MS Diagnosis

Contact your local MS Society. They will be able to give both yourself and hubbie good information and support you both need at this time.

I'm so sorry Daftbag that I don't have any suggestions but didn't want to ignore your post.

You say your husband is very shocked so his behaviour may well be because of this. It's a shame he wont agree to counselling but that doesn't preclude you from having some which could help you to deal with not only your own reaction but his too.

x

This is a sad situation and I am sorry that you find yourself there. Your OH's reaction is very unfortunate at a time when you need some TLC. I do endorse the idea of local MS society.

What a difficult time for you.

Sorry to hear this Daftbag - I think your husband is in shock and is fearful of the future.
I know 2 people who had MS and managed it very well. One was my hairdresser, who carried on working for a very long time and is still working for all I know. I changed hairdressers,
I’m not sure about PF - I’m sure that too can be managed well.
Perhaps your GP could have a little chat with him.
Good Luck 🌺

My first response is to send you some love and compassion as you grapple coming to terms with the double diagnosis. There will be others along soon with knowledge of coping with those conditions.

Your husband is in shock too I suspect, and is anxious about how he will cope. I think you would be best to ask the GP for a referral to support for yourself. It would be better to go together, but don't be put off going alone. This is a lot to cope with alone.

We're here almost 24/7, so call on us and I guarantee you will receive wise words and comfort.

I went on a respiratory rehabilitation course in the physiotherapy department of our local hospital. There were people there with PF and it was a useful and enjoyable course.

So very sorry to hear this Daftbag1. You really need support at this time, and I’m sure as others have said that your husband is in shock and anxious about the impact this could have on your lives. Please contact the MS Society, who will be able to help and put you in touch with others with this condition. A friend of my daughters has managed a demanding job, to bring up three children, run a home and enjoy a good social life, after being diagnosed many years ago. Regarding PF, you should get more information from your GP. Do you have a family and friends around? 💐

So very sorry to hear your double diagnosis and even more that you are not getting the love and support you badly need. Virtual hug coming your way. As well as the MS society Asthma and Lung UK are a wealth of knowledge on all lung conditions, perhaps a local support group might help you at least in the short term.

On the whole men don’t seem to deal well with illness in somebody they love. Quite a lot just go absent or , like your husband, turn quite nasty.

A few years ago I took it upon myself to remonstrate with a close relative about the way he was dealing with his wife’s illness. He sad, “ I don’t know what to do.”

He needed to be told exactly. Not like “Be kind, be supportive.” but “when she is in bed go in every hour and ask if there is anything she needs” “make the drink in this mug she can hold”. It seemed ridiculous to me that he couldn’t work this out for himself, but he couldn’t.

Equally she had to learn to ask for what she needed and wanted and not expect him to work it out. We were mostly brought up not to make “demands” but to wait for people to offer and so it comes hard to say ‘I would like…….now”. The now was important otherwise it got shelved into “when I’m ready” or even forgotten 🙄

Hardest of all was for her to ask for the emotional support in specifics. “I need a hug’ “ I need to talk about..” and, to be honest, although he was happy to give a hug, he was pretty useless at the talking.

Two diagnoses like this inch a short time is an enormous shock for both of you, and he’s not responding well. Like others I believe the MS Society could really help you 💐

I am so sorry to read that you have had this double whammy.

I don't have any experience of PF, but my other half was diagnosed with Primary Progressive MS some 11/12 years ago after 10 years (or more) of misdiagnosis.

The MS Trust and MS Society are both brilliant for you both in terms of information and guidance. MS is such a broad spectrum disease affecting everyone differently and it is easy to disappear down the rabbit hole of worse case scenario. Your MS team, Consultant and Nurse should have given you an idea of treatments available. I have found that treatment and support varies widely depending on MS type and where you live.

Its a really hard time for you both. Do you both have family members or friends you can talk to? If you feel you would benefit from counselling then take it - in our area you can self refer for Talking Therapy.

Understanding what your type of MS means for you and your OH is the first thing, knowledge is power and all that.

Take care and come back for a chat anytime x

This is so unfair of your husband isn’t it?
Yes of course he is shocked and upset at your diagnoses as of course you are, but that is no excuse whatsoever for him to be nasty and unkind to you.

We can all make excuses for his behaviour - oh yes men aren’t good at coping with illness but he really needs to step up and support you.

Do you have a trusted family member who could have a quiet word with him?

JenniferEccles

This is so unfair of your husband isn’t it?
Yes of course he is shocked and upset at your diagnoses as of course you are, but that is no excuse whatsoever for him to be nasty and unkind to you.

We can all make excuses for his behaviour - oh yes men aren’t good at coping with illness but he really needs to step up and support you.

