AIBU to be bugged by DH actions

[Clumsywith2leftfeet]

Apologies for the long post....I'm after some insight into something that is starting to really bug me in my marriage. I'm mentioning a few examples of a pattern has been going on for over 6 months now. It seems more and more that my husband and is kind and caring in public and distant and cold in private.

Background. We've been together 9 years and I have a long term medical condition, Epilepsy, which causes a great deal of stress for him as it has periods of seeming to be under control and then periods of 4+ seizures a week (which is the stage I am at now).

I am also recovering from a stress fracture of my heel bone caused by increasing my gym workout load too quickly (although I didn't know about stress fractures and the causes of them until I injured myself).

When DH and I are in public and people ask how my Epilepsy is at the moment and more recently what I've done to my foot etc, he's been supportive, sympathetic and caring. He helps with practical things as I'm on crutches at the moment and need a little assistance here and there, carrying things etc.

The couple of times I have had a seizure in public and he has been called by strangers who have found me (I wear a medical alert bracelet) he has rushed to me from work or wherever he has been and sat and held my hand, caressing my face, being affectionate and caring towards me especially when I have injured myself and strangers have called an ambulance.

As soon as we have been home, he's been distant, cold and snapping at me for days.

In the summer, I fell off my bike and ended up upside down in a ditch in a nest of stinging nettles and thistles with my bike on top of me. No one was around and I managed to gradually pull myself up (not easy with a bike on top of you). I felt sore all over having fallen against a concrete pillar on my way down and was covered in stings & scratches so I sent DH a text telling him what had happened and asking him if he could please pick me up. I realised it was 10mins before the end of his work day but they are incredibly understanding and fine with him leaving slightly early as long as he goes in early to make the time up and this was the first time I ever asked him for something to do with me.

He didnt leave work until 15 mins after his normal finish time, got to me with a look of thunder on his face, hardly said a thing except "get in" (to the car) and ignored me the rest of the day. Not once did he ask how I was nor in the days that followed and when I finally asked him what held him up at work, he said nothing, he just didn't see what the hurry was. (He only ever works late if hes making time up or stuck on a phone call).

When I have had seizures at home he later makes negative comments which make me feel like he thinks I've been letting the family down. Yesterday's examples "it's not as if you've been there for DS this week" and "well you can't exactly look after him can you?".

Last Friday, the day after I found out I had broken my heel bone, I was tired and in pain and had spent the day making and decorating our DS birthday cake (no excuse but a contributing factor) I said it was frustrating when I was struggling to carry things being on crutches that he hadn't put the shopping away when he brought it home and instead left it out on the kitchen side (he'd gone and sat down and was playing a racing game on his phone) he snapped at me (I probably deserved being snapped at given I wasnt exactly nice in my tone) and started swearing and said "its your own fault you're injured so quit moaning" then shouted he was fed up with all this s**t walked out the door and drove off for hours.

Sorry, this post has ended up being way longer than I thought it would be.

AIBU to be annoyed/worried by this all or just overly sensitive?

The risk would be very high on a bike ?

@itcoldoutside its risky doing lots of things. I cycle mainly on cycle paths...and by those I mean the ones that are away from roads and through cycle friendly parks when I am on my bike. The Neurologist basically said I am at less risk on a bike with Epilepsy than the thousands of people who ride without helmets and the statistics for cyclists for injury and death are about the same for people with and without Epilepsy. My seizures are 90-95% of the time within an hour of waking and late afternoon/evening and over night so I choose to cycle late morning and early afternoon.

It's about minimising risks without giving up everything that poses a risk or you become a recluse. Plus exercise is good for seizure control.

To put it into perspective....

