Monday, 6 November 2017

Placement - Type 1 Diabetes and Epilepsy

In the summer I got diagnosed officially with Epilepsy. I had been having seizures for a while but just put that down to having Type 1 Diabetes, but when I had a seizure not related to my blood sugar, I realised that it was something more. At first it was hard to accept that I had another thing to consider and factor into things, something I had to declare when I started new jobs. I found it daunting because when I just had Type 1 Diabetes, it was easy for me to explain that I would control things, but the nature of epilepsy is that it is unpredictable. I got by the Epilepsy team that there are things that lower my seizure threshold, including alcohol, stress and being tired, and being stressed and tired are normal in my life at the moment.


I study a course at University called Community Learning and Development (CLD), and as part of that I go on work placement for a whole semester. Obviously, when I started that I had to state that I lived with both Type 1 Diabetes and Epilepsy, and my worry was that I would get coddled and treated differently due to this. I was also worried that being diabetic would affect some of the work I did, for example, if my blood sugar was high I wouldn't be able to concentrate the same way and it would affect my work, or I would have to take some days off due to a seizure. Most of all, I just don't want it to affect me being successful at university.



Selfie with Nicola Sturgeon I got while on placement!
Right from the start, everyone was lovely. No one even took it as a factor when asking me to complete work. They treated me as an absolute equal, which I was really happy about. I told everyone at the start that I would let them know if I wasn't well or if I needed anything, and they have been really respectful in terms of hospital appointments. It is always on the back of my mind though.

I have said it before, that Type 1 Diabetes is 24/7, it doesn't just go away after you give insulin. It factors into everything you do, and as placement is very unpredictable in terms of routine it is often a bit more difficult to control my blood sugar. I don't get everything perfect, and this means that the work I do at placement drains me even more. Even if my blood sugar is slightly higher than it should be, I get tired and have to try harder to concentrate. This means that when I finish my working day, I am often so exhausted and find it hard to do anything else in the evening. I am doing placement for 35 hours a week, and I also have to do a portfolio of my practice, and I find it hard to keep up with the portfolio because I am so tired. Not having the time or energy to do this work stressed me out, and the fact that I was stressed made me even more stressed due to me having epilepsy.

I also oversubscribe myself a lot. I play netball, volunteer, and after placement and my Uni work, I am absolutely drained, and throughout this it is always playing on my mind that being tired and stressed can lower my seizure threshold, but I desperately don't want to give up anything I do, and I am absolutely determined not to let Type 1 Diabetes or Epilepsy hold me back doing anything. That is just me being stubborn, and that is how I slowly and accidently burnt myself out.

Me dressing up for placement Halloween event!
I am having such a good experience on placement. I enjoy all the volunteering I do. I enjoy playing netball. I just have to admit to myself that I can't do everything, that I have to take a break and make time for my health. I have in no way figured out how to do this, but I have cut back the amount of volunteering I do, and I haven't stressed about doing exercise, but I still try to do as much as I can. I have also tried to make sure that if I do have alcohol (I am a Uni student so alcohol is almost inevitable!) that I have some downtime afterwards in case something does happen.
I did have a point where I was so burnt out that I wanted to quit. I didn't talk to anyone, I didn't go to netball and I ignored the ever-growing pile of work that I had. I did the bare minimum, then came home and watched TV. I then realized that I just needed to take some time for myself every now and then, understand that I do have limitations (as much as I hate to admit it!) and for the time being, I need to scale back.

And although I haven't quite figured out how to do this yet, I am working on it. I know that placement is only until the end of the semester, but after that I will have other things happening. I just need to take time every week to figure out what self-care I need to do, whether it be talking to friends, family or just having a day doing absolutely nothing.

Until next time,

Alyssa

Sunday, 5 November 2017

The Insulin Gang

When I was first diagnosed with Type 1 Diabetes, a little over 4 years ago, I did feel quite alone. I looked at Facebook for support, and accidentally stumbled across a page called "The Insulin Gang". On this page was a multitude of like-minded people who all had some connections to Diabetes, and there were so many different experiences that were posted on this page, it really helped me understand and come to terms with my Type 1 Diabetes.

I spoke to Donna Hall, the woman behind "The Insulin Gang", to find out where the group stemmed from and what her inspirations were for creating the group.

Left - CerysAnne (16), Middle - Donna, Right - Alena (13)
Q - Why did you decide to start "The Insulin Gang"?

