International Day of People with Disability - personal experience

Today is International Day of People with Disability. As such today (after procrastinating for a few months), I’m sharing a recent journey. Before I tell you how this came about, I want to share some of my experiences from this.

Firstly, I will say that prior to the initial ‘event’ I thought I had an understanding of ‘this’, but it barely touched the surface.

This event started in June and has been an ongoing journey. While somethings have settled down, the ongoing emotional, mental and physical effects have the biggest impact.??From a mental and emotional perspective.

• Each time it takes me about 6 weeks to get back to my ‘normal’ mental/cognitive capacity.
• I’m more hypersensitive to visual and sound stimuli, and if I don’t manage it, the overwhelm spreads to include the other senses.?
• There is the lingering fear and worry for myself and the impacts on my family and those around me.
• The disheartening knowledge, that after so much work getting over many hurdles, this is another big one. And at times, feeling like I’m peddling backwards.
• Lowered self-confidence and body image, as well as stress and anxiety.

From a physical perspective:

• I can no longer get up in the mornings and start work straight away. My brain needs time to adjust. If I?don’t, I often feel like there is shaking inside my head.
• I need more sleep.
• Weight gain, water retention, hands shaking and thin skin.??The weight gain and water retention have been the biggest issue as I previously worked to overcome these.??All of which has Ian impact on my confidence and emotions.

This initial event was a seizure.

I was working from home, and it was a normal weekday from all accounts. It was still early in the morning, when I had the seizure, my first seizure. Thankfully, I still live with family and was sitting at the time, so there were no physical injuries and emergency services were contacted. I remember nothing of this or for about 40 minutes after. I had a tonic-clonic (grand mal) seizure, and it was some time before I could clearly communicate or remember what I was doing beforehand.?

I was in hospital for 3 days and was hopeful that it was my first and last seizure, as no cause was identified and less than 1 in 10 people who have a seizure get epilepsy. Of course,?I was yet and have only recently started to deal with the emotions. This includes the guilt I felt and feel for my family in having to witness and deal the seizure.?

I was initially placed on one anti-epileptic medication with changes to two of my other medications. I was home for 3 days before returning to emergency as I was out of it and not feeling right. After more tests and a number of days in hospital, plus a possible focal seizure (where I gave the hospital staff and my family a fright - I wanted to go home, so I did, by myself on a bus, while barely with it), I was released with a new anti-epileptic medication.

Come mid-August, I felt I was on the other side of this “experience”, but no. I had another seizure. This time though, I was standing and dropped to the floor. Thankfully, I was again at home and the only injury was severe bruising to the under and upper sides of the toes on my right foot. I still didn’t feel “conscious” for about 40 minutes, but apparently, I had been communicating and trying to help.

Since this started in June, I’ve likely had at two or mor focal (also known as partial seizures), whereby I’m still ‘aware’ but not all faculties are functioning.

While the epilepsy medication helps and has reduced the seizures, I still fear having a seizure, and what if it occurs when I’m not home? How will this impact those who witness it? It therefore took me a couple of months to increase my outings.?

All of this means I need to be aware of my energy, how I’m feeling and when to slow down. I’m not volunteering at the moment and I’m not committing to much, as I don’t want to pull out at the last minute and let others down. I’m also aware that I’m not staying connected with my friends and other connections. Everything is very fluid and if I do lock events in, I make sure to build down time around it.

This is a lot for me to share, and likely, for you to take in, but I feel it’s important for others to understand the impacts. As I said, I thought I had an understanding. A seizure is a seizure (just one type). Flickering can trigger a person with epilepsy (not a myth, but not the full picture either). You have medication to stop the seizures. You can’t drive once you have epilepsy etc.

As epilepsy is, for the most part, invisible, many people aren’t aware of the physical, emotional and mental impacts. These impacts also vary from individual to individual and depend on the types of seizures, medications and severity.?

If you take nothing else from this newsletter article, please check out, and share the Epilepsy Action Australia first aid poster. Share it with your family, friends and colleagues. And if you want to find out more, check out?Epilepsy Action Australia’s?website.

#InternationalDayOfPeopleWithDisability #Epilepsy #InvisibleDisabilities #Disability #IDPwD #IDPwD2024