Epilepsy nurse letter

[ldgso]

I am currently pregnant and suffer with epilepsy (mainly awareness seizures).

Since becoming pregnant, I have had a lot of them. I had 10 days of having 2/3 seizures a day. I have taken a month off work.

Epilepsy nurse got in touch and I told her I was off work and that the seizures had lessened but were still happening every few days. I probably didn’t make it sound like a massive deal.

I then received a letter in the post from her to the Dr saying how I’m coping really well and the seizures aren’t impacting me. This is completely untrue. She didn’t actually ask me how they were affecting me. The truth is I get exhausted from them and I’m sleeping for a couple of hours every day, I can’t string a sentence together for days after having them, can’t finish my sentences, get confused doing basic tasks etc.

I’m quite annoyed that she’s put this as if I need another sick note and they read that letter, it looks as though I’m bouncing around at home absolutely fine.

I’ve written back to her saying that they do definitely impact my life and stated all the reasons etc. I’m also worried they will turn into a full blown seizure as happened in a previous pregnancy.

I assume she’s not going to send another letter saying ‘oh actually, it is affecting her’. Is there anything else I should do? Do you think the Dr’s will check through these letters before issuing an extension on the sick note?

I know as soon as I go back to work, they will pile the work on and I’ll be back to square one.

I would contact them and reiterate that they are impacting you less only because of changes you have initiated - the sick leave and so on. They are still impacting you significantly however.
I'd also make an appointment with the dr to explain how you are currently doing.

I don't have epilepsy but do have a life long mental health condition and can definitely relate to the "not as awful as it was" being interpreted as now fine and it's been important to reiterate that I may now be able to do xyz but can't do this and I can only do xyz because of these lifestyle adjustments which has an impact on the life I can lead.

Perfect, thank you for the advice. I will do exactly as you have said.

It is annoying that they assume because it’s slightly better than what it was, that it means you’re fixed and back to normal when that’s not the case!

When she responds to my first email, I will also point out that it has only improved due to me being off work.

Thank you!

Of course they are affecting you! You can’t work! If that isn’t affecting you then what is?

I don’t have any particularly useful advice but just wanted to say please look after yourself! I’ve got epilepsy and 2/3 seizures a day must be absolutely exhausting - just one wipes me out for a few days! Are you having regular appointments with your epilepsy nurse/consultant? Might be easier for them to ‘see’ how much it’s impacting you if you’re there in front of them?

I sent her an email detailing how it impacts both my personal life and work life.

She asked if I would like her to amend and resend the letter, so I have said yes to this.

It’s silly that she didn’t directly ask me how it affects me. A lot of the chat was based around her telling me facts and information about epilepsy and pregnancy, so I didn’t actually think to let her know how it was affecting me. I just assumed she’d realise I wasn’t doing brill.

Hopefully it’s all sorted now!