Partners

Hi,

I would really like advice on how to get your partner to understand what you are going through. Do any of you have switched on other halves who ‘get it’ and see your suffering? If so, how did you get them there? I know it’s being sexist but I would be particularly interested in hearing from anyone who has managed to get through to a husband or boyfriend that just because you can still manage to get through a day at work and cook dinner and get kids to bed etc each day doesn’t mean everything is OK. Especially if you achieved success without being a constant moaning nagging cow. Is there a way?

My husband lives with his head in the sand and I feel that him not knowing how crap I am feeling has created a big barrier between us. When I first got ill I asked him to read some things on the labs site and he goes to appointments with me, but it all dragged on so long and I saw so many different people before I got the MAV diagnosis that I don’t know if he actually could name what is wrong with me.

I also question whether he believes it is real. He recently took on a personal project which means he is out a lot at the moment and took various factors into consideration before embarking on it, but my illness was not one of them. He talked over the difficulties with a friend but didn’t mention that his wife is ill. If I had a more common illness I think he would have.

He also says he supports me (emotionally) if I want to go part- time at work but says I must continue to earn at least as much as he does for us to get by. Financially, he is probably right but it doesn’t leave me feeling I have much choice.

He also never asks how I am feeling or if I might find something difficult. He has never asked what it is like. It makes me feel alone. Sometimes I think I should give him a shock by refusing to get out of bed for a week but much as I would like to shake him up a bit I don’t want to worry my kids.

Sorry about the self pitying nature of this post. It is because on the surface I appear to cope so marvellously, that I need a little space to feel sorry for myself once in a while.I also don’t really want him to know quite how low I feel sometimes as I am a bit ashamed I suppose. He doesn’t understand anxiety or depression.

Are any of you struggling to get through to loved ones? What is the best way to educate without scaring and depressing the one you love?

Hi Nubs,

Your message could have been written by me a while ago! I think on the surface I’ve put on a facade of being able to cope and perhaps it’s not been the best way to do things in hindsight.

My husband was supportive to start with, but I think he kind of got fed up with it as time went on. I can’t blame him for that (I’ve got pretty fed up of it too!). I think because I was managing to work full time and write up my PhD thesis and look after a family it kind of gives the impression that I’m not too bad, whereas most of the time it was a big struggle for me.

I honestly don’t know what to suggest about you getting through to him, although if you could perhaps arrange to be away for a few days (do you have any courses or conferences you could go to with work?) and leave him to cope with everything on top of his own job, then maybe we would get some perspective of how much you do (i.e. working, cooking, looking after the kids), even if it won’t give him understanding of how ill you feel at times. I am not saying this applies to all couples, but most that I know don’t share family life responsibilities out half and half even when both partners work full time, and it’s generally the woman who takes on more.

The only other suggestion I could make was to let him read what you’ve written on here, if you felt you could? That might get through to him also, as you describe so well how you are feeling at the moment. But I realise that you may not feel you can do that, as I know I’ve liked having anonymity on here so I feel I can say anything!

I’m luckier. My sweetie has been with me on this since Day 1. It was as much a relief to her as to me when they finally got my dx right. Perhaps this has something to do with the dozen-plus years of work we’d done by then on our communication.

Hi Nubs
I think David has hit the nail on the head! It all comes down to communication! It is hard for anyone who doesn’t have VM to actually ‘get’ what it is like, no matter how caring or understanding they are. So, the only way they will know, on a day to day basis, is if you tell them. And this can be done in a gentle, caring 'matter of fact way - “this is my situation at the present time & I’d like you to take over please as I need to rest to get my dizzy head straight.” Even chidren of a young age with parents who have a disability are happy to help when needed.
I understand you want to get on & do all the stuff you used to BUT you have a chronic illness and both you and your family need to understand and accept that. So revisiting the nature of Chronic Vestibular Migraine, the importance of keeping stress levels as low as possible and being aware of the possibility of relapses could open up the subject & discussion between you. There are counsellors who are experienced in helping people with chronic conditions so you may find one who can help you both.
Barb

You are all right and I will try to keep on saying how I feel and when I need help. I will try to do it in a matter of fact way without getting angry and resentful. We have been together for 23 years so although the communication should be pretty well established by now it is more a matter of renegotiating roles and responsibilites. I am not the super independent, headstrong girl I once was. I am worn out and struggling. :frowning:

Thanks for your replies. It does help to know there are people who understand.

