I got a place by myself and let strangers party in my flat just, so I wasn't alone. I ended up being assaulted in my own house. Since then, I've kept myself to myself because being alone has seemed preferable by comparison.

Even writing this now, I feel an overwhelming urge to apologise to you all for burdening you with this. But perhaps if I lay all my cards out on the table, it might make it easier for you to understand why managing type 1 diabetes isn't just about finger pricking and injections.

You could probably understand why people who have gone through things like that might have mental health issues, or even feel suicidal. But let's put that into perspective: what if someone with those struggles ALSO had type 1 diabetes, and was responsible for keeping themselves alive every minute of every day? Could you understand why that person just might not always feel like it's worth the effort? Why do we try so hard to stay alive when life itself can be so tough?

Now I'm not suggesting for a minute that everyone has been through things as extreme as I have (although many may have dealt with worse), but every one of us has struggled at some point. We've all lost loved ones, dealt with heartbreak, been fired from jobs or fallen out with friends. We all have good days and bad ones too. And those struggles impact us emotionally, and in turn, affect our strength and our motivation to look after ourselves. How many of you have gotten drunk to cope with things? You know it's bad for you, but you still do it. Well, type 1 diabetics know that not being on top of our control is bad for us, but we are only as human as you are.

So perhaps next time you judge a type 1 for not having good control, remember that berating us is only adding to the problem. Child or adult, all anyone in this world really needs is love, and support.

Love Natalie"

First dates with Type 1 Diabetes!

When you live with a physical disability that is visible to the people around you, it is hard to control how you are viewed because of previous stigma. Having an invisible disability means that you can control how people view you, and it means you have to decide how and when you let people in on what you deal with. On a normal day, I am very open to talking about living with Type 1 Diabetes, however when you go on a first date, it is very different!

Going on any first date is really nerve racking to begin with, knowing how to conduct yourself and how to act. You have to try and impress without being over the top, try and get to know the person your dating, and health issues aren't always on the top of the conversation agenda, however often they are really important to bring up. When I try to impress someone, I personally don't feel it is very 'inviting' to tell someone that I wear a cannula and an insulin pump 24/7, that I can get very easily get unwell and I might need someone to look after me. I always get afraid that they may feel it is more trouble than it's worth.

When I first started dating, I never brought it up until the second date, as I honestly didn't know how to handle things in that situation. Even testing my blood sugar and taking insulin, I would go to the toilet and take it to hide it more, but I feel now that it wasn't the best tactic to take.

I then tried to be honest about it, and mentioned it in the first date, but I was nervous about doing this and I made too big a deal of it, made it a big drama and went into the details. Living with Type 1 is a big part of my life, but it is only a small part of me and my personality. By doing this I made it seem like it was the only major part of my life.

I now tend to wear a small part of diabetes show, to try and give the impression that I have nothing to hide (which I don't!). For example, I will have my insulin pump visible by clipping it to my skirt/trousers, or I'll have my cannula from my insulin pump showing on my belly. I don't even mention it until my date asks, and I just get on with things, check my blood sugar and take my insulin as normal. Even though I'm not often confident about opening up fully, confidence is key because it isn't a topic I can or should avoid at the end of the day.

I have very limited experience on this topic, and this only really counts if you go on a date with someone you've never met before, but it has been a bit of a nerve-racking experience for me in general. First dates are difficult in the first place, but I added extra pressure onto myself that I really didn't even need to!

Until next time,

Alyssa x

Pregnancy and Type 1 Diabetes

I normally write this blog about my personal experience with Type 1 Diabetes, however I am very aware that my experience can be very different from someone else. A big topic that I haven't had any experience with is "Pregnancy when living with Type 1 Diabetes", so I asked my friend Lindsay to write about her experience of pregnancy!  - Alyssa

I was diagnosed with Type 1 Diabetes age 6 and I remember being told several times as a “grown up” in clinic “you really must tell us when you decide to start a family”,  “ diabetics can have problems in pregnancy”,  “ diabetics are prone to big babies and complications during pregnancy"! My thoughts: "Gee thanks guys really make it sound like good fun, and yeah I am now petrified"! 

