The reality of living with a hidden disability

Today is a bad day.

Today is the day I admit to myself properly, for the first time how my condition limits me. I’ve told friends and family, but I’ve never really told myself if that makes sense?

I have Juvenile Myoclonic Epilepsy or Janz syndrome (among other conditions). It’s genetic. It’s lifelong. So far the medications I have tried haven’t worked properly. My condition isn’t as serious as some who have the condition, but it’s serious enough that it stops me doing things I would love to do for myself, it means I have to rely on my partner to do a lot for me.

According to the Government I’m not disabled enough to receive PIP and as a result I’m going through the appeals process. This means I can’t get the extra support I need to deal with my condition on a daily basis, it means my partner can’t claim carers allowance for the many, many hours he puts into looking after me and our little family. This means that currently, he isn’t getting any NI credits for his pension.

The reality for me personally, is that:

  • I have an average of 8 myoclonic seizures a day. Even with medication.
  • I have absence (Petit mal) seizures – not always sure how many. The clue is in the name.
  • I have poor memory recall. I’m lucky if I can remember what I did yesterday, never-mind a few months ago.
  • I rely on alarms to remind me to take my medication, and repeated reminders from my partner too.
  • My partner does a lot of reminding and making sure I have done things.
  • I have very little to no depth perception, or peripheral awareness. I struggle with balance, and I can’t walk in a straight line if my gait is tested. I also can’t ride a bike, or roller-blade. (Not that this is important, but it gives a better image of the big picture)
  • I can’t drive (well learn to drive). You have to be free of all types of seizures for at least one year before being allowed behind the wheel.
  • I have insomnia (again, among other conditions), which gets exacerbated by stress. This makes the seizures worse.
  • On a bad day, you won’t see me out with my family. I will be at home, hoping I don’t break any objects or any bones. Some days I can’t even pick up my son, because they will be so bad I am at risk of dropping him.
  • Today I have narrowly missed breaking a mug, a glass, and fallen on my backside. Thankfully nothing has been broken as yet. This isn’t including the other, more minor myoclonic seizures. Later I will need to ask for help at dinner, and I will need to stick to cold drinks so I’m not at risk of scalding myself with hot ones. The plans we had for today have been dropped simply because my partner can’t be in two places at once. So we are having an at-home day and spending time together as a family.
  • This isn’t everything. There are many other things I struggle with everyday. 

However, I am one of the lucky ones. I have a supportive family, I have supportive friends. I have a community I can turn to. This means that despite the challenges our family faces, we can home educate our wonderful boy watching him learn, grow and develop as a person. What can be better than that?

My only hope for the future is that this Government doesn’t screw us over so much that it makes it impossible for the next generation to survive. Life is tough enough as it is for those who need that lifeline and support. Who don’t have that support to turn to.

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