Thursday, 29 August 2019

The Burden of Seizures

Hi everyone! It has been almost 3 months since I have blogged!

This summer was my last summer as a student, and possibly the only time that I will get an almost 4 month break again, so I tried to fill it with volunteering. Some of the things I've been up to:

  • Helping to organise the World Community Development Conference 2019
  • Volunteering on a youth work 3 week summer programme
  • Spending 3 weeks volunteering in the Corrymeela Community in Northern Ireland
  • Organising the Young, Fun and Type 1 Conference

And through it all, I had Type 1 Diabetes and it's daily complications on my mind. Recently, I’ve been thinking about how complicated my life can be, and in particular, seizures.

I have been diagnosed with Type 1 Diabetes for over 6 years, and I have been diagnosed with Epilepsy for around 3 years. Individually, both conditions are hard to live with, however combined, Type 1 Diabetes and Epilepsy interact with each other and make them both harder to live with. I occasionally have seizures when I’m exhausted or extremely stressed, but my main trigger is low blood sugar (also known as a hypo). If you live with Type 1 Diabetes, you know that sometimes it can be extremely difficult  to prevent low blood sugar, which makes my life difficult.

Normally what happens when I have a seizure is that I feel a hypo approaching, I test and treat the hypo, but it always seems to be too late, the sugar doesn’t work in my body fast enough to bring my blood sugar up before I have a seizure. This does not stop me from attempting to eat my body weight in sugar because of fear.

I live in a constant state of fear.

If I have a seizure, my day/week is completely ruined. If I have a seizure in public, I burden the people around me. They might have to call an ambulance or stay with me to make sure I’m alright. My sister told me that seeing me having a seizure, being scared about what was going on whilst having to try and make sure I was alright, was one of the scariest moments in her life. She treats me as if I might brake now, getting scared when she sees me even test my blood sugar or check my insulin pump. I don’t want to put anyone through that experience.

How my seizures work: I have seizures called Tonic Clonic (or Grand Mal) seizures, which means my body becomes rigid and there is uncontrolled shaking for around 1-3 minutes. In the 30 minutes that follow this, I am in and out of consciousness, and I am not normally aware of my surroundings. One characteristic that I ALWAYS have after a seizure is biting my tongue. In the hours that follow, I feel symptoms like headaches, confusion and extreme fatigue. All of my muscles ache, and it feels as if I’ve done extreme exercise. My limbs are heavy, as if they are made of lead. I have extreme brain fog, and it’s hard to form a coherent thought to have a conversation, let alone do anything that requires more brain power. These symptoms only seem to last about 24 hours, apart from the swelling in my tongue, which lasts about 3 days. I normally have a lisp and I find it extremely difficult to eat.

Thankfully, I’ve only banged my head once when having a seizure, when I hit my forehead on the pavement and had to have it glued shut, however everything was fine. It is scary to hear stories of people who have seizures in the shower or when they are out walking, they hit their head, and die. This is petrifying, one of my biggest fears.

To control my epilepsy, I take a drug called Keppra, which hasn’t fully stopped my seizures due to the unpredictability of Type 1 Diabetes, but I think it has prevented some. For my peace of mind, and to try and prevent my blood sugar going low in the first place, I wear a CGM (Continuous Glucose Monitor). This takes a reading of my interstitial Fluid in my body, and sends a Bluetooth signal to my insulin pump. My insulin pump then alarms when my blood sugar is dropping/approaching low or actually low, and it automatically suspends the insulin flow going into my body. This means that if I am by myself and something happens, at least I’m not getting anymore insulin to make my blood sugar lower. This is an amazing peace of tech, which  helps immensely with my peace of mind, and helps me feel I can be more independent.

I am aware that others also go through this experience, that I am not alone. I don’t have seizures often, but when I have them they are quite traumatic, which is why I wanted to share, because if I feel this way, others may also feel this way. Remember to always be empathetic towards others, because you never know what is going on in their lives.

I would also encourage people to ask questions when you don’t understand/are curious about someone’s health. I am very transparent about my health, and the majority of people just want those around them to understand what they are going through.

Until next time,

Alyssa x