My husband and I spoke about kids and we knew we wanted a least one (coming from a big family I wanted more but one was a good start). 

I am fortunate to have an amazing consultant, who supported me pre-pregnancy, which was a lot of work. When I was told I would have to keep bloods between 3.9-5.2 and no higher than 7.8 two hours after food, I did think, "is this really for me"! My diabetes has never been textbook and never will be I am sure! I have struggled a lot with DKA (Diabetic Ketoacidosis) in the past and I was not the strictest of person when it came to my diabetes. The thought of this really did scare me but my consultant had given me a script for folic acid (ideally we have 5mgs of folic acid 3 months before trying to conceive) so she must have been happy for me to try. Diabetes has never stopped me doing anything else in my life and why should it stop me doing the most important “job” I want in my life!! 

So I came off the pill and fell pregnant straight away!  Oh my word, I have never been so nervous, scared and anxious but also happy and excited about seeing 2 wee blue lines. My Husband knew first, but very quickly afterwards my consultant and dsn (Diabetes Specialist Nurse) phoned to warn them they were not going on holiday for the next 9 months!! 

Because we found out very early we had a bit of an agonising wait until our first scan (you generally get an early scan at between 6-8 weeks to check viability and everything is in the right place). This can be abdominal and/or internal scan due to size of sac. I had to have both at this time. I was told there was a sac there but that it was very early days and too early to see anything else (slight disappointment) but I was also told I must have got my dates mixed up. I knew that I hadn’t though! This is where my job as a nurse started to become a hindrance, because I knew potentially what this could mean but no one was saying anything to me. So I went back after a few weeks for another scan and blood tests, and there was still no growth within the sac. I had unfortunately had a miscarriage. I was completely devastated, and yeah, I automatically thought it was my diabetes fault. I hit rock bottom with my mood, and depression set in, I did not care about diabetes as in my head it had caused all this hurt and grief I was suffering, and I hated it!  It was horrible. I was told officially by doctors that my diabetes was probably not to blame, and that 1 in 3 pregnancies end in miscarriage, which is a scary scary statistic! 

After a while, my husband and I decided to try again so in January 2014 I peed on that stick again, and there were 2 blue lines: “oh f***”! I was so so nervous, but was I ready for it! My diabetes team were again amazing, I was seen every two weeks in clinic right from the start, and we were working on getting tighter control etc. When it came time for that early scan, I was completely and utterly petrified! I jump onto the bed, wriggle my trousers  done a bit, have freezing cold Jelly on my stomach, and I couldn't even look at the screen. Then those magic words were said“do you see that flicking white dot, that is your babies heart beat and it all looks perfect”. I have never felt joy like that before. There was so many happy tears, I just had to get to next milestone at 12 weeks! 

Those early days seem to drag but I worked on keeping my diabetes in control as much as possible. I would beat myself up if my blood sugar was not in “target”. And oh my word it was tough at times, who knew bread could spike your blood sugar so much after eating it! My appointments with my consultant, dsn and dietitian continued every 2 weeks and I got a monthly hba1c (average blood sugar). Things were improving, however, due to outcome of previous pregnancy I was continually on edge! It was horrible, I wanted to get my hopes up, however I was scared too! So it felt like I was just going through the motions!

The dreaded scan day came again, so many tears that morning before we got to the hospital. I was prettified. I got there, jumped up on the table... jelly applied to my stomach and then we heard the most amazing sound ever! We heard a heartbeat, yep you guessed it, more tears. But happy ones. My baby looked the right size, actually measuring 13 weeks and a day. Heart beat was nice and strong. was amazing feeling being handed our scan pictures.  Everyone was telling me, “ now you can relax a bit”! Were they being serious, I was type 1 diabetic and pregnant, relaxing was not on the cards!

The bi-weekly appointments continued, my hba1c was being done every month. I dreaded this result more than ever because if it was high, I didn't know what damage I could be causing my little one. I would regularly be really upset if my bloods went high thinking of the damage I could be causing! Emotions and pregnancy are not a good mix at the best of times BUT add in the guilt of all of this as well, it was not good and I was often in tears due to this. My 20 week scan came and everything was perfect, our little boy was cooking nicely and measuring right on target. My consultant keep saying to me that I was doing a fab job, but did I believe her?! Nope, I was not hitting the “targets” all the time and I was striving to be better. My hba1c was 6.2% (44mmol/mol, right on target) which is the best it has ever been, but it still was not good enough in my head. 