Hi,

I may be going over old ground here but the first thing I did when I got hit by this, and when a new person comes into my life, is to print off or forward them the MAV survival guide from here, with the most relevant parts that affect me, highlighted.

I also earmarked pages/highlighted sections in the Heal Your Headache book and gave them to my Dad and boyfriend to read.

These 2 things explained how I felt and showed that it wasn’t me just whinging about nothing- what was wrong with me was a real medical issue.

From there, when I’m struggling, I tell them and don’t hold back. I will also cry, sob, shout it’s not fair. Yes, I regress to a 3 year old at times, often not helpful but it feels better afterwards.

I really think the key is, when you’re struggling don’t hide it. Ever. Confide in your partner. That’s what they are there for. And they should know how things affect you. Tell them everything. I run the risk of becoming a stuck record but I want him to know why I’m not wanting to go for those drinks, or why I’m being a grumpy old cow. I want him to know how it is to live as me, and hopefully he wants to know too.

I am a bit of a gobby loud mouth though. If I am feeling extra dizzy, not only does my partner know, the whole office knows. Some people will describe me as obnoxious. So I’m not bothered about saying it as it is or whinging. Just the other day someone commentated on my facebook “shit, how long have you been getting migraines for? You’ve never mentioned it before now”… Obvious sarcasm in response to my “Work all through Easter til now. Look forward to finishing and going to the pub. Then get hit with dizziness so bad I can’t walk. Am SO SICK of this fucking migraine bullshit. Every month it’s different. I have had no chocolate all Easter and yet I STILL get stuck with this. RAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAH. :(”

I don’t know how anyone lives through these symptoms without expressing them to anyone. I would go insane. I understand it might be difficult with kids, but you are still your own person and you still deserve to express your own feelings. Just because you have kids and other priorities in life, doesn’t mean you have to stick yours down the priority list. After all, your bloke surely wants his kids mum to be healthy and well.

In return for listening to me droan on, all Mr MM asks is that I do all the right things to look after myself- diet, sleep, pills, reduce stress. If I wander off tha path, he lacks sympathy because it was my own fault. He’s a bit strict like that.

Why not show him your posts too? I did that with my bloke too in the past. Sent them as a link. Helped him understand exactly how I felt and the suggestions from you guys. I think that was pivotal in the early days for him understanding exactly how it is to live with this and to learn that it wasn’t just me with this too.

Good luck xx

well i’m coming from the other side of the fence, as it’s my hubby that has VM, and has had for nearly 2.5 years now. Controlled variably with meds.

At times I really struggle to understand how it is for him. I worry I’m not supportive enough, too supportive, not understanding, too encouraging… it’s really hard to know how much he can & can’t do sometimes. And he’s human. Sometimes he’s just plain old lazy hubby! But more of the time he’s just struggling all the time. And when the VM is worse, his ability to communicate pretty much disappears, which generally exercerbates the tension that goes with 2 kids under 5 & both of us trying to run our own businesses. You know, the whole life is busy kinda stuff!

However, one of the best things I ever read was this article:
butyoudontlooksick.com/wpres … on-theory/

Maybe your hubby needs to read this, and you can talk in terms of spoons. It gives it a language you can use. And I know that just when I think I’ve understood his VM & how it is… then it always changes again. And it helps me to understand that he’s always counting spoons.

Oh and you asked for the best way to communicate without scaring & depressing? When it comes to VM, unfortunately that’s the burden for the whole family - not just the sufferer. There is no disease out there that doesn’t impact loved ones. If it scares him & depresses him then that’s part of love & life. And it might help make sure he & you try to get some support dealing with it all.

i have put a brave face on this sh1t for a year now!! I always pretend I am ok when I am not!! Nobody will ever understand how I feel. I have tried to explain but it’s pointless!! Unless you have had it you won’t even come to close to understanding what it is like. On the outside i look fine but on the inside i am in a world of pain. (might have something to do with all the easter eggs i have eaten) I refuse to let this thing beat me!! :smiley:

I’m sorry but I really struggle to understand why anyone would pretend to be ok for the majority of the time.
You’re not weak to admit that it’s hard.
Surely you’re putting increased pressure and stress on yourself if you don’t share it?
My bet is if your partners actually red what you wrote, they’d be shocked and upset.

