Hi This is my first time using a forum so please bear with me if I inadvertently do something wrong. 15 years ago my husband experienced some symptoms of MS - to cut a long story short he was told he had a virus in his central nervous system and the results of a MRI indicated that he didn’t have MS “yet”. My husband brushed it off but the “yet” always stuck in my mind. He had a horrific accident that nearly killed him 7 years ago and then a very serious bone infection that could also have killed him nearly 3 years ago. He has a lot of limitations due to the injuries from the accident. Everything took so long to heal and he faces, at only 38, countless more surgeries. Then last summer he started getting tingling in his hands, after tests for B12 deficiency and nerve conduction tests proved nothing he had an MRI 3 days before Christmas. He was called again for another one “with contrast” (dye) on 10th of January and on 15th January he was diagnosed with RRMS. The first MRI 14+ years ago showed one lesion - he now has over a dozen in his brain and a large one on his neck. At first we were both relieved as it explained a lot of things that we were noticing. He has started capaxone (I’m sure I’ve spelt that wrong) injections. Fatigue is a major part of his symptoms at the minute. The tingling in his hands isn’t just as bad, neither is the double vision. What I am finding very hard to cope with however, is his mood swings. I suffer from fibromyalgia, arthritis and depression myself. The change in his mood at times is like flicking a switch…sometimes he is himself and within a second he could be shouting his head off. I feel I am walking on eggshells around him. At times nothing I say is right and although I know deep down he loves me, his words can be quite hurtful. He can loose his temper quite quickly with our children (16 and nearly 14) they know he doesn’t mean it but it is upsetting for them too. He NEVER has lifted his hand or anything like that to me or the children. Technically speaking I know this is a page for MS sufferers but I was just wondering if anybody had anything similar happening to them within a relationship. I have been incredibly long winded in this post but I wanted to give whoever reads this a full insight into my life in order that maybe, hopefully someone would have any idea of what I should do. If you have read this far down this post - thank you for taking the time- I know it’s very long Xxx
Just realised that I have the thread as “moos” swings !!! I can assure you all he is not a cow and just the fact that once again I can’t sleep and my typing is a bit off…sorry
Have changed to anon.
This is also my first time using the site. I was diagnosed with MS in March this year am due new MRI in next couple of weeks to decide which form of the illness I have.
We ( my huband & me) have just got back from Tunisia, a holiday I booked before I became ill!! & my husband was wonderful the way he cared for me. But I am constantly apologising for having this illness & feel so guilty that he now is caring for me when we should be enjoying our lives. I feel that I am a burdon. I sound such a misery SORRY but am so confused.
Only being diagnosed recently I am still coming to terms with all that comes with this illness.
I would like to say a very BIG thank you to all of you wonderful carers out there THANK YOU
Hi Purple Pixie I am in a similar position as you. My husband was diagnosed with MS 4 years ago. Before he was diagnosed he started having mood swings and personality changes so bad that we almost divorced. But then he had a major attack and that’s when we found out it was MS. We too were relieved to know what was causing his behavior changes but it still hasn’t been easy. He never screams and has never raised a hand to me or our daughter but his words are hurtful. I do the eggshell walking as well and still he takes offense or gets upset with something I say or do daily. It’s getting tiring. I keep telling myself this isn’t him, it’s who he’s become because of the disease but that doesn’t make it easier. I wish I could offer you some advice but I think we are in the same boat right now. I’m thinking of asking him to get help, maybe not seeing a therapist but just reading forums such as this one and articles that talk about the emotional changes might help him see that it’s him and not me. I’m still considering though. He gets upset with so much that I say. I wish you well on this journey. I hope we can persevere like so many other couples who’ve dealt with MS.
Thank you all for your input
Anon - i will post on the everyday living part and see what advice there is there.
Joanne - you don’t sound a misery - I am so glad you went ahead with your holiday and so pleased at how your husband has been so caring. I think it is a journey not only for the MS sufferer and the carer as well and something we need to adjust to at different times. I was always a planner but this disease as shown me that we just have to live a day at a time. You have absolutely nothing to fel guilty about - you didnt give yourself this illness. As for enjoying yourselves - that doesnt have to stop. My husband and I took a short break at the eginning of this week although we came home on Wednesday a little earlier than planned it was lovely. We have 2 teenage children (my mum looked after them) and we did have a good couple of days. Stop blaming yourself. I know its hard but try.