At 24 weeks we had another scan, but this time it was checking the babies heart. This was so strange,  different from an ultrasound scan as we did not see our wee boy, we just seen all his wee heart chambers pumping blood around. All was fine no problems at all, another hurdle overcome! Could I dare to dream? My dream of being a mum was actually coming true. 

At the other scans at 28 weeks and 32 weeks, everything was still spot on, apart from my little monkey deciding be good fun to turn into breech position. If I was to have my dream of a natural delivery he needed to turn round. At 36 weeks he was still breech, so we were given a date for a planned c-section, with the option of a scan that morning to check if he had moved, and if he had moved I could be induced and have a natural labour. The date I was given was 11th September... no big deal, you might think, but it was my birthday that day too. This would be the best birthday present ever. I would be at 38 weeks and 2 days at time of delivery. I was so proud of myself for getting that far in a pregnancy with no complaints, no mega problems. Of course, I had hypo, I had to change my basal and insulin to carb ratio on my pump a lot during pregnancy as insulin requirements change SO much. But I honestly had the best control ever during my pregnancy, and I was determined from the start that I was not having a big baby. I was not going to be another “ diabetic mums have big babies statistic”. Yeah, my diet changed a bit during pregnancy too more low GI (glycemic index) foods to avoid the blood sugar spikes after meals but, you know what, it was not as bad as people make it out to be. Diabetes and pregnancy takes planning and is very time consuming for the 38-39 weeks but it can be done!! 

Anyway, on 11th September at 8am I went to the hospital, having fasted for theatre. They had wanted me to stay in the night before because I was “high risk”, however I stressed to them that I had been a “high risk pregnancy” right from day one and because it was my birthday the next day, I would be going home, going out for my dinner and be in the morning! Yeah I can be stubborn at the best of times!

I went to theatre for my c-section, peanut, as we called him, had not moved from the breech position! The whole experience was very calm and relaxed in theatre, my husband was in with me too, I had my insulin pump on still, no sliding scale and I knew what to do with basal rates etc as soon as baby was born!

At 10.17am our gorgeous LITTLE baby boy (7lbs 6oz) Logan James Milligan entered the world and he was perfect!! I've never been happier in my life! And he was tiny! My husband got the first cuddle and then me, and it was the best feeling in the world!

His blood sugars were “borderline low” all day but the midwifes were happy for him to stay with me and just try to encourage feeding. Come 10pm I was not happy and I wanted a doctor review, as he had borderline low blood sugar all day and he was a very drowsy baby! The decision was made to take him to neonatal department overnight and tube feed him to try and help his blood sugars (yeah I felt mega gutted but I knew this was the best outcome). The next day his blood sugar was fine and I had my wee boy back where he belonged beside me. 

He has been perfect since, and now I have a wee whirlwind of a 4 year old that I would not change for the world. He has no medical issues at all, yeah he has a slightly increased chance of having diabetes but we would cross that bridge if we came to it. 

So yeah diabetes pregnancy can be tough, stressful, frustrating and lonely at times BUT it is doable. I had the best control ever during my pregnancy, and it was not as bad as I thought. Would I go back for another go... possibly just need to wait and see.  

Thanks for reading! If you have any question etc I am happy for to answer, or if it is of a personal nature send me a wee personal message: mcdougalllindsay@hotmail.com

The Difficulties I Face Daily

I just want to be as honest as possible, and that is the reason for this blog. I often give the illusion that I am doing well, and when questioned, I almost always say that I am fine, even when I'm not. 

I am at a stage in my life where I am independant, I do a lot myself and I am very busy, but I walk about life terrified. I desperately want to be a model patient, because Type 1 Diabetes is *technically* controllable, but when it is complicated with Epilepsy which gets triggered with low blood sugar, like mine is, it gets tricky. On one hand I desperately don't want to let living with diabetes affect my life, I also don't want to end up having a seizure, which would impact on my life and the lives of the people around me.

