To be really nervous about potentially calling in sick tomorrow?

[Lorelia]

I've had three days sick in the last 7/8 years- I'm lucky to usually be pretty healthy and because my body hates me, I usually get ill when I go on leave anyway!

But I have epilepsy that is usually managed by meds. I didn't have any seizures for about 5 years until a few weeks ago when one came out of the blue. Thankfully it was a Friday evening and I was well enough to return on the Monday. I've had a few more in my sleep since and it's culminated in a large one yesterday morning. I still feel awful, I've given myself a black eye and I've spent most of the day asleep. I'm hoping to feel brighter in the morning but I suspect I won't be well enough to do my 12 hour day.

I know I need to see my neurologist and I know that I need to tell work and I know that I need to find out what's triggering them.

But work is manic at the moment and me taking time off is going to have a large impact on my team. October is a particularly busy month and no-one in work knows about my epilepsy.

I have an ill elderly mother and my DP has been made redundant and so all the financial stuff is on me currently (he is looking though of course!)

I feel like I haven't got the time or the headspace to be strong enough to do all this again. To change my meds and deal with new side effects, to have to tell people in work etc.

On top of all this, my employer is making redundancies at the moment with attendance being used as a criteria - this really is the WORST time for this to happen and I'm not sure how to juggle it all.

Anyone got any words of wisdom?

Fellow epilepsy sufferer here who has had a LOT more time off that you for my seizures including two hospitalisations- just tell them. They can't help you if they don't know and every employer I've ever told about my seizures has been utterly brilliant.

Also you're untouchable re absence (especially if it's a one off!) epilepsy is a disability and it's a protected characteristic. Just be open and honest with work and let them support you.

I’m sorry OP. Are they tonic clonics? My adult son has tonic clonics (also none for 5 years touch wood) and I know how they wipe him out.

i’m sorry I think you need to tell work. It should make you harder to make redundant though?!! (Sorry to put it like that, but it’s a reason to tell them rather than be off sick or struggle through feeling terrible and unable to give your all).

Also re meds change it might not be new medications- possibly just an increased dose (which I've always found less disruptive than starting a totally new drug.) You need to speak to your team though- do you have an epilepsy nurse?

Sending lots of unmumsnetty hugs- post seizure time is horrible and the last thing you need is to be worrying about work

Thanks @Beansonbeans good to hear you've had support in the past - hope your E is more manageable these days. When I was younger and not in the right meds, I struggled with much more regular seizures, in public, in work etc and I really was miserable. I just don't understand how everything can be okay for 5 years and then suddenly the meds stop working 😣

Thanks @Sindonym yes TCs - glad to hear your DS is doing okay with his. I hadn't thought about it like that, I just feel really bad for my team. We've been carrying vacancies for over 12 months and everyone is super busy. Any time I have off is just going to make that much worse

You need to tell work about the epilepsy. As PP have said, it's a disability so you have special protection under employment law.

If was your colleague and I knew why you were off I would not resent you for a second.

I hope you feel better soon

I see a nurse from the E clinic every 12 months but there is an advice line - Do you think they'd be able to help quicker than going to the neurologists secretary?

You are ill. You have a disability and need time to recover.
tell your employers the truth and they can’t sack you because you have epilepsy. If anything they may he concerned and fully support you in having time off to get your meds sorted

I have no experience of epilepsy but always tell work. If you let work know you have a managed condition that sometimes requires sick leave you will get far more sympathy that suddenly randomly taking time off and not explaining why and trying to go into work when you are not well.

Also, how old are you and couldit be the menopause. I had a line report with a different chronic condition who found her meds needed changing during the menopause. It took about a year for things to settle down but because she was open about it with me we could manage it and resource accordingly.

I’m so sorry you’re going through this. There is zero reasons to worry about except for actual seizures. Be honest with your workplace, say exactly what you said in this post. You suffer from epilepsy and haven’t had any seizures for 5 years but unfortunately had some now so need to recover. Please care for yourself, your work will wait. Your reasons are genuine. They have zero rights to discriminate against you.

because my body hates me, I usually get ill when I go on leave anyway!