Happy Star - I empathise with you sooooo much. It does get tiring and stressful but I just keep trying to do my best. And i also agree that this disease has made my husand this way at times. But then there are the times when he is the man i married nearly 18 years ago and everything could be ok again for a while. I think trying to let it wash off me whenhe has a mood swing is what i ultimately hope to do, but as i suffer from depression and low self esteem as it is, its really tough going at times. Since my husband was diagnosed people are only to happy to tell me about the amount of marriages, of people they know, have ended in divorce because the carer couldnt cope anymore. I don’t want that - i love my husband so much and we have already been through so much. I was so encouraged by the last line of your post and hope like you we can perservere. Thank you
Thank you all for taking the time to reply to my post - best wishes to you all
things are getting worse. There is hardly ever a day now that I am not emotionally abused by my husband and yet I do still love him.
Our daughter has had a lot to cope with the last few years and even though she is a teenager she still likes to cuddle up to me on the sofa in the evenings - we both got yelled at 2 days ago. He told her she was too old for a cuddle and that I was babying her all the time. She was bullied and we had to change schools and the only reassuring thing to her was that cuddle at the end of each day - full scale verbal fight broke out about the way he was raised and the way I was raised etc. I told him to get out and he went to bed. Of course me being me couldn’t let it lie and I went upstairs after him. I final got him to realise why having a cuddle meant so much to our daughter after much crying from me and more giving off from him.
the phone rang this evening. Only 2 people who phone us and “withheld” comes up on caller display is his mum or my dad. He had the phone but started passing it to me. I asked him just to answer it as it might be his mum. He said it wouldn’t be and that if he answered the phone and it was for me he would just hang up! He has been so nasty lately. He’ll tell me to “shut the **** up”, he’ll sit with earphones in on his tablet and not talk for a few hours and then it’s just foul form and being shouted at all over again. He refuses to see anyone. Says there is nothing wrong. He forgets easily…about some things but seems to remember what he wants. No matter what I do it’s wrong.
i have been very I’ll myself and while he is technically in “remission” he refuses to help me. I am now on morphine for the pain I am in but I don’t count.
i have been having a very hard time with 2 people in my family who would have ordinarily been my main strength - but I don’t have that any more. I have no one else to turn to. I try to keep things played down for the children’s sake but they are old enough to know what’s going on…especially our daughter(even though she is younger than her brother) She is the only one who keeps me sane. I would never of course tell her that, she’s only 14 and that would far too much pressure for her.
I am attending the pain clinic in the morning for myself but as I am overweight I am pretty sure it will be “lose weight and we’ll treat you then” sort of thing. He doesn’t seem to care at all.
he sees his MS nurse on Thursday and while I want to bring it up I am scared to. Do I speak to her in front of him - will she talk to me without him there (as he is the patient not me)?
We have been together since we were 16. That’s 22 years now and never until the last year or so did I EVER think we would break up. But I don’t know how much more I can cope with. But I love him still…so very very much. I am at my wits end to know what to do.
as usual I have rambled on far too much - sorry
i am very grateful to anyone who takes the time to read this
any and all advice would be greatly appreciated
Dear Anonymous(es) and Purple Pixie,
My boyfriend was just diagnosed a few weeks ago and is receiving no treatment yet (seeing the MS Specialist on Jan 14). We’ve always had quite a passionate relationship so it wasn’t unusual for us to argue; but lately the nature of the arguments was not normal, something was definitely amiss; it wasn’t him; he wasn’t himself; and what I read above is very helpful. It will help me stay strong for the both of us. I also for the first time feel like I need to wak on eggshells which is uncomfortable for someone feisty like me. I can’t wait for any form of treatment to start; I hope there is something the specialist can give him to cope with the physical disability, double vision which causes him imbalance and the mood swings. I wish he could get back to normal sooner rather than later.
What I’ve learned from the above, and that I am grateful to this forum, is:
- Remember that he loves me. It’s the condition getting the best of him, not a lack of love. I think I can tap strength from this to see him through those phases.
- Realise that he could be depressed - of course, who wouldn’t be to abruptly find yourself from a healthy, happy-go-lucky, hard working young man (34) to being almost disabled with an eye patch; that will remind me to love him more not berate him or get dragged into arguments about things we wouldn’t normally argue about.