Within 4 weeks of starting cycling, my seizures initially reduced from almost every night and 8+ daytime seizures a week to around ½ the nights and 4 to 6 daytime (not 4-6 days some days I had multiple fits) and since introducing extra exercise I'm down to around 4 per week altogether. So it shows why exercise has benefitted me and reduced my overall risk of, to put it bluntly, dying due to my Epilepsy. 1 fit in 1000 miles of riding and 2 falls is a small price to pay for less than ½ the seizures I was previously having and not having multiple seizures without awaking in between which is incredibly dangerous

DH has been under enormous stress in the last few years and the only way we have got through this is both being honest and talking all the time - and very importantly, he was a kind and caring man to start with. We wouldn't have managed to get this far if he wasn't. We frequently say how shit the situation is and we try and take care of each other and recognise the stress we are both under.

Webuilt - You sounds like you have a great relationship.
It's all about caring for and showing consideration for each other.

sound

but when your GP and Neurologist encourage activities, surely they understand the medical issues better than those of you who are telling me I shouldnt be doing these things?

Of course they do, which is why you should disregard the posts telling you you're putting yourself at risk. As I said previously, some posters like to blame the OP, whatever the question is, so don't listen to them. They're only making you feel more confused.

As you said, your medical team suggested this exercise, and you've noticed a marked improvement since starting, so you carry on as you were, and ignore the posters telling you you're wrong to be doing it.

He sounds like he’s resentful and could get more nasty and intimidating. Please be careful as he could seriously compromise your health with not providing vital care if this carries on

It boils down to this:

You require caring for.
Your husband resents having to care for you.

He may have thought about leaving, but feels trapped by your illness. He clearly worries about how he is seen by others...perhaps they are getting a bit fed up of him leaving work to look after you. He could be feeling pressure there.

This isn’t what you’ll want to hear, but I wouldn’t want to have such a worry filled stressful life either. And it’s not your fault, so what can you even do about it! He knows this as well.

I think the best option would be to find someone else to help, to take some of the pressure off your husband. And, if you hurt yourself in other ways like the stinging nettles...perhaps just look after yourself, call a taxi, etc to be mindful about how much you put on him when it’s not 100% necessary (I’ve fallen into stinging nettles as a child and walked about 2 miles home myself, so I know it’s unpleasant, but bearable).

All the best op. I hope you can sort things out.

OP as I said earlier I also have had epilepsy all my life. You can't put your life on hold. You have to live life as best you can at the advice of your doctor which is exactly what you have been doing.

I have never been made feel bad or guilty for having an illness I can do nothing about. I have always received great support from family, friends, colleagues and in some cases complete strangers throughout my whole life.

I do think your husband is being cruel trying to make you feel bad over something you can do nothing about

Yeah similar thing happened to me with an ex, OP. I had a seizure at work, he was called to come and pick me up. Did so and drove me all the way home ranting at how I'd inconvenienced him as his son needed to take his daughter to nursery and he needed the car. Why couldnt I have just slept it off at work. He was vile. Another time after having one in the car, he got out and left me to take in the shopping. After I'd had a seizure. Then buggered off upstairs. I sat in the living room and cried. Notice he is an ex. I figured if I couldnt trust him to look after me during my most vulnerable periods, then I couldnt trust him at all. Unfortunatly a lot of people dont get the after effects of having a seizure. The dizziness, the disorientation, memory problems bit to mention the risk you may have another one. My honest opinion is get rid of him. Like your DP, my ex was wonderful in public but vile and uncaring at home. It said more about him and as a result I left him. I'm now married to a wonderful man who does care and understands, looks after me and picks the slack up with DS when I've had a seizure. To blame you for not being there for your son has me spitting in your behalf. No one would ever, ever choose to have a seizure. Not sure if stress is a trigger for you, but it is for me. Look at it and think, realistically, what would your stress levels be like away from him? And whether that would help your seizures. Hes an ignorant twat though. I would talk to him, and if that doesnt work bin him. Your self esteem will soar. Wish you the best of luck

Probably will get flamed for this but I dont care. Reading these comments, has anyone here actually ever had a seizure? Or know what it's like coming round from one? The ignorance about epilepsy is staggering. You cant simply get up afternoon and carry on as if nothing has happened. You are dizzy, disoriented, and the chance of having another one due to the stress is quite high. There are also over 70 different types of epilepsy, all of which affect people differently. But if the OP has uncontrolled seizures 4+ times a week then her SH needs to step up, because being cold and cruel is only likely to set her stress levels off causing another one. It's not her fault, I'm sure if she was given the choice shed love to not have them, but choosing a partner with a long term disease is a commitment he made and he doesnt get to pick Nd choose when he opts in to help her not

