Super Sensitivity & MS

Im not in the UK but I do live in a commonwealth country & have relatives & friends in the UK. There is a good reason why I’m using a forum in a different country. My wife of 40 years has had remitting relapsing MS for 32 years . She has numerous lesions & white matter disease in fact so much white matter its difficult to see all the lesions. Lately over the last few years she has become super sensitive to criticism , not that anyone is actually being critical but that is how she thinks. After every meeting with friends or family she tells me how they were critical of something. I cant even discuss a menu without her thinking im criticizing her. My daughters see it , my friends see it but I cant raise the issue or i will be critical. Im lost & im ready to walk away . Ive put up with lots of mental health issues over the years ( no MS in spinal cord) but this is the last straw . I cant discuss anything with her anymore. Don’t know what to do shes driving me away from her. I vowed to stick this thing out to the end but im lost really don’t know what to do . Any help appreciated.

Mike

hi mike

it must be awful for you.

all i can say is that you obviously love and care for her.

why not speak to someone (GP, counsellor) and see if they can help.

i’m the one with ms and i often feel that my husband and sons are critical of me.

i KNOW that sometimes they are but often it’s me feeling touchy.

ah well, i stuck by him when he had a melt down some years ago - swings and roundabouts.

good luck

carole x

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Hi, this is a sad story…if it is threatening to break up a long term marriage.

When someone becomes disabled, they can take a totally different view of life, other people and them selves. This isnt surprising…afterall life changes quite remarkedly once disability sets in. I am the disabled one in our house and rely very much on hubby and carers. I used to be so independent and very able to sort things out myself.

I am often the butt of their teasing, remarks and what seem like cruel jokes! I do stick up for myself, but it is so wearing , trying to keep on top of everything.

Have you thought about taking a break from each other? I take short breaks with my carers and my hubby gets a good rest from his caring duties.

I know we would not survive without these breaks.

Think about it and if you can, broach the subject with your wife…hope she doesn`t bite your head off. Do some research before telling her, eh?

pollx

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You sound rather lonely - not surprising if your spouse, with whom you have (I assume) been accustomed to keep familiar, comfortable company for decades despite the depredations of MS, has become a difficult person with whom you must be on your guard for fear of stumbling over invisible emotional trip-wires. I am very sorry that life has become so difficult.

It seems to me that those closest to us are sometimes least able to help at times like this. Is there are professional third party whose help you might recruit? It seems likely that your wife is suffering too, in ways that it is difficult or impossible for her to share with you. Perhaps a medical advisor, a counsellor even? Has your wife undergone any kind of assessment of her mental and cognitive state that would give clues as to how much of this is emotional distress talking (and that can leak out in every sort of unhelpful way, as I know all too well!) and how much (if anything) is a function of the actual damage to how her brain works that many years of MS has caused? I wish I had better ideas to offer you.

Alison

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So after 40 years you finally have had enough…

Why not walk in her shoes for one day. Just try it.

Sit down quietly, bottle of beer, and go back to how she used to be, before she got sick. 32 years is a long time sick. She probably is at the end of her rope.

Wake up every morning in pain, tired and confused, exhausted and fatigued. EVERYDAY. Feel good for five minutes and rejoice in the feeling, then WHAM something else hits you.

Lay awake in the night with your brain screaming, how can i do this anymore? No normality, having to be cared for, relying on people all the time.

Hide your car keys so you cant go out just see how it feels for one day to live the same life its mind blowing.

Your wife is lost. Scared, frightened, she doesn’t know how to feel or cope anymore, the last thing she needs right now is for her husband of 40 years to turn around and say, “your doing my head in, constantly going on about people criticising you, and this is the last straw, and i am walking away”… can you actually see what that would do too her. You have stayed for 40 years, didnt you realise that towards the end it would get harder for her… she needs you more now then ever.

Now is the time to call in family and friends and have a meeting about her welfare. She is in a bad place right now, you might not even notice it, as you have lived too closely.

She is scared and she is frightened. Talk to family and her doctor if you have too. Pay for her to have private councelling which will help her unload.

She needs support and family need to stop tip toeing around her, and be honest with her. If she blows, she blows, but egg shells break anyway and it sounds to me as if she is breaking and needs support to understand what is going on in her brain.