A smile can hide a lot

In my mind I know that having high blood sugar is bad for me in the long term, it can cause complications such as eye damage and kidney problems, however it is hard for me to weigh them against the very pressing and iminant risk of having a seizure, so I make my blood sugar go high when I have something important going on that I don't want to ruin. Of course this makes me feel horrible, cranky and lethargic, but I don't feel scared and short term, that is really important.

At the beginning of the year, I had an amazing piece of technology called a CGM (continuous glucose monitor) which was a sensor that I wore on my arm, and it esentially tests my blood sugar every 5 minutes and sends a signal to my insulin pump. It would then alarm if my blood sugar was dropping or rising too fast, and if my blood sugar did go low, it would suspend my insulin flow. This was such a peace of mind, it allowed my blood sugar to be in range without me worrying. I knew that if I had a seizure whilst I was by myself, I would be okay because my blood sugar would eventually come up itself. I don't have this anymore, and I am trying to get back from the hospital, but it has been really difficult for me to adjust to having the safety net of having my insulin stopped to bring my blood sugar back up, to now having to manually test my blood sugar, which really isn't the same.

An old picture of a CGM on my arm

 One of the main things I struggle with is not wanting to burden anyone. My family members, especially my sister and mum, have had to help me when I have had seizures before. My sister tells me all the time that she doesn't like going places with me by herself in case something happens to me, and I don't want to put her or anyone else in that position.

I am not saying any of this for pity, I want to be honest. I don't want to sugarcoat living with Type 1 Diabetes, I have both good and bad days, and I know that it is okay not to be okay, but that doesn't make things easier. I don't want to write about my experience with health and only write about the positives, because that just isn't reality. I just want to show people that although I go through a lot daily both physically and psychologically, I still can do anything I put my mind too. Also everyone's health is different, so this is just my experience of living with both Type 1 Diabetes and Epilepsy, but it is important to not judge anyone, because you never know what people are going through.  

Until next time,

Alyssa x

NHS Scot 70th Anniversary - Meeting Prince William

Last week I got invited to attend the NHS Scotland 70^th Anniversary drinks reception, which was such an amazing opportunity for me, as Nicola Sturgeon, important MSP’s, and the Duke of Cambridge (Prince William) were attending and I got invited to speak to them! I had no idea which member of the royal family was attending until I arrived, what a lovely surprise! I got invited because I organised the Young, Fun and Type 1 conference, and because of my volunteering with the charity Young Scot, for which I volunteer on a project called Communic18, focused around the Year of Young People. It was an opportunity for me to show my knowledge about the NHS and mental health services and continue to advocate for the care I believe people should receive.

Table picture with Nicola Sturgeon

Having a conversation with the First Minister

As I had received an invitation to not only attend but also speak to the honoured guests, I had to arrive early. I was shown into a cordoned off area with tables, and every table had a different theme. The table I was sat at was centred around mental health, and I was sat with four other inspiring individuals who have done amazing work around mental health, and also Clare Maughey, who has just been appointed the Minister for Mental Health in the Scottish Parliament. I was so nervous for the event that even before everyone arrived I had already knocked over my glass of water!

Meeting Clare Maughey, Minister for Mental Health

A picture of my table

 When everyone started arriving, it was surreal. I felt like an animal in the zoo, purely because I was sitting in the cordoned off area, and everyone else was outside of this, looking in and waiting for things to happen! The organiser got on stage and explained the proper procedures about how to act when the Duke of Cambridge arrived and spoke to us. We could give a small courtesy by crossing our legs and giving a wee bob, the first time we speak to him we call him ‘your royal highness’, and after that we call him ‘sir’. I felt so nervous that I was sure I would forget all of this! We were also told that we had to stand in a semi-circle, so the Duke of Cambridge could talk to everyone from my table together.

Having a conversation with Prince William!

Having a conversation with Prince William!