I'm so sorry you're going through this OP. He's being a wanker and of course you don't deserve it at all. Everyone will get ill at the end of the day, or sometimes people have an accident or are in trouble. We have a right to expect our partners to support us as best they can, as no doubt you would/will for him if you're with him WHEN he experiences health problems. You deserve to be treated kindly when ill, or it is abuse you are experiencing because you're disabled and vulnerable (as we all will be one day.) None of this is your fault, and what you expect from a partner is not unreasonable. Hugs xxxxx

How frequent are your seizures? Can they be better managed with more/different medication? I don’t blame him feeling resent. He can’t always be on call picking up the pieces. You need more support that isn’t from him.

I agree @Whiskeylover45, and I myself was blissfully ignorant about epilepsy, not having ever really thought about it - I just assumed people had seizures but otherwise carried on with "normal" life. I didn't realise all the implications, the constant fear and uncertainty you live with, not being able to drive, the pulled muscles and bitten lips and broken bones, not being to have baths, kettles and gas hobs, the horrible meds with all the side effects, the embarrassment (and I know it shouldn't feel like this but you do) of your DH etc seeing you wet yourself etc, that you can just want to sleep for days and have headaches for days after a seizure, the frightening post ictal period where you don't know who or where you are, the associated effects of brain issues like memory impairment, baby proofing your house even though you're an adult, the constant fear you will have another seizure, living your life avoiding seizure triggers, people assuming someone has hit you when you have a black eye, the fucking nightmare of claiming PIP, you can't get life or travel or illness insurance, the fear that your children will find you injured and unconscious, oh and not forgetting the risk of status epilepticus/SUDEP (sudden unexpected death for people who don't know).

And then on top of all this you have the guilt of knowing that you are causing a large amount of stress and huge inconvenience (for want of a better word) to your partner. You know this but you can't do anything about it, this is how it is and this is your life, you can't change it.

So you live with all of that and it gets on top of you and your relationship is suffering and you're worried about the way your DH is lovely to you in public but unkind and unsupportive to you privately. So you post on MN looking for advice and support and literally the first post is just that "he sounds stressed" and then read lots and lots of posts focusing on how hard it is for your partner and how stressed he is and how you shouldn't be cycling because you're dangerous to other people and you sound moany and you sound like hard work, maybe you don't show him enough appreciation and do you thank him enough and it sounds like he is resentful of you.

And I know this wasn't everyone, some people were actually kind, and tellingly they seemed to be the people in similar situations and they understood.

This really is one of the walk a mile in my shoes situations but people don't think of that. Lots of people here clearly do not have one fucking clue what it's actually like but rush to judge the OP negatively without understanding what her own life is like and thinking only of the effect on her understandably resentful, long suffering, stressed DH, the poor man.

And i was so busy getting that off my chest I forgot what I was going to say before I lost my temper which was that DH and I talked about this only recently (when we had to back out of a very important, long standing commitment to his family ) and I said to him how shit it was and I was sorry he couldn't go. And he said that it was shit but it was just how it was and he would be a bit of a twat to accept an apology from me as though it was my fault.

There is a huge difference between being resentful of a situation and resentful of a person. And if DH did direct his resentment at me, or made me feel like it was, I don't think I could bear it. Being like that (especially repeatedly) with your partner, who you presumably love very much, is not the action of someone fed up with the situation, it's the action of someone who is thoughtless at best and unkind at worst.

webuiltciscityonsexistroles honestly couldn't have put it better myself. While my clonic seizures are in the main controlled (took seven years of keppra to do so) my biggest fear is that I will have one while holding DS, or fall on him. Or have one crossing the road with him. But according to some, all of what we have said is nothing compared to the stress her husband is under. But as PP have said, who do understand, you can't allow it to control your life otherwise you would never leave the house, which for me would be an downwards spiral. It takes me three days to get over a seizure. First day I just sleep and have no idea what's going on, second day I'm walking through brain fog totally disconnected from everything around me. Third day I'm feeling more myself though it takes another night of good sleep to get totally back from it. I'm just sorry your going through this OP you do serve so much more.

