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I dont want MS to end our marriage

Hi everyone, I am new to this site (although not to MS) and would really appreciate other peoples thoughts and advice. My husband was diagnosed with MS back in 2009, just after our first son was born. We are a young couple, im 29 and he is 39. As upsetting as the diagnosis was, we thought we were strong and given everything else that has happened since we have been together from 2005, there was nothing that could tear us apart. I am also a community care worker and have cared for many service users with varying degrees of MS. My husband has tried two different DMD’s - Copaxone injections and two years On Tysabri, however when he came back JC Positive, they ceased the Tysabri treatment as it was having very little effect, although he unfortunately did suffer from the Tysabri rebound effect which he has always feared would happen. His mobility, although decreasing, has not stopped us having fun and trying to make the best out of life. I love him so much but over the last few months his personality has changed without warning. I dont recognise the man i see before me, he is always angry, short tempered, forgetful, disorientated, snappy and ready to argue. I tried to talk to him about this, but he says it is in my head and there is nothing wrong. Although it was hard to hear i was relieved when our second sons preschool teacher pulled me to one side one day and asked if my husband was ok as she had noticed alot of changes in him pyschologically lately - so it isnt just me!. I spoke to my husband again and we spoke to our Ms nurses who sent him for a neuro psychological assessment which concluded that his cognitive functions and abilities were being severely compromised by his Ms, I had heard this could happen but I also heard it was quite rare so i didnt prepare myself for this. They have suggested and are going to refer him for counselling as the assessor doesnt believe he has come to terms and accepted his diagnosis - and even though that diagnosis was 5 years ago - i do agree with her. I dont know what to do for the best, I am so tired of the arguments and feeling like i am walking on eggshells around him, i never know how he is going to react anymore - he is so unpredictable. I am still so in love with the man i married and the man i shared my life with but i dont know the man of the last 6 months - but these changes in him are driving us apart. My 5 year old has even noticed that Daddy is cross all the time now. It is heartbreaking, i dont want to fail him and i dont want to be without him, everyone always comments on how strong we are and if we ‘cant make it - no one can’. He gets so angry over tiny things, flares up at me and then five minutes later is telling me how much he loves me and needs me. Nothing i do seems to be good enough or right anymore and i dont whether he would be happier without me now. Im wondering if anyone has or is experiencing anything similar and what did you do? Are these personality changes here to stay? Is there anything else we can try to help us? Our neurologist - who we are in the process of changing because he is so awful - in regards to his neuropsychological assessment just said ‘oh well - what do you expect, nothing can be done’ :frowning: Thankyou so much to anyone who has taken the time to read my waffling , i feel slightly better just for writing it all down xxx

Sorry to read of your personal termoil regarding your husbands MS. Mood swings are the norm from my point of view. All I can say is, worrying about finances, raising children & whatever carreer is at stake. All this says to me is you guys need a holiday. We all do. Your unit is just as important as the MS treatment. If the unit breaks the MS wont become easier. Laughter & good times help in so many ways. It is distraction, but that which could help. Enjoying the things we want to do in life is fun for all. Avoiding stress & letting treatments work. Being happy with the neurological care is all part of the bigger picture. Enjoying life sooner, rather than later & the strength will be greater. Anything that promotes health. like diet, fitness & laughing. This applies to all conditions & all life. Be happy & have fun. Jump on them bikes & go to an uncomercial festival. Food fight. :slight_smile:

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Thankyou for your kind words - i totally agree with what you are saying and have the same outlook on life that you do. My husbands spark for life and our marriage seems to have somewhat died lately and i need to find a way to sort this - i really dont want to lose him xx

All the treatments & worry will divert your true emotions. To have a great marriage & involve the children will need fun.

Start talking about what is truely important. I know a man who drove his family away because of his illness. He drank himself to an early grave to save the feelings of his loved ones. He stopped all his medication, closed himself off from the world & died alone.

Happy times NOW or the alternative. That is the cold hard truth.

They could find a cure soon. The MSS is plowing all their efforts into such things. All this work bisiness & pretending things can be the same is history. Be strong & forceful to be truely happy. Enjoy what you your unit has created. The cure is life itself. I hope you all gel & have fun.

All I hear outside is, I’m smarter, I have more money, I have more friends, I am more healthy, my illness is worse.

What you do have is each other & 2 children. You will have family too & your social group. Sounds like the recipy for a party.