It sounds so silly, but I am still totally starstruck to have met Prince William. He is such a personable person, really made us all feel at ease, and he really knows a lot about mental health. We were talking about mental health, and the need to educate people in school so that stigma for mental health is reduced, and how peer support is really helpful for mental health, but not a substitute for proper mental health care. He then talked about his own experience with the armed services and mental health, and how he sees a lot of gaps in services from this perspective. It turns out that he actually overran his time at the event and was almost late for dinner with the Queen, so he must have had a lot of talk about!

Nicola Sturgeon

After the Duke of Cambridge left, we got to mingle with the other guests of the party, including the First Minister, Nicola Sturgeon, and all the amazing guests from the NHS and wider. Hearing the work that everyone is doing everyday to make services better for everyone was inspiring, and I think the event was fitting to celebrate all the small but impactful work that everyone does.

I am still so honoured to be invited to this event. I am so grateful for everything that the NHS does for me, and I got to celebrate the NHS’ birthday in style. I know that living with Type 1 Diabetes and all the pain that comes with that is hard, but on this occasion it has provided me with a once in a lifetime opportunity that I wouldn't have had otherwise. This was a once in a lifetime opportunity, a bucket list item ticketed off the list, and I wouldn’t have changed a moment of it.

Until Next Time,

Alyssa x

Why I'm Organising the "Young, Fun and Type 1" Event!

As most of you know, my name is Alyssa Faulkner and I am the organiser of the ‘Young, Fun and Type One’ event in Scotland. The event is for young adults aged 16-30 living with Type 1 diabetes in Scotland, and there are going to be workshops and presentations on a range of topics, including travelling with Type 1, pregnancy and parenting, sports and university. I am in this age group (I’m 19) and I think this will be an amazing event because it is organised by young adults for young adults, the majority of the speakers and volunteers will be young adults, and it isn’t an event where health care professionals try and guess what they think young adults want.

I noticed that a lot of the programmes run by Diabetes UK are more aimed at children living with Type 1 diabetes and their families or older people with diabetes, and while these are very important programmes, I think it is important to have something purely tailored for young adults, where they can be themselves and where everyone around them will understand, and hopefully make some friends. Originally, I was going to take my idea to Diabetes Scotland and hope that they organised something, however I ended up thinking “Why don’t I organise it?”. I have lived experience, I have been to a couple of events similar and although it would be a challenge, I believed I had the capacity to do it.

I pitched the idea to Diabetes Scotland, and after a lot of negotiating about everyone’s roles, the ‘Young Fun and Type One’ event is going to be held on the 23^rd June at the Glynhill Hotel in Renfrew! As I am part of the Diabetes Scotland Young Leaders project, this event is one of the projects that is included in that. This is a free event, so if you fit the criteria, bring a friend or family member (they don’t have to live with diabetes or in the age range), register here, and I’ll see you there!

https://www.diabetes.org.uk/in_your_area/scotland/16-25/young-fun-type-1-event

I was diagnosed with Type 1 Diabetes over 5 years ago now, when I was 14 years old. When I was diagnosed, I feel I was a bit naive about the challenges that were ahead of me, and it wasn’t for a couple of months that I realised that living with Type 1 diabetes was difficult, and that I would live with it for the rest of my life. I still remembered what it was like to go to school, have lunch without having to give insulin, go to P.E. and not have to check my blood sugar and reduce my insulin. Just small things that all add up.

I felt a bit lonely for the first months, because it was always me having to explain to other people why I needed insulin and no, I couldn’t go to the toilet to give my injection because it made you more comfortable. I was never around people who fully understand, and I think that’s why when I found some of the online groups for teenagers with Type 1 diabetes, I was so relieved. I could vent and ask questions to people who understood.

On that group, someone posted about camps that Diabetes UK run called ‘Care Events’ (which are now called Type 1 Events) and the one I applied for was a week-long one for young people aged 16-18 living with Type 1 diabetes. It was an incredible experience because not only did I make life-long friends, it was amazing to have a full week of not feeling like the odd one out, because everyone was testing their blood sugar and taking insulin.

This is why I wanted to organise a day event for young adults living with Type 1 diabetes, because I have experienced what it’s like to feel a bit isolated with Type 1 Diabetes and also experienced what it is like to have a network of people around you who understand, and I want a lot of people to experience that!

