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?

Be sure you're thorough when finding someone to help you work out OP.

Anyone I've worked with like a PT / physio etc has asked what meds I'm on when I fill out a new starter / first appointment form. Then if they've not been sure of the risks or impacts of my epilepsy meds they've gone away and done a bit of research.

Some of them have also asked me to get the OK from my GP for their plan of action.

I'm hyper aware of how strong epilepsy meds are and always trying to mitigate risk of seizures so if someone didn't ask for info on my meds and check the impact then I wouldn't be comfortable using them even if they were lovely.

Sorry to hear about your fit on the bike, that must have been really scary I can imagine

I doubt a PT would be aware of the specific risk linked to epilepsy medication

Yes. What I meant was that the PT would know OP was on medication (registration would require OP declare this I think?) and would require her to check with her GP that it was OK to do the program they devised for her. Is that how it would work?

...which avocado has just said. Thank you!

Not really understanding the point of this thread.

He doesn't seem all that sympathetic. But hardly abusive, as people are jumping to judge.

OP does sound moany.

Doesn't mention anything else about marriage except he kept her waiting 15 minutes once.

Maybe they don't like each other much, but who can say on the basis of 2 such random petty incicents. I'm not 'hearing' anything else about their relationship.

Op, it sounds as if he is resentful and that an destroy a marriage. I think this can happen especially when men or women hit midlife and they realise illness and disability could be a factor in their lives. Either ill health for themselves or through caring for someone else.

Have you felt as if your H has had genuine empathy before? If so then maybe it is empathy fatigue which I think is easy for people to criticise but many people don't cope well when a partner has a long term health issue.

If you spoke to him what would he say? Does he go out and have time to himself having fun?

I agree with @AutumnConker

So a previous thread where he pinned her to the bed isn't abusive? It was linked to earlier on.

@TheOrigFV45 no a PT wouldn't necessarily know, they'd recommend going to the GP who would recommend getting advice from the neurologist/specialist who would have a more in-depth knowledge of the medication and how the epilepsy is at the moment.

I went for an assessment with a PT last year and their knowledge regarding epilepsy was pretty much non-existent. (Not saying that's the case for all, just that it's not their area of expertise)

i am very sorry OP that you have epilepsy. I used to be a nurse and it can be debilitating and a real downer . However I don't think you do yourself any favours here. Cycling is bloody risky if you have the condition, I'm sorry but it is, you could cause an accident. I think your partner is at the end of his tether. I'm so sorry that a 100% normal life seems difficult, but I've met very few men who want to be a carer, even when they 100% love someone. I think your relationship has other issues by the sound of it and hence his desire to feel like a carer is even less. I'm sorry it sounds harsh, I think it's the truth and I think you know it. If you want to save things I think you need to understand he needs to work, he can't be a carer at your beck and call. You need to source other help and find things to enjoy that don't put you so mch at risk of injury.

I think it strange some people have been defending the OP's OH. He sounds a stroppy wanker. Sorry you're going through this @Clumsywith2leftfeet xxxxx

@Clumsywith2leftfeet there are always people who like to give the OP a kicking on AIBU, there are also people who don't recognise abuse, and make excuses for an abuser's behaviour. There are also people who only read the first post, or skim read, and miss relevant bits of information, so don't take posts telling you that it's all your fault, or that you're in the wrong, as the truth. And it's best, when you post about your relationship, to post it in the Relationships forum, rather than AIBU, as you'll get more supportive replies there.

You need to speak to Women's Aid. They will understand you and will give you the correct advice, without judgement. Please ring them.

To be honest her username already makes it sound like she's a blooming disaster!

@Horehound... username is how I've felt in the last 6 months... if you read my posts you'll see that this isn't normal for me to have so many accidents

So what are you Gona do?