A - It was when Cerys-Anne, my then 9-Year-old daughter, was diagnosed with Type 1 Diabetes after a prolonged chest infection, that I wanted to get her and others connected, as we didn't know of any children with Type 1. I started "The Insulin Gang" when promoting a child's support group that we built online of the same name. Whilst the forum designed to bring children with Type 1 together only ran for a while, the Facebook page quickly acquired members. I later changed the Facebook page to a public group, then a closed group at the request of many members.


Q - What have you gotten most out of creating and running this group?

A - Since running the support group, I've made connections with so many different people from all walks of life and that's meant a huge source of continual support given and received by members of the diabetic community. I've witnessed friendships developing and that feels lovely and also I've made personal friendships, even meeting up with members of the group and forming long lasting friendships which of course impact positively on our children.
The Insulin Gang provides a platform for information, shared ideas, acknowledgement of the latest research and development in Diabetes but also offers a place where people can just be honest and be held, listened to and understood. Everyone just "gets it"


Q - Do you feel that starting the Insulin Gang helped you and your daughter care for your Type 1?

A - Having the Insulin Gang has personally helped me to feel like life with Type 1 is more normalised and achievable. We didn't know any other children with Type 1 Diabetes and that felt daunting and isolating. The level of support that goes full circle online is crucial I think, especially when support offline doesn't always come in abundance. It's good to read others experiences and management suggestions. It serves as educational and inspiring.

Q - Why do you feel the Insulin Gang has been a success?

A - I promote conversation on there by asking questions to build more connections between people and I hope people all feel totally at ease in sharing their concerns, questions and burdens but equally their celebrations of successes with life living with Diabetes. Diabetes can feel relentless, all consuming and imposing at times. The diabetic community is a force to be reckoned with. SO many wonderful people waiting with advice, support, action and friendship. It's quite amazing. So many people raising money and awareness. It's a great feeling to witness and be part of. The Insulin Gang brings a sense of camaraderie that is essential to many and myself I believe.



"The Insulin Gang" isn't the only project that Donna works on. She also runs a parallel group called "Adventures of the Insulin Gang Travelling Bears", and this group sends out special bears to children with Type 1 Diabetes around the world, where they fill in a diary about their time spent in each place, and pass the bear onto the next person. She does this will studying and being a parent.

"The Insulin Gang" now has 4.7k members, and whether they are parents of someone with diabetes, family members, or they have diabetes themselves, I'm sure it will continue to provide support to many in years to come!

If you are interested in joining "The Insulin Gang", here is the link to the facebook group > https://www.facebook.com/groups/495961283869403/


Thursday, 19 October 2017

Peer Support with Type 1 Diabetes

Ever since I was diagnosed, talking to someone who understood what was happening and who was going similar things helped. I met other Type 1 Diabetics at my school, but it wasn't until I attended a Diabetes UK care event (now called Type 1 Events) did I notice the real benefit. Everyday at this camp, I was surrounded by people who also checked their blood sugar, who also had hypos, who also struggled Day to day with type 1 diabetes, and it almost normalised these things. For once, I felt normal, not ill or different. When we went swimming, I wasn't the only one with a cannula in or with scars from countless needless. It felt amazing.



After this event, I still had a network of people who understood. We were connected through Something that could be considered a bad thing, but it had connected us . If I had a question or had a bad day, I had a bank of people I could ask, people that I trusted and who I knew.



I don't believe the first couple of years with Type 1 diabetes would have been as bearable if I hadn't received this peer support. Although most of the time we were connected through social media, I didn't feel as alone or isolated. I didn't feel like I was in it alone.



I have noticed that there is a massive gap in peer support in my area, and it is a gap that is present in a few areas throughout the UK. It is important that peer support is available to Type 1 diabetics, as it may stop isolation and feelings of difference. There aren't a lot of mental health support available and this is needed as Type 1 diabetics live with a chronic disability, which can often be debilitating. Although peer support isn't a substitute for mental health support, it can help quite a bit!

I decided to set up a group at university (with help!) for students in the surrounding area. University is a tough time for people living with type 1 diabetes, and I know the benefits that having a support network brings. I'm hoping that even if only one person shows up to the group, that one person benefits. The whole premise is that it is informal, not so much a support group where everyone talks about diabetes, but where we can all have fun, become friends, who all happen to live with Type 1 Diabetes.


A picture from our first meeting of the group!

