Getting family to understand

Everyday living
21

Jacq, my thoughts, for what they’re worth…

It isn’t just YOU who has MS. You BOTH have ms. It affects both of you either directly or indirectly. It may be that one of you gets offered help/medication/sympathy/understanding, the other doesn’t. “What about me?!”

I suppose it’s unlikely he would go, but have you actually asked him to attend the ms meetings with you? Just because you’d like him to be there with you. You don’t need to add that he might gleem some useful insight into what people actually endure. Don’t take offence if he refuses.

It’s possible he is actually very frightened of what lies in front, for both of you. I know sometimes I get very afraid of my progression, and then the monkey chatter starts in my head. It can be hard to silence it. I can no longer drive so have become dependant on my husband to take me everywhere. He gets to have the final say as to where and what time we leave to get there etc. I hate that and really miss the “old me”, who was strong, independent, impulsive and spontaneous. C’est la vie.

If you could possibly find a way to afford a mini break away so that you’re on neutral ground. If a sunshine break is out of the question, maybe a couple of nights in a small hotel? Different surroundings and without any expectations, it could give you both an opportunity to talk openly about how you are both feeling. The resentment, the anger, the guilt, the sadness, the hopelessness, the fear, . They are probably all emotions you and/or he are feeling at some stage. As for the ultimatum, “you’ll have to find a way to change or…”, how about turning the tables and telling him you’ve given that some thought and (very calmly) come out with something along the lines of…

"You obviously are not happy in the relationship anymore. It isn’t just me that isn’t the way I used to be. You have changed too. Where is the man I fell in love with gone? He used to listen/understand/talk (or whatever fits). I miss him and don’t know who you are any more. If you feel there is a better option,then maybe you should take that opportunity and go, because as much as I’d LOVE to be the active person I used to be, to go back to normal, “how things used to be”, that’s not going to happen. This IS the New Normal.

Finally Jacq, and you might not like this, we cannot blame ms for everything. Sometimes a relationship, reaches a natural conclusion. It just dies. Through nobody’s fault, it just comes to a close. There doesn’t have to be a third party, illness, debt, whatever, just that the flame has died and the embers have all burnt out. If things were to appear that way, then you are going to have to muster what strength you can, and concentrate on how you, and your teenage daughter, will manage. Because if your partner should decide to leave, you WILL manage! It’s called Self Preservation. Every person who has found themselves in a newly solo situation, does manage, and probably goes on to find an inner strength they’d long forgotten and a new happiness they never imagined might be possible.

I wish you all the best. x

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22

I agree, although with my previous temper I have learnt to keep my gob shut for 24 hours, then quietly say what I want to say and get my point across without the other person knowing what is happening. Sometimes, the next day, I can’t even be bothered anymore but yes, I agree with you.

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I agree, although with my previous temper I have learnt to keep my gob shut for 24 hours, then quietly say what I want to say and get my point across without the other person knowing what is happening. Sometimes, the next day, I can’t even be bothered anymore but yes, I agree with you.

24

Thank you very much for replying to my post, and I apologise for the late reply.

I know that we, as a family are affected by MS but I’m really at a loss as to what I can do to ease how it is affecting my husband and daughter.

As for asking him to attend an MS Meeting with me, I haven’t because when he has driven me to one, he doesn’t even come to the Entrance of the building with me. He lifts my ‘Rollator’ out of the car boot, asks if I’m Ok to carry on myself, watches me walking from the car, then going in to the building, to make sure I got there without tripping or falling.

When he picks me up again after the meeting, he waits in the car till he sees me appear again to go home.

He’s only ever done the above once or twice due to the shifts he has to work. I usually have to get a lift from someone else.

I really don’t think he would feel comfortable going in with me although, as you say he might learn something if he did.

And yes it is entirely possible that he’s frightened of what could lie ahead, especially for our daughter if she develops the disease. I have told him that the odds are very low that she might, but it’s enough for him that I’m her Mother and I’ve got it so there a slightly higher risk that she will. That terrifies me as well but there is no way I want our daughter to know. She does know what the odds are but, all we can do is hope that she never will develop it.