Hi Kelly, your`s is a terribly sad story…but I believe there is hope on the horizon for you…the counselling and perhaps CBT will help and slowly, your hubby may become the man he was. Push for an early appointment if you can.

Yes, some people would think 5 years after diagnosis, is long enough to accept the situation.

BUT no, that isn`t always the case. If the diagnosis was given abruptly and the ensuing time wasnt dealt with sensitively by the medical bods, then that can spell trouble in itself.

In our house, I am the poorly one and my hubby looks after me almost 24/7…we do have outside help for 16 hours week, plus 1 sleepover.

Having a chronic condition in a household, despite whichever partner has it, takes a helluva lot of dealing with. It is constant, non-sparing, tiring, nagging and a whole host of other awful things too.

But when it seems like the 2 of you are being forced apart by something you cant fight, then its no wonder you feel you are losing the battle. My description is how i have sometimes felt. I have felt a burden, a nuisance, a pest.

Finally I will say that whever I see a couple, where the man is being pushed in a wheelchair by the woman, I feel it must be worse, as it is traditionally the male who is the providor, the protector, the strong one. This has to have a negative affect on that man.

I`ll shut up now, hoping that things improve for you all.

luv Pollx

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Hiya Poll

Hey, that’s me a ‘male wheelie’ pused by a woman. Still it’s … que sera sera… what ever will be will be…

Marty

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Hi Marty, hope my words havent upset you…honestly didnt mean any offence hun.

pollx

Hiya again Poll

Nope. Never offended and I love it! Having a woman doing the driving. It’s great!

Marty

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sounds luvly hun!

pollx

Hello Kelly I know how you must feel,in my relationship it’s me who as the MS and I went through the same feeling down snappy ,my doctor sent me for counselling and it worked for me ,I am still on anti depressants but the course they put me on called Beating the Blues really helped. My other half Theresa is my saviour she pulls me back up when I am down and puts a smile on my face even though I know it’s hard for her So keep your chin up things will get better Steve

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Hi Kelly

With MS, it is usually the case , where do I start to tell my story. You have started telling yours and I can see how it hurts. I am the one with MS and it has been getting progressively worse for 28 years. Your husband is annoyed because he can no longer do the things which every man in his house wants to do but now has to rely on you. Simple things like changing a light bulb which I had to stop doing more than 15 years ago. Your husband sees you doing things which he should be doing and that is hurting him. Try to let him do little things that boost his morale. I used an electric drill yesterday to drill holes in a wall whilst sitting in my wheelchair and I felt a sense of achievement( my wife still can’t use an electric drill; bless her!) I get angry because I can’t do things and your husband might be feeling likewise but I recognise now, I am disabled, and have to change my life accordingly. Maybe your husband is in denial and does not want to be considered DISABLED as I did for many years but once one accepts the limitations it opens up new possibilities and I now know what I CAN DO. I drive my own adapted car for example and I use a an electric scooter to get about outside.

Sorry if this reply is more about me than your position but if you hear my story and others, you and your husband might not feel so alone. It’s good to talk! I know how you are feeling because my wife tells me she feels like she is walking on eggshells and I am starting to keep calm in stressful situations and accept that not everybody is going to get things right.

Dont panic Mr Mannering should be the MS motto.

Don’t give in. You abviously love your husband

Patrick

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My husband suffered with MS which affected his frontal lobe and changed his behaviour completely. He was moody, argumentative, verbally aggressive, and at times physically aggressive (the verbal and the physical aimed at me and our son). My husband died Dec 2012 - and my kids were just 5 and 8 then. Please try and explain to your children that it is their dad’s illness which makes him behave like this. That is really important. Unfortunately we did not find a way to “cure” Steve of the mental problems - we just muddled along! Steve’s behaviour was “punished” by us not going in his room (unless essential) when he started shouting - that was to protect us from the physical violence that it usually escalated to. On a few occasions we resorted to the police who would come and “tell him off”, which would almost shock him into normality again (the police were very good to us and understood the situation perfectly). My husband would also deny anything was wrong - it was always my fault! He was also delerious and paranoid at times (and not just when he had an infection). We once had 48 hours where he was convinced someone had relocated him, his bed, and whole bedroom to the South Coast whilst he was asleep! It will not be an easy journey for you or your children - but keep instilling on them that this is NOT who their dad really is, it’s his illness that makes him like this x

