The practicalities of living with Epilepsy

So we are pretty new to the world of epilepsy, and what this is really going to mean for our family.  Firstly we know that Luke’s epilepsy is not photosensitive, which as a 6 year old boy who loves his Playstation this is  a huge positive.  Luke has never had a Tonic Clonic seizure, the longest observed seizure he has had was around one minute and so we have never had that heart wrenching fear of is he going to come around, do we need to phone an ambulance etc.  He doesn’t have that tiredness or lethargy commonly associated with Epilepsy seizures so very often he will have a seizure and go straight back to what he was doing previously – even in school on the few occasions he has had a seizure they have gone relatively unnoticed and he has been able to resume his work as before.

All in all, the more we learn about the illness, I do feel we are lucky and can see that although Luke’s seizures can be quite frequent when the medication has been ineffective, things could be worse.

So what’s been the biggest challenges then?  In the past 6 weeks or so Luke and I have spent a total of 16 nights in the Children’s Hospital – and that’s a tough place to be.  As an absolute control freak I find it so incredibly frustrating to lose all control of what’s happening to the doctors and nurses and other medical staff.  I can’t just go and get Luke his breakfast, he likes his Cheerios or Weetabix with hot milk in the mornings, so you need a nurse or assistant to fetch it for you.  The doctor will be around when he is around and not before, the nurses give out medication between 9pm and 10pm – it doesn’t really matter that Luke always go to bed at 8pm.  These little things probably seem absurd to everyone else, but there is  a reason why I run my own business and it is mostly because I like to beat my own drum, I’m fiercely independent and I hate being at the mercy of anyone else.  In reality the medical and nursing teams at the hospital are great, and do a tremendous job in a significantly under resourced and badly managed Health System…I just wish I haven’t had to experience it so frequently and so closely in the very recent past!  It has though in truth made me feel again how fortunate we are that Luke’s condition is not much worse, I have met with lots of mothers and fathers whose children are much much more poorly than Luke and we are in fact very grateful for our beautiful boy.

School has proven to be another challenge, one we are remaining to work through.  The Head Master is really great, before I had even contemplated what supports Luke might need once he was discharged from hospital he had contacted the agency Epilepsy Ireland to come out to the school to educate the teaching staff on the condition and had set everything in motion regarding some Special Needs Assistance.  Although it is yet to be seen how much if any cognitive and memory difficulties Luke will have – I am happy he will have a Chaperone on the bus just in case were to have a seizure and also to administer Emergency medication if he had a prolonged one.  Since his diagnosis he has only been at school 2 days, due to Easter break, a nasty viral infection and hospital stays, so I will likely have more to say on this subject in time.

Work has been pretty non existent for me, yes I run my own business which means I can be flexible and take the time off when I need it, but the reality is that this is not sustainable in the long term, and if I want my business to survive I really need to show up and put in the hard work.

I am still nervous about leaving Luke, I have a party that I as due to attend but I’m not ready to leave him at night whilst he is still having seizures in his sleep.  He is still adjusting to new medication so his mood is a little unpredictable, he has a short fuse and so I’m reluctant to take him places which might prove stressful for him, and us!

I just want life to go back to “normal”, and I guess what we need to do now is figure out what that means for us and get on with it.

 

 

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