Do you have a trusted family member who could have a quiet word with him?

It isn’t an excuse. It’s, unfortunately an observable attitude.

Phrases like “step up and support” don’t really mean anything unless someone tells him what it means practically. It’s just words.

It only makes him crosser because he doesn’t know what that means but is obviously failing. And makes the sufferer more unhappy because he’s not giving her what she needs, though nobody’s told him what that is.

We aren’t all instinctive carers. Some of us, male or female, find it very difficult to match other people’s needsor discern what it is they want us to do.

Why not give instructions if it helps both. For sure indignation won’t help anyone.

Daftbag1 I’m so sorry you’re having to cope with such a difficult situation. You’ve been given good advice on this thread. I would just add that there can be a bit of a waiting list for a good counsellor so it may be worth investigating whether your local hospital has a health psychology service that you can be referred to. Does your husband’s unkindness mean that he refuses requests for him to do things about the house etc?

Working as a PA to people with disabilities I found some people with MS were divorced. The spouses could not cope with the diagnosis and progressive symptoms and had left their partners as it got worse. I think OPs partner is going through a grieving process at the loss of the life they had together as anger is one of the symptoms of this.
Perhaps your Dr could talk to him about this anger if he came with you to your next appointment. Really hope you both come together and he becomes more supportive. Best wishes ❤️

I'm sorry to hear of your diagnoses Daftbag1 that's a lot to deal with so hope you can get support from other family members or groups.
I agree with others that your husband is probably scared and worried for the future but he really does need to put on his big boy pants and step up.
I wish you well and hope you get the support you need and deserve.

So sorry to read this. Do contact a MS support group. They are the experts.

He hasn’t changed since your last post three years ago when you were undergoing tests then, I wonder if you sought help from his GP as advised?
But, that was then, there’s lots of great advice here, you’re probably in shock to, so I would focus on yourself as he seems unwilling to change.
Contact all the advice groups suggested, take any help offered, do not be proud, you are your priority, just maybe your husband, in time, will be there with you.
My very best wishes for a more manageable future.

Back in the early 1960's my very young and new hubbie finally received a diagnosis of MS. Few symptoms, little or no treatment. It was the type that has continual slow progress. Those early years we just carried on as newly weds, problems with conceiving our first baby was automatically put down to his MS - although it eventually turned out I had blocked tubes.
Having a written report from one Consultant saying that this man is unlikely ever to father a child - we went on to have five (last two arriving together) in under six years.

Slowly affected his legs, but during those years he took - through evening classes his professional qualifications, and also (full-time in one year) a Masters Degree. Still found it difficult to get a job, particularly as large firms with Pension schemes would have him turned down by those pension scheme doctors.

It was his inability to provide as he wished to do for his family that drove the largest wedge into our marriage as it totally embittered him and he took that out on me.

Eventually, the pressures caused me to become seriously ill, which he could not cope with - just ignored. He eventually used his position as a volunteer worker on a local charity involved in providing housing to get a flat built suitable for him to rent, and when it was ready announced that he would be leaving me.

I was distraught about this, our children were now all in their teens, the older ones at Uni. His MS had by then caused much more serious disability - and no-one would believe that HE had left us. For years I was 'Persona non-grata' to his Mum and siblings. Indeed as time went on, he even managed to convince himself of this - several years later accusing me of breaking up our marriage. It was one of our children who had to remind him that he was the one who had left!!!

So do not just conclude that any break up of a partnership in which one has MS means it is the other one who has left.

When he was much younger he would always say that he would undoubtedly die young, not due to MS itself but one its side infection issues. On his 65th birthday he repeated this to me (we did remain friends for all our lives), and I pointed out that if he died that day, it would be sad but not a tragic young death. Despite the MS continuing its progression he actually died a few weeks before his 82nd birthday.

There is much more known about and support given to MS patients these days. Back when we had that first diagnosis, the doctors could not get rid of us quick enough, as they knew virtually nothing about the disease and how to treat it.

It can either be the slowly progressive type or else the type which can virtually disappear often for decades at the time. Whatever, with so much more support in every way, normal life can continue.

Two women close to me have diagnoses of MS. My DGD, 33, had what could have been a heart-breaking diagnosis about 8 years ago. With excellent care from her consultant and MS nurse, she has gone on to run her own business and is now mother of my almost 3- year-old DGGD. She does park runs regularly and walks her lively terrier. My DiL, 52, retired early from a very demanding career, runs and plays for a women's cricket team, works part-time and has a lively social life. I'm sorry I can't reassure you about your pulmonary fibrosis diagnosis, but I hope you will now feel a little reassured that life with MS can still be active and rewarding.