Hey all it’s Purple Day on March 26 and I would love you to wear purple.
Why??? Hmmm loaded question that one.
You know that feeling you get when someone close to you is really sick and you are worried about them. Well families and people with uncontrolled epilepsy in their lives have that feeling everyday. In our case we have lived with that feeling 24/7 for 7 years.
You know the times where you have adrenalin rush through your body from a scare or you have something really important coming up and you are stressing out about it and it’s always on your mind. Well that’s what epilepsy carers live with on a regular sometimes daily basis.
You know that feeling when you have had something traumatic happen and you keep on reliving it over and over again. Well epilepsy carers live with trauma all the time
You know that feeling when you have drunk to much and you feel seedy and exhausted the next day or you have had a massive run and every muscle in your body aches. Well people who have epilepsy get that feeling too, every time they have a big seizure and the little seizures still exhaust but it’s a more accumulative effect over time.
You know that feeling when you have injured yourself and have been put on really strong painkillers and you just don’t quiet feel yourself or all you want to do is sleep. Well people with Epilepsy feel like that with some of their medications. If they are lucky they find the right one that gives them minimal side effects and for others they live with the side effects to make sure the seizures are controlled.
You know that feeling when you know if you do something that it’s going to hurt someone else but you know you have to do it. Well imagine a parent having to weigh up side effects of meds causing aggression as an example or stopping the med and it increases their seizures and you hold the decision on who gets hurt yourself or your child.
You know those nights where your child is unwell with a fever and you stay by their side because you don’t want to leave them. Well many epilepsy carers live that every night 365 days a year, every year. Because they can’t live with the thought that their child may pass away if they miss a seizure. Please just imagine for a moment how that feels to never be able to relax fully.
You know how sometimes you have to make a decision on if someone you care about needs to go to a doctor and you know that if you decide to go to the doctor that they will tell you it’s a virus, go home and rest or will give you a script to fix it. Well imagine being the doctor and having to make many of those decisions for the person you care for. Yes you may have a neurologist to discuss with but they aren’t there at 12pm at night when you are trying to decide to give emergency meds or not. They aren’t there making decisions about your child’s health.
You know that feeling when you debrief with a loved one about your day at work or volunteering or study. Well epilepsy carers do that too but we also debrief about our child’s health on a regular basis.
You know that feeling when you have an amazing night out without a care in the world and life is good. Yeah well that’s our dream lol and we do try to have those nights but however great the night may have been you know that reality bites and it’s back to the grind so to speak.
I want you all to know that Epilepsy comes in many shapes and forms and effects each individual and family differently . But we also experience many of the same things we all have trauma, stress, anxiety, fear, sadness and deep in our bones heartache.
I want you to know that the person with epilepsy in our lives are the most amazing individuals who haven’t been given this because they or we can handle it but because shit happens and life’s is what it is. But they are strong, resilient, empathetic and caring individuals.
Why? Because people living with epilepsy in their lives see Purple Day as a day to celebrate and promote Epilepsy and all it’s many shapes and sizes all over the world. And we want your support.
#epilepsyawareness #ragdollmummas #epilepsyletstalkaboutit
Ragdoll Mumma Zoe