I think you BOTH need a break from each other. Go away for a few days, and just chill out. Its really hard to be with someone who is ill all the time.

She needs to understand she is upsetting you, stop protecting her. Tell her gently, if you have too.

My husband is really ill right now with COPD and getting over pneumonia. We have been together 24 years, and i am seeing him killing himself slowly with cigarettes, he has given up as he cant do what he used to do, and is dragging me down mentally. I have MS and i am HORRIBLE, no really… i have days i could scream and shout at him, and friends lol… its not funny but they tip toe around me all the time, think i am coping when i am not, and all I want is a CUDDLE. Reassurance … even normality, all they do is talk about my MS, and remind me how i cant do things… my sister doesnt she talks to me normally its bliss. I wake up in the morning and think god i wish i could just grab my car keys, handbag, get dressed and go out and do something normal, then i shake myself back to reality and realised, hell its just going to be another boring day, and if its not raining i might be able to take my dog out for a walk whilst i sit on my scooter…how hum…as I cant get away from him and his self pity lol.

Anyway i feel like walking away from my husband, there you go. He is driving me insane literally. Sits in his conservatory all day smoking. Doesnt help me in the house and gives me no love or support or reassurances. Its all about how he feels.

Full of self pity for how bad his life is… and he forgets mine is probably way worse, as i not only have to deal with my MS, but his COPD too… I should get a medal lol…

Life has no guarantees, every day is unknown. We dont know what will happen today, some will not make it until the end of the evening, and others will have found something wonderful, thats why i take each day as it comes.

You wife is lost. Your lost. So why dont you find each other again, give her a huge cuddle, love her for all the wonderful years you have had together, take her out who cares what she says, turn your ears off men usually are masters of that anyway, just enjoy what life you have left together, you stuck it this long, a few more years if your lucky with her, well its not much to put up with, and when you do finally part it will be on her terms and you will feel so much better and will be able to start a new life for yourself without the guilt.

Sorry i am rambling, but right now i know exactly where your wife is, and I know exactly how she feels. Just be there for her, and try and understand how hard it is for her. You sound a wonderful caring person, and yes it does get hard, in sickness and in health, but at least you have yours.

Hug, talk to each other, be honest with her, ask her is there anything you can do to make her feel better, if she blows she blows, then cuddle and her reassure her… but i think all the family need to be on this and yes you need to take more breaks from each other go do something normal for a change without feeling guilty. x

NB:

On another note, white matter disease can be a sign too of vascular dementia. She could be going through the stages of dementia, which changes a person. Have the doctors told her why she has so much white matter disease? Is there a reason it can be caused through tiny strokes, but whatever is the cause it will effect her cognivitely even if the MS doesnt.

I think she needs reevaluating, like i said it sounds to me, she is scared and confused, and this could be one of the causes of it. x

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Thanks for all the comments above all of them are graciously received. We need to start asking more questions from treating Doctors . Especially about the white matter disease. My wife needs to stop telling Doctors that she is ok when she is far from it. Her doctors wont put her on any medication because as they have explained to me they do not understand how she is still functioning at this level with so much disease & whatever she is doing just keep doing it. Im over my crisis point that led me to start this thread . I will never walk away from her although at times I am extremely challenged. Its a difficult life living with MS but its never boring.

Mike

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She sounds a very strong women, a bit like me lol, a leo. I have an amazing pain threshold.

I would think her issues are with her white matter to be honest. It can change people. Your a good husband we all need to vent and rant at times, it does us good. x

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Phew! That reply from Crazy Chick had me in tears!!!

I recognise so much of how she describes herself in me.

Oh if only, if only, I could wake up one day and say to my hubby, Im just popping to the shops. Want owt? then grab the car keys and off Id go.

Instead my life and days out have to be pre-arranged and detailed down to the very last pad, wipe and wee bag!!!

Mike, Im glad venting here has given you what you needed....a vent...just that and someone elses point of view to give you the strength to fight on…bless you…we all need someone like you, I know I do!

Bless you too, Crazy Chick!

pollx

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Hi, Well said Crazy Chick and Poll.

