Angela Winkler a fellow mum and good mate who has two children with uncontrolled Epilepsy. Thanks for sharing your thoughts. It resonated with many when you first posted it. I am sure it will resonate with people who follow our blog too.
While waiting at the doctors today I was told by an acquaintance ‘at least it’s just seizures you’re dealing with’. Apparently migraines are far more debilitating than seizures.
Those words have rung in my head all afternoon. They’ve been going round and round. I wish it was just seizures. Oh how I wish that!
In the interest of awareness raising (and in no way sympathy or pity), I will share why epilepsy is NOT just seizures for our family and many others dealing with refractory epilepsy.
Epilepsy is many things. It’s heart ache and fear. It’s life threatening seizures and hours lost. It’s many medications and horrific side effects. It’s sleepless nights and hours spent by bedsides. It’s advocating and breaking down barriers. It’s anxiety and grief. It’s memories lost and regression. It’s pure exhaustion and mental fatigue. Its relying on others. Its guilt and lost friends. It’s time lost from school and work. It’s loss.
It’s so much more than just seizures!
I asked Eloise what epilepsy was and this is her list of words – Annoying, stupid, horrible, scary, unforgivable, horrifying, anxious, hospital, tests, missing school, missing friends, headaches, horrible medicine, ambulance, seizures, feeling sick in the stomach, worry, dreadful, feeling alone, missing out.
To Eloise it’s so much more than just seizures.
Over the past two years we have been dealing with two children having many seizures. We’ve had over 40 ambulance trips and more hospital stays, appointments and tests than we care to count. As parents we’ve grieved the diagnosis, we’ve shed tears, prayed for the kids to wake up, experienced extreme anxiety and trauma, been too scared to leave or answer the phone, spent nights awake watching our children seize, played doctor deciding what new med to try and when to give rescue meds, missed more work than we should to be productive employees and we’ve spent hours advocating and fighting for better services for children with epilepsy. Through it all though we face each new day with hope that it will be seizure free so we can watch our children shine.
It’s been a really tough ride for us. It has however been a tougher one for Eloise and Spencer.
They’ve faced hundreds of seizures over their short lives. They’re filled with medicines with horrendous side effects that numb and agitate their brain. They’ve missed so much school and even when at school, miss moments and hours. They have been poked, prodded, examined and had scans and anaesthetics. They have missed out on events and special days. They have experienced side effects of meds that have sent them crazy for hours on end, given them headaches, rashes, weight loss, memory loss, speech loss, blurred vision, rotting teeth, nausea and many others. They have and continue to experience fear and anxiety knowing seizures are coming and they can’t stop them. They have at times been aware of their seizures and what they are doing to their bodies without the ability to make it stop. They’ve watched each other seize and been active carers helping to manage each other’s seizures.
Through it all, they’ve shown a resilience and ability to cope far beyond their years. They face each day with hope for a seizure free day and enjoy every moment. They are amazing children.
For them, epilepsy is so much more than just seizures.
As we go into this week with Eloise being admitted to hospital for video EEG monitoring it’s filled with apprehension and fear. We actually want her to have a seizure this week so we get data. We want answers, yet we fear answers. I’m anxious that i won’t be around for Spence if he has seizures but need to be there for Eloise. As have many children who have been through VEEG, Eloise will show courage and resilience. She always does.
Please never say to someone suffering epilepsy ‘it’s just seizures’. Epilepsy is not and it never will be. It is SO MUCH MORE!