I want everyone to have the support that I have. I have people to turn to if I have a bad day, and I want everyone to have that. People shouldn't have to suffer by themselves when there are so many people that understand.
I do now have contacts that act as peer support, both local and all around the UK (not to forget the international people!). They help me so much if I am having a hard day. Some aren't as lucky as myself, and have to deal with everything alone, and that needs to change. I appreciate that it takes a lot of organising, however it is essential that these things are organised. I want everyone ot have a support network like I have, because there are so many people out there that understand, they shouldn't have to go through it alone!

If there is a group near you, attend it. It is nerve-racking making that first move and attending when you don't know anyone, however for the people you meet it is worth it!


Thursday, 21 September 2017

News of Freestyle Libre on NHS

Recently, on the 13th September 2017, the Type 1 Diabetic community had a massive win. The Freestyle Libre, which is a sensor on the arm that is scanned to get an overview of the users blood sugar, is now being funded by the NHS (National Health Service, our healthcare provider in the UK) as of 1st November! This is massive news, because up until now the freestyle libre had to be funded privately, meaning only those who had the means of paying £100 per month at least could access this technology. Now that it is being funded, this amazing piece of technology can be more inclusive, giving everyone a fair chance at accessing good diabetes care.

Me wearing my CGM proudly on my arm!
The freestyle libre, a flash glucose monitoring system, is the size of a 2p coin, normally attached to the back of the arm, and the purpose of it is to reduce the amount of blood tests that a Type 1 Diabetic has to do throughout the day. It differs from a CGM (continuous monitoring system) as a CGM links to another device all the time, and alarms if your blood sugar isn't on track. As amazing as the Freestyle Libre is, some people need the comfort that they will get an alarm if their blood sugar is dropping, for example, because they don't recognise when they are low, or are prone to severe hypos.

I myself use a Medtronic CGM, normally on my arm, and that links to my insulin pump. My insulin pump then alarms me if I am approaching being low, to prevent me from actually having low blood sugar. It also suspends my supply of insulin if it then senses that I'm actually having a low blood sugar. If you follow my blog, you'll know that I often have seizures that are related to low blood sugar, and so wearing this CGM is such a comfort to me, as I don't have to worry as much about having low blood sugar. If it does happen, I have a back up of knowing that I won't be receiving insulin via my insulin pump, and that will eventually bring my blood sugar back up. As I am wearing this, I feel so much more independant. I now feel like I can do simple things by myself, things like taking the bus, or doing exercise, without being afraid that something will happen. This is a comfort that the freestyle libre wouldn't give me.
Proudly modeling my CGM on my Arm
In order for the NHS to fund my CGM, I had to put a business case in for it, proving that I really needed it. I had to do this as it is such an expensive peice of technology to fund, and not many people use it because of this. I have used it for over 3 years, and at this point I can't imagine my life without it.

This news is amazing, and it could help so many people, however I am worried that as the Freestyle Libre is cheaper for the NHS than CGM's are, those in need of CGM's because they don't recognize when their blood sugar is low or who have frequent severe hypos like myself will miss out.

We don't know yet what the criteria for gaining access to the Freestyle Libre, so for now my concerns are speculation. I honestly hope that this news is all positive, the people who need this technology will have access to it whilst the people who need access to the CGM will also have access to it. Only time will tell.

Until Next Time,

Alyssa x

Thursday, 31 August 2017

My Type 1 Diagnosis Story

I was 13, in Home Economics class, and I was being cheeky and angry towards my teacher, causing me to get sent out of class (which was unlike me). During the class, I asked to go to the toilet. I asked to go fill up my water bottle. I also asked to go to the medical room because I felt faint when I stood up. The teacher put all of these things down as typical teenager behaviour, me trying to skive class because I was being punished. She wasn't to know that I was being angry, constantly thirsty and needing the toilet, and feeling really tired and faint, because I had diagnosed Type 1 Diabetes.

I told my mum I felt unwell, and she told me that I should go home. Although I did feel slightly under the weather, I felt like I was faking it, and like I shouldn't be going home. While I was waiting in the medical room for my mum to collect me from school, there was a poster in the school by Diabetes UK. It was the 4 Ts campaign (Toilet, Thirsty, Tired, Thinner as the symptoms of Type 1 Diabetes) and at the back of my mind it registered that I had been experiencing these, but I never thought anything of it.