This caught my eye. We have just had a bit of a focus on well-being and stress reduction at work. Getting I'll whenever you go on leave us a classic sign that you are 'living on adrenaline'.

It's a natural response to stress to flood your body with adrenaline. That's why you can stave off bugs and things while you are at work. Once you get a rest, then you have limited defence and get whatever is going.

I'm not saying it's easy, but forewarned is forearmed. Any thing you can do to reduce your stress would be well worth while, starting by making at least your manager and/or HR aware of your disability and to make sure they make reasonable adjustments, including allowing you whatever sick leave you need to heal.

All the best.

Yes definitely go through your nurse as a first point of call. They can get your GP to prescribe rescue meds and will get you in the right queue to speak to a neuro (might not be your own) quickly.

Mine are up and down depending on stress and tiredness. I was not taking them seriously and after a hospital stint finally began to put my health first. I've owned the condition with work and it's honestly the best thing I did

Thanks everyone! I wasn't sure what I was looking for with the post really other than a bit of a rant so really appreciate all the responses

I don't think I'm in the menopause yet but definitely worth a conversation - I'd love to understand what's suddenly changed.

I don't want people to think I'm unreliable and I don't want to give anyone an excuse at a time of quite severe cuts across the business. I know they can't technically get rid of me because of the epilepsy, but it doesn't mean they can't be more motivated to find a reason to get rid and a redundancy programme may be exactly the opportunity 😔

@FinallyHere that's super interesting. I've always thought it was my body's rubbish timing! It is quite intense in work at the moment and I wouldn't be surprised if I was a bit stressed. But the nature of my job is that I need to be able to handle that

Thank you @Beansonbeans I really appreciate your insight.

We did identify stress as a potential trigger many moons ago but since I was settled on these meds, at the right dosage, things seem to be completely stable. Just feel a little like I'm moving backwards.

But moaning about it isn't going to change it. I will call the nurses tomorrow and get the ball rolling - thanks again for the advice

One thing that really stands out to me is the amount of pressure you are under. Stress can be a huge factor for some people with epilepsy. I don't know if it's a trigger for you but it might be worth thinking about especially if perhaps your stress levels have slowly crept up over time?
But please do talk to your employer and explain what's going on. The fact that you have had so few days off ill in such a long period of time will show them how committed you are to your job and that your not taking advantage.

Look after yourself

Ah OP, just from your few posts I can tell you are a hard and conscientious team player. That and a diagnosis of something as “concrete” as epilepsy means I am SURE your work will know you’re not taking the piss and will only be concerned for you.

Rest up, hope you get it under control soon. 💐

It could well be stress. Mine were triggered by tiredness, but the last one I had is suspected to have been caused by a covid booster. I don't suppose you've had a covid jab lately?

Thanks - things have been going wrong all at the same time at the moment. Feels like we're on a road of bad luck but hopefully this is the last thing. We really can't afford for me to be jobless, especially with everything going up in price.

Thanks @Intelligenthair what a lovely message. Its usually a nice place to be but with times being hard, vacancies not being backfilled and redundancies on the horizon, things definitely feel different.

I've had all my jabs but I don't think the timing would be quite right. I did have covid not too long before the first recent seizure but I had a pretty mild case. I was able to carry on as usual, albeit working from home. I hope your seizures have settled down @wizbit93

Thank you. My last one was in December. I'm really hoping I get my licence back soon!
All the best. Hopefully it's just a tweak of meds you need. My lamotrigine was upped after I had mine.

You really need to tell work. Aside from any other considerations, what if you were to have a seizure at work? If they know that you have epilepsy, they can ensure that they know what to do to help if that happens. If it comes out of the blue, they may not have a clue what to do. Any decent workplace will want to know so that they can support you.

You sound very committed and like a real team player - I am positive that they aren’t going to see this as any kind of ‘excuse’.

You're putting way too much importance on your work my love. Don't ever forget that you are dispensable at work but indispensable at home. Get your sick line in and get some rest.