My husband of 3 years has epilepsy which has mostly been controlled by meds, but now he’s been off work for 8 months. It’s been massively hard on us both, we’ve really struggled to get proper medical help, we’ve got money problems now and we’ve been struggling getting benefits. We were trying for a baby, but that really doesn’t seem like a good idea right now.
We’ve both been in denial and thinking that it’s just a phase and that has made it very difficult for us to accept this as our new norm. I’m starting now to think about the future, how I can reduce my working hours to look after him, how we can live off one, reduced income (impossible, we both have debts and a mortgage, would i have to sell our home and downsize?)
I feel very lonely. It’s hard to talk to my husband about it because the situation is very depressing for him, he was very successful at what he did before this and it frustrates him not being able to work or help around the house. He seems unwilling to accept that this may be our new reality. We don’t really have any nearby family that can help and I don’t like to burden them.
I’m just here because maybe it might help to get some of this off my chest, I can be quite stoic about it all but sometimes you just need a good complain and a bit of a cry, right?
Nothing wrong with having a good complain and this is as good a place as any to get things off your chest from what I’ve seen so far. Also several people here who should be able to give you some good advice or at the very least, point you in the right direction.
Has he seen an epilepsy specialist? How long since he had a seizure?
What sort of work did he do before he started having seizures?
What brought them on?
Adjusting to having epilepsy yourself of for a family member to have it, isn’t easy.
Has your husband’s consultant said he shouldn’t work indefinitely? Driving for example for a living is not an option if the person is not seizure free, but lots of other jobs are possible. There is info here about working with epilepsy Work - Epilepsy Action
If it is more a case that your husband has lost confidence then voluntary work might be a good starting point. Some organisations run supported voluntary work which might reassure both of you.
How frequent are his seizures? What sort are they? I understand that you want avoid unnecessary accidents, but he should be able to still help with household chores such as doing the laundry etc
I would try and keep working if you can, (even if you have to approach social care for someone to sit with your husband/check up on him etc ) for your own sanity.
Hey, he’s had epilepsy for over 20 years but in the last year we’ve had 2x episodes of him having almost daily seizures. So he had one yesterday. He’s seen specialists in the past and recently has been seeing one who has upped his meds but that isn’t working so we’re trying to get another appointment but unfortunately it’s been proving very difficult, missed phone calls etc from their end.
Hey Melly, thanks for the reply. he has had epilepsy for over 20 years and yeah he can’t drive. For the main his seizures have been controlled by meds but he is currently having almost daily seizures at the moment and in between struggling to understand where he is or what day it is and can’t really get about, so he can’t work. Especially as his job requires a lot of thought. They’ve been good and he’s on long term sick. (He’s the director of an organisation)
He has days where he feels a little better so yeah he helps around the house when he can and uses a cane. As it’s so variable he struggles to apply for, and receive any benefits but we’re currently trying to go through the process again.
Alice, I can imagine how frustrating this must be for both of you, and incredibly sad too.
I do hope the specialist manages to see your husband before long.
What type of seizures does he have? I know that there is epilepsy action UK, you could always contact them for some moral support, information and advice. Or take a look at their website Treatment - Epilepsy Action. Try to identify any seizure triggers if possible. Ask him to take control of his health, it actually may empower him. See this article with more information on wellbeing and possible therapies for mental health Wellbeing and epilepsy - Epilepsy Action. Has he had any tests? What were the results?
I hope that you do not mind me asking this but what caused his epilepsy in the first place? If he needs someone to be with him in case he hurts himself, call the local council tomorrow to request a needs assessment. But if the only real issue is his confidence, I recommend seeing if he can do some type of supported work. If the seizures last longer than normal call a ambulance or email his neurologist immediately.
Try keeping a seizure diary too. In it jot down the number of seizures, how long they lasted for and what exactly happened to his body each time. Make a note of the location too in case.
Good luck. I hope that you are able to see his neurologist soon and have some sort of concrete answers before too long. When you see his doctor again at the next appointment, ask about the various treatment options and methods including deep brain simulation therapy. Make a short list of questions on the treatment methods for the next appointment to ask the doctor.
Hi Thara, thanks for messaging. As mentioned to others above this issue isn’t so much we dont know about epilepsy (the husband has had it for over 20 years and we know most of the drills) it’s more that this current bout of almost daily seizures is a surprise. He’s only had an episode like this once before, a good couple of years ago.
We don’t know what originally caused it all of that time ago. He went through a lot of tests and it was inconclusive. He doesn’t really have set triggers, it’s complicated. His seizures cause other seizures in a way, so he’s stuck in a cycle until he can get the right meds. We’re seeing a specialist but each appointment takes months to get and the last one the specialist missed and didn’t call us.
His issue isn’t confidence, it’s that he sleeps most of the day, forgets the previous day/ hour/ has no idea what day it is and can barely manage normal conversation There’s absolutely no way he can work. Or really effectively manage his own health.
Hi Alice,
my wife’s epilepsy has continued to progress over the years, Lisa has seizures or clusters of seizures most days now, however thanks to the help of Adult Social Care we have a care package in place to support Lisa enabling me to continue working.
I hope things improve for your husband we’ve been on the long treatment road for many years.
Take Care
Paul
I know this post is a few months old but my partner has seizures (undiagnosed as he wont go to hospital but thats another story!) and everything in your post resonated with me so much, particularly the trying for a baby part. I’m currently in bed crying because we were doing ovulation tests last month and I didnt get a smiley face. Im 37 and scared I have dried up lol. We got one this month then his seizures came back. He is wiped when he has them, he cant get out of bed and sleeps all day. I feel so sad that my chance to have a baby seems to be slipping away fro us due to ill health
Thanks for posting though. It makes me feel better knowing I am not alone as I do feel it!
Hi aec83,
sorry to hear about your partner, he really should go through his GP if you suspect epilepsy and get refferred to a neurologist, medications could make all the difference and control his condition. Seizures do indeed wipe you out, i see this most days with my wife but her condition is severe. It would be better for him to get controlled before the baby comes along as the risks with a new born can be difficult to manage, as you say though time is going on but don’t give up just yet.
Best of Luck
Paul
It’s nice to get to talk to others with similar situations
There’s absolutely no way he can work. Or really effectively manage his own health.