The 4 Ts campaign poster
It was a Friday Morning, I was at home after my mum dropped me off, and she called me to tell me she made a doctors appointment for me. I honestly thought this was a waste of time, because after sitting for a couple of hours, I felt fine. I told my mum this, and she told me that I was going to the doctors, because drinking about 4 litres of water in one morning and losing 2 stone in 3 months wasn't normal, and I agreed to go.

As it was last minute, we got an emergency appointment with the nurse at our GP. Atfer explaining to the nurse everything, she told me that she would take blood from me to test for things on Monday morning, but she didn't think it was anything. My mum prompted her that I had common symptoms of Type 1 Diabetes, and that a blood sugar test takes 10 seconds tops. The nurse looked doubtful that it could be Type 1 Diabetes, but agreed to give me a quick blood sugar test anyway. While she was setting up the test she told us that I would have to come back in on Monday to get blood taken and further tests done, because this test would be normal. My blood sugar was 28 moll/l (usual range is 4-7 moll/l), and the nurse told my mum to take me straight to A&E, because I definitely had Type 1 Diabetes. I could have ended up really ill over the weekend if my mum hadn't pushed the nurse to test me and I had just come in on Monday.

My dad and I, 6 days before I was diagnosed (notice how baggy the dress is)
In the hospital, I was told I wasn't in DKA (diabetic ketoacidosis) yet, so all I needed to do was learn how to inject myself with insulin, test my blood sugar and generally learn everything about Type 1 Diabetes. I remember a nurse asking me how I felt after my first insulin injection, and I told her I felt like I could go for a run as I was feeling so much better!

About 2 months before I was diagnosed, I was on a long bus journey with my brother. I only had fresh orange with me, and at every service station I had to run in, go to the toilet and get a litre of water. Afterwards, I told my mum about it, and she joked, "I wonder if you have diabetes". It was a complete joke, and she never thought it was true, but its hard to think that even though people know the signs, we don't believe the symptoms.

I remember me and my sister, Iona, going for a run at the park near my house, about a month before I was diagnosed. I had went to the toilet before I left, but I didn't bring any water with me. We had gotten to the park at a jog, and that took us 5 minutes, and I told Iona that I desperately needed to the toilet. She got mad at me because I had just gone, but in the end I had to go in the trees in the middle of the park, with Iona guarding me to make sure no one could see. We both went back after that, because I was too tired and thirsty to continue, and I just put it down to me being unfit. It frustrated me and Iona because all in all, we were out for about 15 minutes, and 5 of them was me trying to find somewhere to go to the toilet.

Iona and I shortly before I was diagnosed (I'm 3 years older than her)
So much happened that could have led me to think Type 1 Diabetes. I even saw a campaign with all the symptoms on it that I had, yet it never crossed my mind as a possibility, even when my mum was talking about it, until the nurse diagnosed me. I thought I was just a teenager feeling tired and going through puberty.

It is scary to think about what could have happened if my mum hadn't known the signs of Type 1 Diabetes. Doing a blood sugar test is so simple, and takes 10 seconds to do, yet the nurse didn't even consider doing one without prompting. My diagnosis isn't dramatic, I wasn't near death yet and I was only in the hospital for 2 days to learn the ropes, but it was the start of a lifelong journey. I didn't realise at the time how much of an impact Type 1 Diabetes would have in my life, but it is funny looking back to before I was diagnosed, and noticing the subtle signs.

It took one finger prick and one afternoon, to change the rest of my life, to discover that I will always be dependent on insulin to survive.

Until next time,

Alyssa x

Monday, 21 August 2017

Young Leaders Project - Weekend Residential

A group photo of the Young Leaders

Diabetes Scotland recently got funding to start a new project with young adults age 16-25 who are living with Type 1 Diabetes, with the aim of connecting young people and establishing a peer support network, building on their skill sets and give young people a chance to have a say and build on issues important to them, letting them be young leaders of diabetes in Scotland.

The first part of this project was a weekend residential with all the young people, and the intention of this residential was to build connections within the team, and to plan the first stages of the project. As everyone has different experiences with type 1 diabetes, everyone has different things they are knowledgeable and passionate about. That's why the focus of the project is to have every individual plan their own projects, which are supported by Diabetes Scotland and the other young leaders. This allows projects to be ran by people who are truly passionate about making a change.