If you split up you obviously won't be able to call him when you need assistance so I think you should start putting alternative measures in place now. It might help the current situation and, if not, at least you will already have other people to rely on when you leave him.

Thank you to those posters who are posting about the reality of living with epilepsy. I had no idea how tough it really is. I have learnt a lot.

I think you were on my recent thread re changing to Keppra @Whiskeylover45

I know my post was an epic rant but I am in a foul mood today as I want to go swimming but I know no one else at home today wants to go and I can't swim alone atm. Although your post nails it, irritations like this are minor compared with the fears about DC - mine are much older now but they still worry if I have a rare lie in and wake me up to check I'm just sleeping and not post seizure. The guilt that I cause them this worry is much worse than the guilt over DH, but that's a whole other topic!

@Whiskeylover45 I dropped my DC when they were a newborn because of the exhaustion (and the fact I was undiagnosed at that point) I had a myoclonic seizure, thankfully they landed on the bed, but it was honestly the worst moment of my life. It meant that in the end, I gave up breastfeeding so that my partner and I could split the night shifts and he could take over for me to catch up on sleep when I was in danger of having more seizures. Funnily enough, I mentioned being worried about it to the GP when I was pregnant and they told me not to worry because it wouldn't happen! I don't have TC seizures but the myoclonic and absence seizures are awful when they do hit. They're getting better but still not fully controlled. Anxiety/stress makes it a lot worse.

webuiltciscityonsexistroles true but your point about being unable to do things is just as valid :) it is frustrating, irritating and rage inducing simply because it can be life limiting in the sense you can't just jump up and do what you want when you want. Everything has to be thought through just in case. And it sucks. I was lol, when I read your title I thought oooh that was me! It's also nice to read about others experience with epilepsy and medication :)

Aveisenim I can well understand that. I remember having my first clonic seizure after having DS (thankfully he was with his dad in the other room) and sitting sobbing to my sapphire nurse about what happens if I'm holding him next time? I'm sorry you went through that. I also have absences lol. My clonic seizures are well controlled now, and I have a few absences, and I understand compared to some like the OP, I am very lucky in that sense. Like you stress, lack of sleep and too much alcohol sets mine off, so a lot of it for me has been down to trigger management. However a lot of what the OP said rung with me as my ex was just like this so I can understand how torn apart she is xx

He's at the end of his tether.

He's earning the money the household needs, but can't just be left to do that as that is interrupted.

He has your health to worry about, which is hugely and practically demanding.

But in addition to that, you have accidents doing things which are leisure, not required and that is causing him to have to take the reigns beyond what he needs to do already.

If I was him, I'd be exhausted, especially without an end in sight. He's only human.

@JamesBlonde1 But she's been advised to have more exercise, as has been pointed out several times so she wasn't being reckless. The trouble is, it will lead to accidents. Her DH has a wife with epilepsy, which is something they both have to live with and it won't be easy.

As I said, I've got complex PTSD and ME. It isn't easy for my DH, I know that. Sometimes it gets on top of him and he gets impatient. But he isn't nasty about it, and he doesn't make a special show of being a supportive to me in public whilst being cruel behind closed doors.

But in addition to that, you have accidents doing things which are leisure, not required and that is causing him to have to take the reigns beyond what he needs to do already.

Nice bit of victims blaming there, plus the OP says her seizures have reduced due to exercise which she’s been told to do.What’s she supposed to do? Sit quietly in a darkened room for the rest of her life?

Well perhaps don't cycle, where if there is an accident, the consequences are greater.

Are you medically qualified? OP's own medical team were the ones who suggested it, and she's only had one seizure while on the bike.