I do have some questions still, which I hope you can help me with:
- Does treatment help? I wish he had been seen by now, can’t believe he has to wait 3 whole weeks from diagnosis to appointment; it feels interminable.
- How long do the relapse last and how frequent are they? I know it says here that it’s different for everyone, but what is your experience?
- except to love him, be patient and stay strong (That’s going to be challenging, especially the patience lol) - is there anything else I can do to help him get better?
This is proving to be a real test of strength for me - It saddens me deeply to see him like that. It also worries me for the future we have planned togheter. I thought MS was only disabling and I could cope with that but I find myself stumbling on the emotional front.
I am in a similar situation, and I wanted to ask people not only how they cope with the mood swings & hurtful things that can be said, but also advice - my husband also flicks like a switch from being happy, to horrendous. One minute I feel like the most loved person in the world, but the next either invisible, he ignores me, I’m just like a house elf(!) or like I have done something really bad & he is punishing me, or telling me how vile I am to him, or how angry I make him, or make him feel like nothing, or that he doesn’t know why he is with me, or I should go & be with someone else because I’d be happier - which is so far from the truth it’s silly.
He seems to not recognise what he is saying, & I know most of the time he doesn’t realise that the things he says hurt me, but I don’t know how he can seem to not even recall saying them sometimes. Is this normal? Or is it that he doesn’t want to think that he’s hurt me? I really don’t know, & we can’t talk about it because that just makes him cross for real.
I do apologise for asking advice on the back of your post - I have read through what you wrote as well as some of the replies & they brought me to tears because I feel so much of what people have added. I opened a profile on this about a year ago but haven’t used it really until now because my husband has recently been suffering with blurred vision, and has lost sensation in one leg; in that he can’t feel if you scratch his skin, & can’t feel the cold of an ice cube for example. I think he is scared too, but he has not yet seen his doctor - he is a very stubborn man & doesn’t want to be told bad news because knowing him it would make him feel like he is failing. It doesn’t matter how much I tell him otherwise, that is just how he sees it.
Sorry also for waffling on, I would appreciate anything that I am told, & am desparately trying to find a way to be stronger & better for him.
Back to being ignored today, then told I’m a bitch because I got upset. Great evening!
I empathise with you completely. I work as a personal assistant to a gent with m.s. Lately hes become verbally abusive shouting not letting you tell him the truth about things when hes eating one type of soup which he shouts at you is a different thing altogether is hard to cope with. He swears a lot and accuses staff of theft etc. Im learning to not bother disagreeing with him anymore but to be quite and just agree. Its hard to ignore and must be so much worse for you taking abuse from your husband. I too like you have fibromyalgia but put my employers needs before my own. You need to learn to walk away from the situation for a few mins to compose yourself and remember its not his usual way of talking to you but its the result of his condition. I cant imagine how it affects you but can only advise that talking about it will help you get it off your chest.
Im hoping this forum will help me to cope with the verbal abuse us carers have to go through each day.
I know you wrote this some time ago, but I can so relate to this. My partner has MS and her mood swings, depression can be
just like you said at the flick of a switch. Sometimes sharing a problem helps. How to deal with it? I just dont know?
Know how you feel.
My husband has the same mood swings. He is in a care facility and will call me and become verbally abusive. He also is allowed to come home on occasion and does the same thing A person recently gave me some advice and that was to just tell him that I wasn’t going to listen to him when he gets like that and that I was hanging up on him when he becomes verbally abusive over the phone. The next thing was if it happens in person to just tell him that I was leaving the room and leave him on his own for a while and that I’ll be back when he calms down. If possible, go outside or go for a short ride in the car. I have tried a couple of these things and it does work.
it sounds to me like having a new toddler in the house. my eldest used to throw himself to the ground in a tantrum. after 3 visits to A & E i was told that his repeated head injuries were flagging up concerns about his safety. that really hurt me. so following that every time a tantrum kicked off i’d tell him to sit on the floor, wherever we were, in a store or on the street. he always calmed down eventually but it was the fact that i had remained calm that really helped me. so the advice of removing yourself from the situation is excellent.