Neither myself or my partner are very happy in our relationship any more. I think that he thinks if I get back to the way I used to live (normal to use his description) we’ll have a chance to put things right. I’m not so sure.

If we do split up, I know I’ll manage on my own because I’d have to. I have thought recently that it might be easier for us all.

Thank you again for your reply and best wishes.

Jacqueline x

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We found Family Therapy helpful - ask your GP

Best wishes

Fay

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Thank you for replying to my post

Yes, I am having a horrid time. He’s been talking to me in the same manner for months now, every few weeks he has an outburst like yesterday. Then the next day, he goes back to being almost nice and calling himself names as if to make up for the day before.

I know he’s being unfair, and I know I’m not the person I used to be, but it’s so hard to fight my way back and I’m not sure if I could. I know I’ve lost almost all of my self confidence and he doesn’t help, what doesn’t help either is that our daughter is sometimes almost copying her dad when she talks to me.

I’ve been racking my brains, trying to think of someone who could talk to him about the way he’s been acting - as yet I haven’t decided but, it’ll probably have to happen one day soon.

Thank you very much again.

Jacqueline x

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27

Thank you for replying to my post.

The reason I do go to the support group, is because the people there do understand how hard living with MS is, so I don’t have to try to explain. When I say local I mean 5 or 6 miles away, I have been to a group who meet closer to where I live but, they all knew each other and obviously had for quite a while, so although I wasn’t ignored I felt unwelcome so I never went back to it. The one I go to now is newly set up, and the people who go to it all started going at the same time, so we’re all getting to know each other at our own pace.

I have been wondering how I could explain to him how hard living with MS is. Couple counselling might just well be the way to go. Thank you for suggesting it.

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Hi Julien,

Thank you for replying to my post.

My partner did say he wouldn’t leave me because I have MS (one of work-mates left his wife because she has MS and my OH thought it was a terrible thing to do).

Sometimes though I almost wish he would, usually after days like the one we’ve just had!

As for sleep, I plan to visit my GP very soon to discuss ways I could change my sleeping pattern.

Thanks again

You take care too

Jacqueline x

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Thank you for the suggestion, I’ll look into it.

Jacqueline

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Your partner may find it very difficult to live with someone with m.s. but if he left he’d feel an absolute s*** to leave someone with m.s.

If that’s the case your partner feels trapped and resentful.

(Don’t think it a good idea to involve your sister or Facebook)

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31

MS can be a demanding bugger. It can make victims of more people than just the person who receives the diagnosis.

My family was torn apart by MS once before, by a particularly severe strain of the disease. For this reason, none of them know of my diagnosis. It helps that we are not particularly close to begin with and that we are spread all across the planet!

Ultimately, one inherent truth of the human condition is that we are all selfish. We are. We just are. You have to accept this.

With regard to couples specifically, this natural selfishness can be manifest in the form of the sufferer asking “why can they not be more supportive? I never asked for this disease. Do they not realise what i go through? they better not ever leave, i need them to help me and keep me company!”

Meanwhile the spouse is thinking “I cannot believe they feel so tired; we all get knackered from time to time. You know, i don’t have to live like this; i am not the one with a disease; i am fit and healthy, the world is my oyster. It is sad certainly, but life is for the living! i’m outta here!!”

Due to love or simply social obligation, we do our best to suppress these attitudes and we certainly very rarely express them openly and honestly, even to the point of denying such thoughts even crossed our minds. But they do and they will.

The demands of MS are relentless and this can become unsustainable. Breaks start to occur in the minds of those burdened by the inner demons of selfishness, versus the outward need to ‘do the right thing’. Life is supposed to be battle. It’s just nature’s way.

Often i suspect what really causes a wedge between two people, who’re living in each other’s laps, is just a failure to be honest. This is not to say overt deception is being indulged; it is just that efforts to paper over the cracks of day to day life, has resulted in little more than a heaving mound of amorphous papermache! (a piss poor metaphor there. i apologise.)

To the OP… your situation is highly personal and the details i imagine are so minute, it would be time consuming and indeed inappropriate to dissect them all in here. My advice, for what it is worth (if anything) comes from another thread in here recently:

Never apologise for your shortcomings, but be grateful to those who accommodate them.

