Family support

[lucieboo]

Difficult as my family live a fair distance away. I keep in touch, but the major problem is that my partner tries to dismiss my medical condition, he leaves it to me, fine as I am an independent person, but he always thinks I should try harder and leaves me behind when we are walking the dogs together, it makes me feel like a burden. Also, he helps very little and only when he feels like it, so I don't feel he understands or supports me. My worry is that I may not cope when my condition, inevitably, worsens: what then?

[Inca]

Morning Lucieboo,

I am with my only family at this moment in Wiltshire U K. One daughter ,her partner,they don't have children,just dogs ,horses and work hard at respective careers........Yes it is a worry as we age.I think in Fr we are more likely to have help than U K. All the Brits we knew have left Fr now,the grandchildren being the pull.At the mo ,I have good nurses,Drs,and Fr friends.This summer my husband had a gall bladder op and I was not good ,so daughter had to come over for 3 weeks to help out.That made life difficult for her and partner as he is self employed so needs to keep his clients happy.....like us there are animals to consider...so yes ,all a worry.Live for the day Lucie,it's the only way to cope.Wish I could follow,that mantra.!

Miserable. wet and chilly here today,enjoy the rest of Fr good weather! Sally

[Inca in reply to Inca]

Meant to add,yes I feel a burden too,very often..tho my husband is very supportive,when he was ill in the summer,it did bring it home to me...

What if...?? Sally

[lucieboo in reply to Inca]

Well, I keep going and I am naturally cheerful which I think helps, also the sunshine here, but not too hot: I am in Spain at present, a few weeks to gear up for winter. I just don't know how HE would cope with illness, probably not well, he is scared of hospitals: perhaps it won't happen? I do find the animals a blessing.

You are right about support in France, seems very good. Homecare etc. Keep smiling!

[mhos61]

Hi Lucieboo,

I wonder if your husbands actions are more a way of if he doesn’t address your health issues, it’s not really there, a kind of coping mechanism? Whatever the reason, it’s not helpful to you. Support is the thing we all need.

Do you ever come to the UK? It would be good if you could bring him along to an MPN Forum, it may open his eyes to your symptom burden and understandable long term worries.

Best Wishes

Mary xx

[lucieboo in reply to mhos61]

Mary, you are most kind, but he wouldn't come. I am aware that it is a defence mechanism and I am coping, but sometimes only just. He avoids anything to do with health issues, even won't visit his sister newly diagnosed with stomach cancer, so he won't change, I just have to deal with it gently.

[john0084]

I feel for you . Try and be strong do you have a friend you can talk to. I have pv and I'm my wife's carer more importantly I have a 4 year old so I can empathize.

[lucieboo in reply to john0084]

John, how lovely of you to write and I wish you all the best in the world, a true hero. Perhaps I should try to be more patient.

[john0084]

thanks for your comment, its made my day

[stillkicking]

I feel so fortunate in that my wife does support me, she is probably about the only non MPN person that really understands my ups and downs with it. I am so sorry that you don't have that support, and actually have to tread carefully so as not to upset your husband. You sound like you certainly do your best to understand him, and also to keep as fit and active as you can.

Kind Thoughts,

Peter

[lucieboo]

Thank you Peter. I have some good friends. The forum is lovely as you can unburden yourself and get all these lovely replies. all the best.

[redumbrella]

Hi Lucieboo, Yes its me again, I am not sure what to say to re your Husbands lack of support, I mentioned in my previous post my PV and PMR.

In all that time I had practically no suppory from my Wife she never accompanied me to the Hospital even the very few times that I asked her to. In the end I just stopped asking , until recently when I attended the MPN Forum in Dublin and discovered to my horror that my "disorder" had been reclassified to Cancer ten years ago.

When I related this to my Wife on my return home she changed the subject completely, it was two days later before it came up again when I told her bluntly the hurt and lonliness her lack of support had caused me. Yes it upset her bu the last couple of times I had appointments my Wife came with me

I also hope that she will come to the Cork Forum next year.

Sorry for the ramble, I hope that you can find some way to get your Husband to realise what you are going through.

In the meantime please look after yourself and be kind to yourself.

Garry

[lucieboo in reply to redumbrella]

Good luck Garry! I am actually managing quite well and I am tending to just leave me spouse to his self-centred ways. His wife kicked him out, I can see why, but I don't think he means to be so selfish, he just lacks empathy.

[MCW22]

Sounds like some spouses need reminding of their vows ' in sickness and in health' . I will just add it this that I am very happily divorced.

Carol

[lucieboo in reply to MCW22]

Yes, well, that is always an option, but then I think ?How will the poor old bugger cope on his own?' He is just like a big baby, but at least he lets me do what I want, not like my first husband!

[Wyebird]

I went through something similar but not as extreme. I requested a Macmillan councillor. He came to visit me. Luckily my youngest son was present. Later my eldest visited. The message got through to both of them. Unfortunately my husband wasn’t present. He is willing to help but like you, when it suits him. He never attends clinic with me as he still works.

I think you both might benifit from a councillor. What do you have to loose.

[Searcher56]

You did not mention your age. My husband became ill five years ago, I nursed him at home and then he eventually died. Doctors did not know the cause of his illness. This was before I was diagnosed with ET at the age of 60 in November 2016. Now I am alone but my grownup children live nearby. ET or not, eventually I will grow old and I will not be able to cope. It could be your husband who will need a carer before you, if he cannot face the facts of life, then you could get a bit tough with him. Refuse to go for a walk with him, go by yourself.

[digijools]

Livorno,

That is terrible. I felt like that when I couldn’t keep up with colleagues going to lunch. It is hard for people to understand. I would suggest couples counseling to help your partner listen to you and you feel supported explaining what is like when you hit that wall and have no resources to “try harder” with.

Keep in touch!

digijools

[lucieboo]

I am becoming more resolute with all the helpful replies on the forum. Thank you all, and good luck!

[Rebeccca]

Defence mechanism or not, your husband's behavior is unthoughtful at best. Leaving you behind under any circumstances is horrible - how does he think you will feel about that?

Regardless of MPNs, if he's not good for you, or to you, I'd take a good hard look at him, and be honest about what's keeping you there. If it's to take care of him, that's is fine if that's how you want to invest precious life.

I'd definitely not walk with him. I wouldn't do anything with him. I think that as much as we are more vulnerable because we have conditions that threaten us, we are also much stronger because we have this information about our health, and can use it to focus our attention on what's really important to us.

Couples counselling at least, and maybe show him this message: Lift your game!

Full disclosure here - when mine couldn't step up for this and another health issue, and try to acknowledge the impact of diagnosis (I got 'you'll be fine', and some unhelpful dietary advice), I felt emotionally abandoned. Me being anything but 100% on my game was not comfortable for him).

This was not necessarily a new behaviour pattern, and it highlighted his selfishness and/or thoughtlessness in other areas. I am very happily separated. That's not my advice, just my experience.

[lucieboo in reply to Rebeccca]

Thank and good luck. If I was younger I probably would take your path, but at my age (and his) it just seems kinder to tolerate the all-too-common selfishness of a man. It is a second marriage. After the super advice from the forum I am now walking alone and I do most activities alone or with a friend, it is his loss! I don't think he minds too much. If I need to care for him, I will, of course, within limits. He is not a nasty person and doesn't mind me going out-and-about without him. Keeping going is what keeps me going, to be honest, I can manage the housework and am making plans for the gardening when it gets too much. We live in a beautiful part of France and visit my little house in Spain Spring and Autumn and it is a good life on the whole. Take care!