Mike, I suspect I drive my husband up the wall too - I don’t mean to. He accuses me of sniping constantly at him. Reality is everything hurts and is tiring. For example, if he doesn’t hear me the first time I say something, I have to say it again - that takes energy which I do not have spare to give. My tone of voice changes and it sounds like I am nagging or sniping. Somehow he puts up with me, or has so far.

I hope the medical experts/doctors can help both of you, Mike.

Gill

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I took some good advice from above & we have headed off on our yacht for a few days . While the problems are still there we have discussed them & understand that they are the symptoms of the disease not symptoms of a failed relationship. We will continue to work at it . In the meantime im enjoying her company sailing immensely even if she is a bit slow on deck.

Mike.

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Good…or are you just showing off that you’ve got a yacht? Or is it a sailing dingy?

My bank holiday was good …spent it in bed…no, by myself while hubby sorted out his mancave!

Pollx

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Hi Mike,

So glad you got to grips with your crisis…got to tell you that I agree with all the comments offered.

I do think it very important that you and your wife can talk openly about your everyday issues/ worries/health to a professional… how about making an app just for you with the doctor your wife see,s and explain that you disagree with her saying she is ok and why.

That would be a start … we are often guilty of saying we are fine a,because we want to be fine b, because others want us to be fine. With our doctors we need to be truthful.

I often reply " I,m fine thanks how are you ? " I am never fine which impacts on my hubby.

Glad you realised you are not about to chuck in the towel and it,s fantastic you can get out on the boat…now I am green with envy. We bought a lovely little sailboat ( a Snapdragon ) a few years ago as our retirement treat /project…sadly I am completely unable to even get onboard unless hubby fixes a bosun seat to the boom and hoists me onboard.

Our much loved sailboat has been landlocked to long so maybe we need to sell her…that will be hard as it is admitting I too am landlocked.

So enjoy every moment possible but do get some medical folk onboard too so that when inevitably you feel overwhelmed gain you can call on someone who already has a heads up on your situation.

Good luck and happy sailing days.

Ell

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Ell, do you reckon Mike’s boat will be big enough to get those medical people on board!!! Just being daft now!!

I thought i was landlocked too, till I tried a mini cruise and found it was just what suited me fine! They are fantastic for people who have wheels instead of feet like me!!

Pollx

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I got my Yachtmaster qualification in 1993 and I got my MS about ten years later. I wasn’t going to let that stop me getting my saltwater fix.

There’s an organisation called the Jubilee Trust. They have two tall ships especially build to be crewed by people with disabilities, Tenacious and the Lord Nelson. I must book another trip. Soon.

I love showing off my ship-handling skills to people without disabilities.

yo-ho-ho

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Sailing seems to be good physio for MS it seems to improve my wife’s balance after a couple of days. But i do worry about her & she stays in the cockpit if its lumpy. We had a great few days away , pity i cant post a pic or a video of the whales we saw.

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I am so glad you went away, you said you lived abroad somewhere. Just doing that is such a boost for both of you. The trouble with someone ill with a chronic illness both partners seem to put themselves in the same jail. But really there is no reason you cant do it more often.

Talking is cheap it costs nothing, just effort but its worth it. I would have loved to see the photos. I love the sea, used to swim like a dolphin.

Anyway glad you are feeling a little better about things.

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OMG Gill thats me. My husband drives me mad. He said he cant hear me, simply because he has his face towards the T.V. all the time, i hate it when somone doesnt look at you when the are being spoken too.

I get fed up of repeating myself, it got so bad i thought perhaps i was speaking a new language or something lol.

Decided maybe its just a man thing, they just tune us out.

I did tell my pain specialist doctor i do get angry a lot now i never used too, and its frustration and fatigue, having to repeat myself over and over when the conversation was just mundane anyway is a nightmare lol…

You know i think a lot of women without MS experience this with long term relationships lol. xxxx

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Hi Mike,

That reminds me. I’ve never had any trouble in finding my sea legs but since I’ve had MS symptoms my balance on deck is even better than on dry land! Perhaps MS should stand for Marine Spirit?

Any physio is good for MS, but sailing is Fun physio.

Anthony

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I like your suggestion for a new meaning to the letter MS Anthony!

What about re-naming my HSP?

High Spirited Polly?

xxxx

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You’ve got it honeybunch!

It’s disease so you can call it anything you like.

A.

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