For example, do not say “i am sorry i like to have the house so cold” but do say “thank your for wearing an extra sweater in the evening.”

And ultimately, sympathise with the one who shares the constraints placed upon you by this disease. Cut to the chase and stop bull5hitting each other. No one drinks booze because someone else has a horrible disease, they do it to escape reality. That’s just basic psychology (and another facet of human nature; a consequence of self awareness).

If you are in a relationship, you need to work together. Both of you need to appreciate that both of you have been afflicted by the disease and both of you need to work together to overcome the challenges it presents. The pay off, is that you will both benefit from such team work. Failure in this however, is that the perception of this relationship failing will provoke almost everything being worse than it needs to be.

Anyway… this post is already about five time longer than i had intended it to be. I hope you find at least a nugget of sense within it somewhere. And if all else fails, consume some cannabis together (i am not even joking).

All the very best.

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32

Paolo that is a great post.

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33

Thank you for replying to my post. I am going to visit my GP this week to ask for help or advice on how to get my sleep pattern sorted.

I may also ask him/her (not sure which GP my appointment going to be with till I get there) for some advice about who would be the best person to ask for help to explain to my partner about ms and how it works (or doesn’t) because, he (my partner) obviously doesn’t believe me when I explain it to him, and I know for a fact that he’'d believe a medically qualified person.

Then we might survive this as a couple.

Thank you again

Jacqueline

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Thank you for replying to my post.

Jacq

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Oh Crazy Chick…He sounds a little ungreatful, but as much as we moan we still love them. My mother in law has COPD she smocked 40 a day for 20 years even when she was pregnant with my hubby. She quite about 20 years ago and copes really well with her COPD now. I had a bit of a tantrum last night, I asked hubby to put the recycling in the bin outside and when I got home he hadn’t. He was out, so I tipped it all over the kitchen floor I was so cross. This made me feel a little physcotic but I’m fed up of asking I feel I’m nagging and I’d been asking for a few days. But it’s all gone this morning, so I’m hoping next time I’ll only have to ask once. I’m pretty sure it was more effort picking it up off the floor than just carrying the bag outside. Wow that does make me sound crazy. Cat xx

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I swear… this sorting out rubbish and recycling is more trouble than it is worth!

Our house has five different bins, boxes and bags for our rubbish! FIVE!!!

i know the local council doesn’t have the facilities to make the most of the painstaking sorting we are obliged to fulfil and it all goes in the incinerator anyway! at what cost to the domestic bliss of an otherwise happy homes the world over!!?

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Cat,

not crazy, just irritated and or frustrated. As a bloke I do understand in that my wife and I often have different priorities and I can sometimes forget the first request by the time different requests come in.

Fingers crossed that your message got through and is retained.

Mick

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I’m pleased you don’t think I’m crazy and I’m pleased to say I’ve had no such out bursts since, and never intend to. Although my recycling has been kept empty since such demonstration of frustration.

39

Hello,

A reply as a new member! Family member and others may fail to see what M. S. truly is;crippling from the inside out. They tend to fail to offer the correct support. I have been told I’m playing the M.S. card in the past from those who should love me better. Positively speaking, i think it would be a good thing to harness what your husband says to which could end up with some very constructive actions on your part. I have found slow and steady wins the race. I.E. start an online business or activity. Join a group that shares new or old interests or go back to something you always wished you could do. maybe your husband could join with you too in these new ventures.

There will be some better days says she; who at one stage suffered with incontinence, optical neuritis, trigeminal neuralgia, back pain numbness, loss of vision, colour…

It’s a dent to the ego, I know but don’t let it take hold of ‘who’ you are.

the best of wishes to you and to your husband too. xx

R

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Hi, im new to the community, diagnosed with relapsing and remitting MS. I have 2 children and am a single mum. I work full time so my mum supports me with housework and meals ect. My 2 children constantly get on at me for being lazy, saying i dont do enough around the house. My biggest issue is fatigue which mean after work im exhausted so am thankful for my mums help. I tried showing them a support video, but all they tell me is that it was someone in a wheel chair and im not, so i have no excuse. Just wondering if there iscanyone who can help me to get them to understand, i dont want their sympathy, just understanding.