Team challenges was the first part of the weekend. The first exercise we needed to do was get a tube over everybody, which required teamwork and communication in order to complete the task as quickly as possible.
The next part was trying to cross a "lava river" with only 6 blocks, and this required problem solving and again, team work.
Next we had to all safely get through a spider web, which meant we all had to rely on each other to be carried through!
Next we were all blindfolded and tasked with guiding each other along a rope and making sure everyone got through safely.
Finally we were tasked with carrying a mug of water through an assault course under time constraints, which definitely taught us that we need to communicate and help each other when one of us found it difficult.

All of these exercises taught us that we all have different strengths, and we can use those strengths everyone else. They were really good exercises in demonstrating how important it is to use the resources available to us, and that it is good to get a different perspective of every issue.

Over the weekend, we learned about TED talks, we brainstormed on issues that affect people living with Type 1 Diabetes. We talked about the different ways we could make an impact, including how to organise and run campaigns (a session I helped facilitate)
Me helping to facilitate a campaigning session
We came away with action plans on what we want to do, and every single person left the weekend excited about the year and the projects we want to do. We are receiving so much support from Diabetes Scotland, it's hard to believe that the project can be anything but successful.

Brainstorming / discussing ideas

When this project was announced, I was skeptical as with university and my other commitments, I didn't believe I would have enough time to make the most of this opportunity. I spoke to Katie, who is the leader of this project, and she said that if it is too much of a time commitment, I can take a step back for a while, and be as involved as I wanted.

You don't have to have any experience to be a part of this project, just be aged 16-25 and living with Type 1 Diabetes. The project is still recruiting, so if you want to get involved, follow the link below:

https://www.diabetes.org.uk/In_Your_Area/Scotland/16-25/


Sunday, 6 August 2017

Low Blood Sugar Seizures and Epilepsy


Although I have Type 1 Diabetes, I often feel like I have more anxiety than most about having low blood sugar. This is because when my blood sugar goes low, I often have seizures. My first major seizure happened when I went low (called a hypo) on a flume, and had to get fished out of the water at the botto. This has meant that the NHS has funded a CGM (continuous glucose monitor, which gives me a reading of my blood sugar every 5 minutes and sends the reading to my pump) for me to prevent my blood sugar going low, but this hasn't stopped them completely.

When I say I have seizures, I mean full Tonic Clonic seizures. I become unconscious, shake and am in and out of consciousness for a good half hour before I wake up with a very sore tongue from biting it, and feel like I am very hungover for the next day. I hate letting my diabetes hold me back, so I became so anxious of my blood sugar dropping, that I often used to let my blood sugar sit higher to prevent myself going low, which meant I was unwell a lot.

In April of this year, I woke up one morning, tested my blood sugar and it was 9 mmol/l. The next thing I know, I had a seizure. This was strange for me, because I had never had a seizure without my blood sugar being low, so this triggered a thought. Maybe low blood sugar was a trigger for seizures, and not the cause. I went to my GP with this, and after examining me to make sure there wasn't another cause, she agreed this was a possibility, and she referred me to a neurologist.

This is such a personal issue for me, as it causes me so much anxiety about day to day tasks. I have had seizures on the bus (3 times) and walking home, so it's hard for me to think about the possibility of me having seizures that are near impossible to prevent. I still sometimes get upset about the fact that I can't get my driver's licence because of these seizures, and the fact that if I have a seizure, I have to put the people around me at an inconvenience (which did happen at my flat at university).

I had my appointment at the neurologist, I explained everything that has happened with my low blood sugar seizures, and the one I had when my blood sugar wasn't low. She called my mum, who had seen me have the seizures, and could explain  what they looked like, and how I reacted. The neurologist then went on to tell me that I had epilepsy and that,  as I had predicted, low blood sugar was just a trigger to the seizures, rather than the cause. She put me on tablets to hopefully control these seizures, and said I had to go for a EEG and an MRI of my brain to find out more about my epilepsy.

I was really upset about having another thing to deal with, another label put on my head. I already have Type 1 Diabetes, now I have to declare on forms that I also have epilepsy. After the neurologist told me, I just walked around the city where I live, trying to process things, and get my head clear, before I could tell anyone. 

My tweets about the situation shortly after it happened
I have been on the tablets prescribed to me for over a month now, with no visible side effects, and I haven't had a seizure since April. I still don't know whether this is because I haven't had any bad hypos or because of my new tablets, but I am trying to control my Type 1 Diabetes better, as I don't like feeling unwell all the time. I am hopeful that in the future I won't have any anxiety about living my life, or going on the bus myself, and that maybe one day I can get my drivers licence.

Until next time,

Alyssa x