All this sounds very familiar. It’s so tough and to say it impacts on all aspects of life totally underestimaes the reality of living with MS.I totally relate to your situation. My husband was only diagnosed 12 years ago at the age of 51 after a serious episodic of optic neuritous when he list 90% if vision in his left eye. This was at the end of years of what I thought was dealing with severe stress and resulting in poor mental health. My thoughts about MS are that the symptoms are similar to borderline personality disorder. Difficult to say which came first personality or MS! My advice is to have a support system around you. Family, work colleagues and try to have an outlet…I’m lucky as I have 3 grown up sons who all have lovely partners and I have grandchildren to care and love. Little thought is given by my husband towards my emotional needs. He is difficult, and lime you, nothing I say or do is right. I tell myself it’s not me or him but the disease. But I cannot deny life is a struggle. My husband regularly drinks and on the evenings he obtains he goes to bed at 6.30 and in any event is in bed by 7.3ppm. Yes it’s rubbish, unfair and although I don’t have MS I guess he didn’t ask for it either. I do believe people are predisposed to have MS. Everything we have accessed to support and help has made little difference. If you Can leave him - do it now. It’s unlikely to improve!if you can’t then you have to adopt an attitude of acceptance. Acceptance that life will never be normal, I wish my experience could offer you some hope, try and live in the moment, and do not let him make you believe that your life isn’t important. The same is true for your children.
I’ve been ill a few times and can relate to him being moody. He is not angry at you he is angry at the illness. Youbmust be so busy but try to get him to talk about how he feels about all the changes. It really hard to suddenly having to start relying on people when before you were independent. He needs something to let it out. And tablets don’t hwlp!! Maybe a scribbling book or just some quiet meditating a.k.a doing nothing.
Hi, my husband has ppms and he has had it for over 16 years. The last 5 years have been the worst and just recently he has become unbearable. This seems really mean of me to say but I am really struggling to stay in the marriage due to not being able to cope with the nastyness and unforgiving behaviour. I work full time and he has finally excepted help from carers and social workers. I feel i am heading for a divorce and sell up and run. We have a fairly big house with a large garden and suffice to say it is falling down round our ears. He has slept in the living room on the settee for over 3 years and my living room is no longer a living room. He wont accept a stair lift or will he accept or consider moving to a bungalow or flat. I really am at my wicks end and would love something even nice said to me or any kind of love shown. what should i do ?
I’d be interested to hear from any male partners of Ms suffers to know if their partners treat them in this way. Or is this behaviour a Male ms sufferer issue. 0Like you Shelly I unfortunately have a similar relationship with my husband who has SPMS. He is v difficult to live with, won’t engage in any help or seek support at the local MS centre. Uses alcohol to self medicate. Is argumentative and like you I’m on the brink of walking away after nearly 39 years. Only the last 12 living with MS. The only thing that is currently stopping me is I know I’d still be and feel responsible for him. Not sure there are any answers. But like you I’m lonely and would love to have something nice said to me, to be appreciated for everything I do and most of all respected.
Thank you for your reply, I was glad to hear that i am not the only one who is going through this situation. I am not the kind of person who gives in easily but as I sit here after having a gut full of moodyness and tongue lashing without a hint of an apology or hint of remorse, im not sure where i will be this time next week.
I wish you all the best in your situation and sending some much deserved love.
I am a partner of a woman with Ms can’t say she is nasty to me or anything but she seems incredibly moody at times and for long periods. I try my best and do everything i can to support her and to understand things but just occasionally its too much.
I know she is really fatigued but does often seem to me she can perk up for other people and go off and do something with them but literally has done nothing but lie on sofa in bed clothes and get up to smoke outside whenever i am here for probably last 6 weeks and i barely get a word out of her unless she has some reason to criticize me! Think because i try to be 100% supportive and really do my best to understand her ms i get the brunt of it in way that others dont and she is able to put on a short term act for them? which she couldn’t with me.
To be fair she has perked up a bit today and is far more talkative when i got home from work but after so long like shes been this time i did feel quite depressed this weekend and as she wouldn’t or couldn’t do anything with me yesterday, i had to f off for a few hours yesterday on my own.I think she did actually pick up on how low i was.I go to work but i pretty much dedicate my whole weekend to whatever she wants and can do,which is fine unless she cant do anything.Easier said than done but think i need to be a bit more selfish and do stuff for myself more often,even if it means she is stuck at home as otherwise i will break at some point and be no good to anyone.