See you there, and until next time,

Alyssa x

University and Applying for an Extension

I was recently talking to a psychologist (not diabetes trained) who couldn’t understand why my blood sugar should ever be high or low. She told me that she just wanted to shake me and make me try harder. She was COMPLETELY shocked when I told her that it isn’t as simple as doing regular exercise, having a healthy diet and taking a daily dose of insulin. She couldn’t believe that things like hormones (such as a woman’s monthly cycle, adrenaline, endorphins, etc), heat and stress all affect blood sugar. It is so frustrating that health care professionals have this view, and this all contributes to the misconception that having high and low blood sugar is always the fault of the person living with type 1 diabetes, instead of a factor out with their control.

These past few months have seen a few major changes for me. I got a new insulin pump, however when I got that I got stopped on the Continuous Glucose Monitor (CGM, it continuously tracks my blood sugar and alerts me if my blood sugar is going low or high). I have had the CGM for 4 years, and it is a big change for me. I had it funded because I struggled to control low blood sugar and sometimes had seizures because of it, so my safety blanket was taken away.

I have just completed my 2^nd year of University, and this came with a lot of stress. During the semester, we have regular classes and contact time at the university, and sports clubs have regular training, and having this regular routine makes living with type 1 diabetes easier to handle. Having a routine with type 1 diabetes really helps, as you don’t have new situations to tailor your insulin doses to everyday. Having an insulin pump does help with this, meaning it is easier to change insulin requirements, as it can be done at the click of a button, but it is such a hassle and you don’t always get it right.

When the semester came to an end this year, so did classes and regular sport training sessions, and it is more difficult to handle diabetes (in my personal experience). It is easier to oversleep when you don’t have anywhere specific to be and it’s easier to avoid regular exercise, both things that affect diabetes control for me, and increase my blood sugar. After the classes finished I had to write a few assignments for university, something that required concentration and a lot of thought, and something that I couldn’t do when I had high blood sugar, which came from the lack of routine.

It takes time for high blood sugar to come down, insulin takes 20 minutes to start working in the body and is active in the body 4 hours. A symptom of high blood sugar is low mood, it makes me feel so angry and sad at everything, and it is impossible to get any work done when feeling like this. With the fatigue and lack of concentration that comes with having high blood sugar, lack of routine, the low mood associated with increased blood sugar and the time it takes for blood sugar to drop, I was finding it very difficult to write coherently. I was getting come work done, but it takes a lot longer to concentrate and it often doesn’t make too much sense.

Netball!

This is why I decided to apply for an extension on the remainder of my essays. I was becoming so stressed at the looming deadlines that it was another factor that was affecting my blood sugar, and I needed to be able to complete my assignments calmly, without too much stress. I also needed to stop and take care of myself, some time to relax and de-stress, otherwise I knew that I would end up being completely overwhelmed and burn out completely.

I decided I needed an extension for my assignments the day after the deadline, however I still applied and hoped for the best, continued to write my assignments and thankfully I got granted the extension request. I got an extra 2 weeks for the remainder of my assignments, but I didn’t want to abuse this, so I only used what I needed from it. I took time to myself because I knew that I needed to relax, and I finished my assignments only having gone 2 days over the extension deadline. The pressure was lifted, and because I wasn’t as stressed about a looming deadline, and I was able to concentrate and get my head down.

I am aware that not everyone living with type 1 diabetes has these problems with high blood sugar. I am finding it especially difficult right now to keep my blood sugars in range, and hopefully in time I will be able to handle things myself a lot better, however right now I knew needed to ask for help and accept that it is okay to do that. I can still do everything, but when I’m feeling rotten, I find an easy task nearly impossible, and so I do need to sometimes focus on my myself and my health.

Until Next Time,

Alyssa x

Admitting it to Myself - Weight and Diabetes

I moved to university in September 2016. I went straight from school, into university halls, and it was a big adjustment. Having never lived anywhere but in my mum’s house, having to fend for myself was pretty weird, but I was glad I did. With moving out, to a completely new city, meant that I had to met new people and make new friends. When I was around new people, I often tried to hide the fact that I had Type 1 Diabetes, often being really open about it online, behind a screen, but not testing my blood sugar in front of people, or taking out my insulin pump, because I didn’t want any of my new friends to see that side of me, the vulnerable side. It sounds so stupid explaining it, because no one has ever said anything against me being diabetic, but the truth is that I often ignored it when I was with other people, and that then led me to continue ignoring it even when I was alone.