If I keep busy and carry on as normal I normally I forget about being dizzy. If I sit at home feeling sorry for myself I found I home in on being dizzy and I feel worse.

You can’t explain this sh1t to people. i use the forum and you lot to share it with :smiley:

Rob - I know what your saying. I think a big part of this is getting your head right. I often put a brave face on it.

Hi,

Belfie- I think it’s great that you are so supportive to your husband, even taking the time to join in here. I’m sure he really appreciates it, even if you don’t get it right one hundred per cent of the time. It must be great to have a partner who is so encouraging and well informed. Hats off to you!

Miss moss- I see where you’re coming from and obviously openess is healthy most of the time but I think there are personality factors involved too. You sound pretty extrovert whereas myself, my husband and our children are all on the shy side. We all have a tendency to be quiet and reserved so perhaps we don’t let off steam enough generally. I also have to act the part of a primary school teacher and school leader so I am always in role during the day. I can’t even swear or even grumble in the staff room without being accused of being unprofessional or spoiling the ethos!

I have to put on a brave face in front of my children and I have a teenager who stays awake later than I do so moments alone with my husband tend to be a short chat before lights out when we are both exhausted. It is easier to just keep on keeping on. My own childhood was crap and I want to be the best mum I can for them so I am happy to hide my suffering
from them. I just want my husband more informed and onside. I think we need to take some time out sometime for a good chat but we are also busy at weekends with work and dealing with ailing parents so maybe we will have to throw a sick day together to work on our relationship. At the moment the only time I have to ‘be my own person’ is in the bath. Where I usually cry! Obviously alot of this explains why I got sick in the first place.

Basically I think there is a time for putting on a brave face and a time for being honest and I would like more time to be honest with my husband. I do value this outlet but I would rather he was my refuge. And if he gets worried and upset then so be it because I certainly would be on his behalf. Time for a talk.

Robert- none of my business but you do sound angry. You sure you don’t need more support yourself?

Thanks so much for all your advice. Putting down the ipad now to go and give my hubby a hug. X

Nubs - No not at all i am not angry :smiley:

Nubs,

It sounds as though you have a lot of demands on your time. I hope that maybe in understanding a little more, your husband may be able to allow you to have some ‘me’ time even if it’s for just 10 minutes extra a day.

You and I lead completely different lives, so I can’t pretend to know how it is. I just hope things manage to ‘click’ for you a little more in the coming future and subsequently ease.

Hope you’re managing to enjoy the Easter hols.

MMx

P.S Belfie- thank you SO much for that spoons analergy. Absolutely brilliant.

Nubs: I hope you don’t mind my saying so but some of your remarks seemed a bit concerning to me.
“I have to put on a brave face in front of my children and I have a teenager who stays awake later than I do so moments alone with my husband tend to be a short chat before lights out when we are both exhausted. It is easier to just keep on keeping on. My own childhood was crap and I want to be the best mum I can for them so I am happy to hide my suffering
from them. I just want my husband more informed and onside. I think we need to take some time out sometime for a good chat but we are also busy at weekends with work and dealing with ailing parents so maybe we will have to throw a sick day together to work on our relationship. At the moment the only time I have to ‘be my own person’ is in the bath. Where I usually cry! Obviously a lot of this explains why I got sick in the first place.”

You sound like you have a lot on your plate, with a huge workload, no time off at weekends, ailing parents & children to care for! With all these responsibilities it sounds as though you desperately need some time out & extra support if you’re not going to have a huge relapse! If you had a chronic condition like MS, Parkinson’s, etc. (which is obvious to other people) you would need to ask for your family’s help at times and, I’m sure, it would be given willingly. Maybe you could be doing them a disservice by not allowing them to be as much a part of your life as they are able to understand. My feeling is that you should be able to be “your own person” all the time - not pretending that you are a “supermum”. Isn’t that what marriage/partnership is all about?
Belfie
I loved the spoons analogy too - I continually run out of spoons as I always think I can do more than my body can cope with & end up paying! - Barb