@Motoko thank you. I'm still confused at the moment. My previous marriage was physically abusive, and took me years to work up courage and strength despite being scared. The thought of this marriage not being normal didnt even cross my mind despite his ups and downs until I started to see things on TV which has made me question it. I'm very confused at the moment, questioning a lot and this time it has been the noticeable changes between him in public and private. I dont know if this is a recent thing or I have chosen not to notice it before. He had always been a bit moody, so am I (and prob most of the population). Not sure how much is due to my mental health at the moment interpreting things differently or whether I am scrutinizing everything looking for patterns.

I am getting more convinced that he either doesnt listen to what he's saying or is trying to convince me what I think it hear is wrong when he tells me things.

Thank you for the support I have received on here

Is there any chance he's just worried about you? My partner has epilepsy, but he's sometimes silly with it - he'll forget to take his meds, or he'll come to bed at a time that only gives him a couple of hours sleep .. which he knows can trigger a fit.

If he followed medical advice, I am convinced he would never fit.

Watching him have a fit terrifies me. The noise he makes when the air's pushed past his vocal cords, the actual fitting which always seems to last just a tad too long, and the the horrible, laboured breathing, and hours of confusion that follows. I always sit with him as he tries to get up as soon as he can, but he's confused so sometimes falls over. It scares the hell out of me, and I will admit that in the couple of days following a fit I am grumpy. I love the bones of the man, but it scares me so much, and I am terrified that one day he will die from it.

That sounds like gaslighting to me @Clumsywith2leftfeet. Your confusion, is one of the reasons I've suggested you have a chat with Women's Aid. You've got nothing to lose by ringing them, and they should be able to help you to sort out your thoughts, as well as give you advice on what you can do.

How long after your last relationship ended, did you meet your DH? A lot of women go from one abusive relationship to another.

I would believe that it was genuine concern, if there wasn't the difference between his public and private treatment of the OP. That is worrying, as far as I'm concerned. There appears to be gaslighting here; I'm aware of that as gaslighting is something my abusive F was an expert at. We never worked out until after his death what was actually going on. He had done a real number on my DM, who is a highly intelligent woman with a PhD (completed in her 70s).

We're not there, OP. You could benefit from processing things with a therapist?

We've all been hugely damaged as a result of this, OP, particularly my DB. Gaslighting is the worst form of abuse because it makes you feel that you're losing your mind. In view of the fact that you came out of an abusive marriage and are disabled does make you vulnerable.

But you were strong enough to come out an abusive marriage so you can find your own answers, with help from Women's Aid and a good therapist.

It sounds like he's stressed and to be fair, you wanted him to leave work early because you fell off your bike? Surely you can see that is a bit weird and you're treating him more like a parent than a partner? It doesn't sound like he is annoyed with you having epilepsy but more the injuries you cause to yourself by falling off your bike and over doing it at the gym? Maybe keep yourself a bit safer

i am very sorry OP that you have epilepsy. I used to be a nurse and it can be debilitating and a real downer . However I don't think you do yourself any favours here. Cycling is bloody risky if you have the condition, I'm sorry but it is, you could cause an accident. I think your partner is at the end of his tether. I'm so sorry that a 100% normal life seems difficult, but I've met very few men who want to be a carer, even when they 100% love someone. I think your relationship has other issues by the sound of it and hence his desire to feel like a carer is even less. I'm sorry it sounds harsh, I think it's the truth and I think you know it. If you want to save things I think you need to understand he needs to work, he can't be a carer at your beck and call. You need to source other help and find things to enjoy that don't put you so much at risk of injury.

I agree with this ..

OP have you considered a Seizure Alert Dog ? might be Safer long term.

@BumbleBeee69. Looked into it and I dont qualify for a seizure alert dog. One of the requirements is for you to have had your Epilepsy controlled by medication for a certain period of time, (I think when I read it was 2 years which I've never got to) and you can't already have a dog

you can re-apply though right ? after you reach the required time period and conditions.