Something that a lot of people don’t realise, is that having high blood sugar feels rubbish. You feel so tired, like your legs are full of led and they don’t want to move. You get unbearably thirsty. You can’t concentrate on anything even the simplest of tasks are difficult. Reading isn’t possible because you read one line, and then you forget the previous line. One prominent thing that happens to me is my mood becomes so low, I get angry and sad at everything, even the smallest thing would set me off. That would cause me to lock myself away in my room so that no one would be on the receiving end of one of these moods.

Another prominent thing that occurs from having prolonged high blood sugar is weight loss. I’ve never been a skinny girl, but all of a sudden, I was slim, I felt good wearing a crop top and a short skirt, and that felt amazing. It was false though, because what I didn’t realise at the time is that I had lost the weight very unhealthily. I still ate junk food all the time, barely cooking any meals and relying on unhealthy ready meals for sustenance, barely exercising, and I was still a healthy weight. Things never clicked for me that the reason I was maintaining a healthy weight was because I was neglecting my health, missing doses of insulin and not checking my blood sugar.

Let me say, having periods of high blood sugar can be very dangerous, but as long as I was having small amounts per day, I can get by without intervention from say the hospital. So I was getting my background insulin, which is continuously dripped into my body via my insulin pump, and not giving any insulin for food.

After a while, around my second semester of university, I realised that the reason I was losing weight, and my mentality changed. I started purposely “forgetting” my insulin doses, knowing that I would remain slim, possibly even lose more weight. I did this nearly every day, it was almost an obsession. Most of the time, I would only do it if I ate something particularly unhealthy, almost binge eating and then not giving insulin so that those calories wouldn’t count. I went to the hospital and got my long term blood sugar tested (the test is called hba1c) and it was 12.9, which is extremely high and quite dangerous. I became so unhappy, because although my weight was being stabilized by my habits, my mood was so low all the time, I couldn’t concentrate on anything, and I just locked myself away. University was becoming so hard, as it took me twice as long as everyone else to understand things.

When assignments were due, I would make sure my blood sugar was normal, so I could concentrate, go to the library and work, then come home and immediately make my blood sugars higher again. I would attempt to go on nights out with my friends, but I would feel so tired the whole night that I would end up coming home early myself anyway, so after a while I stopped trying. It was always worse when I know I didn’t have anything specific to do that day, so I wouldn’t bother doing anything except eating and making my blood sugars higher.

Over summer 2017 things got a lot better. I was so busy all the time that I didn’t have time to be unwell, even have a chance to think about things, so I just got on with it, gave my insulin but still ate the same kinds of food as before. I felt so much better in myself, I was so productive and that’s the way I like it. I was starting to get so many opportunities, I couldn’t waste them being unwell. This was all good, but a fact that isn’t well known about insulin is that it is the main fat storage hormone in the body, and because I wasn’t eating well, meaning I needed more insulin, I gained all the weight I had lost and put on some more.

I have recently started to do more exercise, the main reason being to up my fitness levels, but another incentive was because I wanted to lose some of the extra padding I have gained. The problem is that I'm still not eating very well. Although on the whole my blood sugar is better, I'm still binge eating quite a lot and not giving insulin for it. I find it so difficult because I have the tool to lose quickly really fast, right on my finger tips. All it takes is to omit my insulin even once, and the temptation is often so strong to do this. In the moment, it often feels like the best of both worlds. I get to eat as much as I want, and not have any weight gain.

This was really hard for me to admit to myself, and it's even harder to write about. I am currently trying my hardest to lead as healthy a lifestyle as possible. I am fully aware that my actions are destructive, and can lead to further complications, however sometimes in the moment the long term issues aren't on my mind. Right now I am concentrating on exercising and eating better, and hopefully my blood sugar will improve with this. Although this is a daily struggle, I know that I can't continue this lifestyle.

