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/