Hi Kelly, my situation is quite similar to yours. My hubby was diagnosed at 31, just after our little one was born (6 months old). We were totally devastated but very much “together” on facing it and supporting each other. It seemed so unfair, our lives together were just starting and suddenly we were propelled into roles we just weren’t prepared for - I really had to push him to apply for the disabled badge etc as he was not at all have with this “label” but yet he could hardly walk or do anything physical. His personality began to change. He became very cynical and nasty. Critical but also martyred - I couldn’t do anything right. Either I wasn’t being understanding enough or I was patronising him. We went to counselling - it was either that or our marriage was over. It helped us be open about our personal experience and outlook and helped address a few issues. Above all it allowed him to see that he wasn’t alone, that I didn’t resent him (I had no idea he felt this way). He realised that I was suffering in my own way with added responsibilities and a sudden lack of the physical presence he had been (“man” stuff like other posters have mentioned). I agree that 5 years is not really enough time for it to sink in fully - for us that was our darkest hour, like we’d been putting on a brave face that finally collapsed under the weight of reality. Best of luck xxxx

Hi Kelly, my situation is quite similar to yours. My hubby was diagnosed at 31, just after our little one was born (6 months old). We were totally devastated but very much “together” on facing it and supporting each other. It seemed so unfair, our lives together were just starting and suddenly we were propelled into roles we just weren’t prepared for - I really had to push him to apply for the disabled badge etc as he was not at all have with this “label” but yet he could hardly walk or do anything physical. His personality began to change. He became very cynical and nasty. Critical but also martyred - I couldn’t do anything right. Either I wasn’t being understanding enough or I was patronising him. We went to counselling - it was either that or our marriage was over. It helped us be open about our personal experience and outlook and helped address a few issues. Above all it allowed him to see that he wasn’t alone, that I didn’t resent him (I had no idea he felt this way). He realised that I was suffering in my own way with added responsibilities and a sudden lack of the physical presence he had been (“man” stuff like other posters have mentioned). I agree that 5 years is not really enough time for it to sink in fully - for us that was our darkest hour, like we’d been putting on a brave face that finally collapsed under the weight of reality. Best of luck xxxx

Dear Kelly,

Reading your situation brought tears to my eyes… first might I say what a wonderful person you are for supporting your husband and for maintaining you family unit. I think you are doing your up most best with the resources and will that you have. But it is okay … to say im struggling and admitting that you are on here is the first big step. Your children and husband are both very lucky to have been blessed with what seems to be an extremely stoical woman in their lives.

I agree with many of the other comments given in response to you. Ideally an appt sooner rather then months later would be beneficial but as you well know … needing and getting are 2 quite different things. I have Relapsing Remitting MS and I was given an official (confirmed) diagnosis from the neuro consultant in January.

And wow … Do I feel like my mind is on an emotional roller coaster… I too get short tempered, or feel inside myself extremely angry and cant explain why. I get annoyed with myself mainly and wonder if this is perhaps how your husband feels inside. I feel like I should just get on with my life, and not let MS over take me but this is easier said then done. I feel quilty that my family are having to support me as often as they do. As im a single parent with a two year old son and am going through a divorce at the moment.

If im not feeling angry, guilty that I cant do more with my son… I feel tearful. But the face hides so much beneath a deep thinking brain … I often smile, and laugh and to the outside world I am ‘such a happy lady’ … beneath that lyes alot more.

I feel for both you and your husband, but all I can say is persevere. This MS Forum is sometimes the sanctury we all need.

Wishing you and your family the best of luck for the future.

Dear Kelly,

Reading your situation brought tears to my eyes… first might I say what a wonderful person you are for supporting your husband and for maintaining you family unit. I think you are doing your up most best with the resources and will that you have. But it is okay … to say im struggling and admitting that you are on here is the first big step. Your children and husband are both very lucky to have been blessed with what seems to be an extremely stoical woman in their lives.

I agree with many of the other comments given in response to you. Ideally an appt sooner rather then months later would be beneficial but as you well know … needing and getting are 2 quite different things. I have Relapsing Remitting MS and I was given an official (confirmed) diagnosis from the neuro consultant in January.

And wow … Do I feel like my mind is on an emotional roller coaster… I too get short tempered, or feel inside myself extremely angry and cant explain why. I get annoyed with myself mainly and wonder if this is perhaps how your husband feels inside. I feel like I should just get on with my life, and not let MS over take me but this is easier said then done. I feel quilty that my family are having to support me as often as they do. As im a single parent with a two year old son and am going through a divorce at the moment.