Until Next Time,
Alyssa x

The Injustice of Minumum Wage

I work in the food industry, and that means that as a 19 y/o receiving minimum wage, I get £5.60 an hour for my labour. In 2017, the living wage was set at £7.50 for those aged 25 and above, and this was implemented to make sure that those working had enough money to live on. This doesn't sit right with me, because by putting an age limit on the living wage comes an assumption that those aged under 25 don't have as many responsibilities. I have rent and bills to pay, food to buy, and it isn't fair that because I'm not old enough, I'm not entitled to the same wage as a 26 y/o when I am doing the exact same work!

Let's say that a 20y/o student was receiving the minimum student loan, which didn't cover rent costs. With a minimum wage job, the money still may not cover living costs, forcing them to either use a student overdraft or a payday loan. All of these things are a sticking plaster, a means to get by from day-to-day, and have to be paid back eventually. Now with the student loans that already need to be paid back, and the loans that allow day-to-day operation, the debt only gets worse. It has become acceptable to offer someone a temporary fix rather than pay someone a fair wage, it's another way to avoid responsibility.

According to "livingwage.org.uk", the UK average for what the real living wage should be is £8.75, and yet the national living wage is £7.50, so already there is a disparity in what is needed and what is provided. Yet I, because of my age, something that is completely outwith my control, earn £5.60, which means I earn £1.90 less per hour than my colleagues at the same level as me who happen to be over 25.

In my work, everyone is trained in the same way. Everyone does the same work. Everyone works the shifts they are given. The minimum wage was calculated by the UK government based on what they thought employers could afford, however by doing this it is saying that the profit the owners get is more important than the wage employees deserve. According to "livingwage.org.uk", businesses get increased motivation and retention rates when they pay a decent wage, and that is improves relationships between managers and their staff. Paying staff an equal and fair wage has so many benefits.

It is ridiculous that there is still a wage gap. There has been massive steps forward in terms of equality in recent years, for example, recently woman have celebrated 100 years of the vote, but there is a massive way to go. Having the minimum wage law allows employers to continue on a hierarchy, with the gap between employers and employees becoming wider, with people on low incomes still struggling to get by, and the profit staying at the top. They say one step at a time, but surely my wage should be determined based on how hard I work, rather than how old I am!

Until next time,

Alyssa x

Diabetes and Social Media Burnout

If you follow my blog regularly, you'll notice that I have been a bit absent and haven't posted in a while. There are many reason for this: Being extremely busy with University and placement, having personal things going on at home, but mostly because I needed a break. I try to be as honest as I can about my health, but I found that by talking about being Type 1 Diabetic all the time, it became how I defined myself. I was the diabetic girl, I blogged about my health and the people around knew all the ins and outs of it, and what I wanted most was a break.

In the times of social media, everything is so public, and I have craved a bit of privacy, to be in my own bubble for a while and take care of myself. I have found myself being obsessed with getting other peoples approval on Facebook, Twitter etc, and I am embarrassed to say that I do care about how many likes and shares my posts get. I needed to take a step back, and start seeking my own approval for things, rather than craving approval from others, and not be measured by the amount of likes I get.

Social media, in terms of support, can be brilliant. There is a brilliant community of people out there, who understand what it is like to live with Type 1 Diabetes, who can offer an ear and a hand when needed, but with this comes judgement. I found that being on social media, I can hear so much support, but if I hear even one piece of judgement or disapproval about the way I personally do things, it sticks with me. I know that there are so many wonderfully supportive people out there, but I can't help take the negative comments forward and let the positive comments fade into the background.

So yes I am busy, and I do think social media is brilliant, however I am trying to use it with a lot more caution than I did before. I want to continue spreading awareness, educating people what it is like to live with Type 1 Diabetes on the daily, the challenges it brings and how I control it in my life, but I am now going to be more apprehensive of what I put online. I believe this will be better for my mental wellbeing in the long run, to not obsess over whether other people are judging me.

I will still be as honest as possible. The reason I started blogging was to help the people around me understand that Type 1 Diabetes isn't just taking an insulin and being fine, and I still want to do that. I have just realised that I don't need to put everything of myself online in order to do that.

I hope that you all will continue to follow my blog.

Until next time,

Alyssa x