It's a difficult position really. I'm told to get more exercise and exercise plan agreed by Doctor and Neurologist. They encouraged me to ride my bike for independence as the risk is not that high. I ride 1000 miles in 8 months and have 2 falls, one I'm injured by plus 1 seizure and I think they are pretty good statistics really. When I had my seizure, my GP encouraged me to get back on my bike and not lose confidence as state of mind and mental health is very important with seizure control.

The gym was agreed with as a safest place to exercise. People around me, not alone etc and I get a random stress fracture that yes is an overuse injury but the amount of exercise that caused this injury was 22 mins on treadmill for 3/4 days which most people wouldn't consider over doing it and as I explained I hadn't heard of stress fractures and I had not pain or discomfort prior to this.

What do people expect me to do. Stay at home and wrap myself in bubblewrap? Not do things because I'm disabled? I could have another seizure crossing the road (which has happened to me in front of cars) I doubt people would tell me not to walk. I had a seizure and almost ripped my ear clean off when I fell down the stairs and hit the radiator at the bottom....should I not use the stairs?

Having Epilepsy is about doing the best for mental as well as physical wellbeing. A large proportion of Epileptics suffer from depression and become isolated. I suffer from depression and am trying to avoid isolation. Both my GP and Neurologist have praised my positive attitude.

I texted my Husband as he has always told me I should if anything happens to me. That he is only at the end of the phone. In hindsight I could have waited 10 mins, but has anyone ever felt so emotional after an accident that they arent thinking straight and this was my first fall off the bike. I was sore and I had our 7 year old son with me who had got very upset that he couldn't help me up. It was a misjudged of the edge of the path due to overgrowth of greenery...pure accident that anyone disabled or able bodied could have had. Who better to get in touch with that son's father and my husband?

Yes I am getting defensive but I am trying to live as normal life as I can and there is a higher risk of everything I do, 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?

@Clumsywith2leftfeet this thread makes for a depressing read for me as someone with epilepsy and a DH who cares for me, so I can only imagine how it feels for you as your own thread. There are far too many comments to take issue with and no one here can say exactly what the truth of your relationship is but I think in general...

Firstly, whatever level of activity you undertake I am assuming is agreed by your neurologist/care team and this isn't what you were asking about, or need unasked for advice on. As you say, there is a risk with every single activity you do, every single day and you have to live your life, not sit on the sofa 24/7 (or lie down on the floor in case you have a seizure on the sofa )

Secondly, no one wants to be a carer FFS
 and I know that people shouldn't feel they have to be - some people simply can't do it but it's better to be honest and say that and get other help in place than be resentful and take it out on the person needing help. Just like we have the responsibility of managing our own health/avoiding seizure triggers, not just for ourselves but to reduce the burden of care on others, the carer has a responsibility to be honest about what they can and cannot do.

Also, this situation is underpinned by the type of personalities involved (and in your situation OP I think this is the most important point). You can be in a caring situation and be a kind loving person and still struggle, so if you are a selfish unkind person to start with it's even worse. The fact your DH puts on the act of a concerned DH in public only is (IMO) exactly that - an act. It's not his true self and I would definitely try and get independent counselling and unpick this. Someone who can get the full picture not just a few posts on MN, and who is qualified and experienced to help you.

I know how hard it is, my epilepsy is uncontrolled atm and we have had the unexpected seizures and injuries and calls from hospital and ambulances and can you leave work now requests. Witnessing them is terrifying and him worrying when I'm alone is frightening and stressful. He is also responsible for so much stuff - all the earning, losing work and wages, all the driving, all the stuff I can't do for safety reasons and there is other stuff going on too (too boring and long)

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. Eg I tell him he looks tired and put off my bath so he can sleep, he leaves things ready for me so I don't have to boil kettles etc.

I think unless you have been in this same situation it's so hard to give advice as you simply can't imagine it and it isn't something you can predict. You simply can't say "well I would act this way or DH would act this way" or "what you should be doing" because you just don't know.

Equally, none of us know exactly what your DH is truly like and what your relationship is like, you need proper RL advice on that. I just wanted to say I understand and hope you aren't too upset by this thread.