If im not feeling angry, guilty that I cant do more with my son… I feel tearful. But the face hides so much beneath a deep thinking brain … I often smile, and laugh and to the outside world I am ‘such a happy lady’ … beneath that lyes alot more.

I feel for both you and your husband, but all I can say is persevere. This MS Forum is sometimes the sanctury we all need.

Wishing you and your family the best of luck for the future.

Hi Everyone

I am new to the site and this is my first posting. I’ve just read Kelly’s post and the reponses from others.To be honest I’m sat here in tears as at last I feel that there are other people who REALLY understand how hard life can be with MS.

My husband was diagnosed nearly two years ago with progressive MS at the age of 42. He had his own business and we have two young children. Amongst his symptoms, one of his main problems was his memory and character and it took alot of pushing by myself to get an MRI scan through our GP. Since his diagnosis we have had to close his business and he is no longer able to drive due to his cognitive problems. I am more than aware of how hard all of this has hit him but it has been equally hard on myself and our children. Over the last 12mths he has become very similar to how Kelly describes her husband and is hardly recognisable as the man I fell in love with 15 years ago, in fact her description is identical to that of my husband! I feel like I’ve hit a brick wall as nothing I say or do is right. Tests have confirmed that his MS is to blame for a large proportion of way he acts and behaves (basically the ‘switch’ that stops us saying or behaving in certain ways is no longer functioning properly). A consultant has advised that counciling will not work due to my husbands cognitive problems, …so where do I go from here?

He has declined dramatically over the last few months and it feels like there is no help available. At present his life revolves around food i.e. breakfasts and meals out and lots of junk but very little else. I do well to get him to his appointments never mind any other activity (yes he is on anti-depressants). In the meantime my life revolves around work, looking after the children & home and trying to care for my husband. I’m exhausted from trying to keep all the balls up in the air but the arguments and trying to help my children understand why dad is behaving like he is is proving even harder.

Any advise/ideas would be greatly received x

Kelly, Jess I am sorry for your situations but your messages have made me feel not so alone. I am in a similar situation with a young family living with my partner who has mood swings for days at a time, then goes back the man I love and is full of remorse. It is so difficult to forget and am really struggling to work out how to cope with his moods and how to maintain things for the children. When times are bad I worry that I am being a bad mum by allowing the kids to be part of such a stressful home. He is doing cbt which is helping a bit but I think it’s damage rather depression. If anyone has any ideas or tips to cope I would love to hear them! Despite my constant thinking I never seem to come up with a solution xx

Hi, I don’t know hold your children are?? My children were 4(turning 5) and 7(turning 8) when Steve’s behaviour was at its worst. If he behaved badly to the children I would treat him as normal, and tell him that wasn’t the right thing to do. Sadly, he was unable to rationalise his behaviour at all so even if I pointed it out he would argue that it was perfectly normal to behave like that. His behaviour was worst when he was over-tired, so my little one missed the worst of the episodes as she would be in bed. With my eldest I repeatedly explained that it wasn’t dad behaving like that, it was the MS - but he was still to come and tell me if dad behaved in a way he thought was bad. It was hard, and my eldest suffered a lot of anger-problems - he couldn’t fully accept it was the MS that made Steve like that (and even now, at 10, has ony just recently accepted it, and his anger seems to have subsided). It’s not an easy situation - just try and be honest with your kids. My eldest felt very rejected by his dad, so also instill on them that their dad still loves them - and that you love them.

Patrick what a lovely ‘honest’ reply. I’ve just added myself on here as I am starting a campaign to raise more money to multiple sclerosis. My dad has progressive multiple sclerosis and he is in a wheelchair now, he also gets very stressed sometimes, well more frustrated that he cannot do things he used to do. He used to be called ‘quick nick’ at work and now he is in a wheelchair,he also built halve of his house, so not being able to do things can be frustrating. You should like my facebook page ‘raising awareness for multiple sclerosis and brain tumour research’. My mum is my dad’s full time carer which is not easy for either of them, the reason why I am raising money for the other charity is because we lost a dear family friend (and my mums best friend) to a brain tumour, she was only 44. I feel it is my job to try and raise awareness to raise more funds to try and find a cure for both of these charity’s. Is anyone local to wiltshire? Hope to hear from you. Thank you. Steph

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