Getting family to understand

Everyday living
1

I have had MS for quite a number of years, finally diagnosed around 2002 (my first obvious relapse was in 1995 when I developed Optical Neuritis). I carried on working (first in a busy shop as Manageress, and then as an Administrator in an Office which was part of a large Company. I was made redundant in 2003 as were many others in the Company, and failed to get another job.

I have never had what I expected a relapse to be like, just times that I am utterly exhausted and even struggle to walk without help over the last few years. I have also found doing day-to-day housework difficult, even with resting regularly in between tasks. My sleep pattern is all mixed up meaning that I go to bed late at night, take ages to fall asleep and as a result sleep till mid-day most days.

I hardly ever leave the house now except for dental appointments, doctors appointments and very occasionally hair dresser appointments. I have recently started to go to a support group for local people with MS once a month.

My partner of 22 years, who works busy factory shift work, is finding it all very difficult to cope with to the extent that he is getting very depressed. He told me tonight that it is because of me and my illness, and he thinks I should try to get back to living a ā€˜normalā€™ life like I used to when I was working. (He even hates or resents the fact that I now attend MS Meetings) and says thatā€™s why heā€™s drinking more alcohol and being so short tempered with everyone and, Iā€™ll have to find a way to change orā€¦and left it like that.

I would like to ask if anyone could give me some advice on what to do.

Thank you in advance

Jacqueline

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I cant reply direct Jacqueline, but do not allow your husband to blame his own failings in your illness, how dare he.

How does he think you feel then?

Instead of him putting it all on you, he should be encouraging you to get back to something like you were rather then making you feel worse about your illness.

When was the last time he actually said to you, come on lets go out for a drink, or i will treat to you a meal, I expect you would have made the effort and gone.

On another note i do think you need to sort out your sleep pattern, that really isnt healthy at all. I would see your doctor about it. You should be going to sleep at a normal time, sleeping the way you are means most of your time is spent in bed when you should be up.

I am lucky, with my sleep. I get up early 7am, and do all i have to do as i found energy time is morning. I go to bed at 5pm, and rest and have time on my own and watch the telly, and i am usually asleep by 8pm, yes i wake 2 or 3 times some nights but i keep my diazepam handy for that as the spasms wake me up and the loo lol. I dont sleep with my hubby oh no thanks he snores lolā€¦

I dont think you have quite got the hang of your MS lol. Maybe your just drifting along with it but you have joined a group which is good.

Sometimes as well we forget we have partners, but i am again lucky in some respects as we are both retired and my hubby is ill too, so we muddle along.

I think you two need to sit down and work out why there are the issues. Try and form some sort of plan to be more together at the weekend say, or at least go out with each other one night a week or similar.

Is there any reason why you cant sleep or laying a wake are you worried about something else?

I do think you need to get this sleeping issue sorted as then the rest should hopefully get better.

BUT your husband has no right to lay this on your door, he should be more active trying to help you get through the journey with MS not blaming you for his own inadequacies.

COMMUNICATION is the key, and see your GP. xxx

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Your husband just does not understand he thinks if you try harder your MS will go away.omg how we wish.I really feel for you though i have had MS 25 yr now and am housebound and ill all the time.I am expected to all of a sudden get better when theres a family drama.My family think i can just magic at away its so annoying.i have tried and tried to explain to them BUT still they donā€™t understand and never will.it wears you down it really does.

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is it the way you respond to having m.s. that is causing the problem?

Iā€™ve a friend whose wife has m.s. and what bothers him most is that she never ever complains, never ever talks about it.

Others with m.s. talk about it incessantly and Iā€™m sure that could bother someoneā€™s partner.

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Oh for gods sake! Sorry, itā€™s just this post has really made my blood boil. How dare your husband say that heā€™s drinking more alcohol because of your illness. If heā€™s drinking too much then heā€™s got a problem, but thatā€™s for him to own and is by no way your fault. Sorry, but he is being emotionally abusive by blaming your for his shortcomings. If heā€™s unhappy then HE needs to do something about it. You have MS, itā€™s not going to go away and thatā€™s the way it is. Tell him to grow up. Sorry, that may all sound harsh but I feel quite annoyed by this.

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A classic example from the ā€˜now look what youā€™ve made me do?ā€™ school of unreasonable marital behaviour.

I am sorry that you are having a horrid time. When someone isnā€™t fighting fair - and he isnā€™t fighting fair - it is so hard to know how to respond. How does a person respond to the accusation that she isnā€™t the person she was before she had MS? There just isnā€™t an answer. It must be so distressing to be undermined in this way. Just donā€™t let the unfair comments chip away at your self-confidence - not more than you can help, anyway.

Whatever is eating him, his own distress is leaking out in deeply unhelpful and unkind ways. Is there a mutual trusted friend or family member whom he might listen to if that person pulled him up short? He needs to catch himself on, no question, and most of us need a bit of help to do that, particularly if we are too sunk in misery (as perhaps he is?) to mind our manners and look after ourselves.

Alison

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Iā€™m sorry that you are going through this. If your husband is unhappy about you going to the support group then that suggests to me that it might be even more important that you go. Sounds like you could do with the support of people who understand how hard MS can be. Im thinking of going to my local group, though in rural Wales local doesnā€™t necessarrily mean close. Also maybe some couple counselling would provide a calm context in which you can explain to him how hard MS is?

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Hi Jacq,

I hear ya,& have the badge, but no longer wear the hat! as my ex!!! (*%^$) became an ex!..but she did say if it had not ov bin for my illness ,she would not of ran off with her boss, IE my fault (Doh!) silly me!

But it really does sort the wheat from the chaff!! not the wordā€™s i would of used yrs ago!!

sleep is very important! but it will come when you find a little peace! though iā€™m still waiting

take care, Julien, xx

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Iā€™m sorry to hear that Julien. My wife left me when I became ill, though we didnt know it was MS at the time. Hope you and I both find someone better.

Rupert

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But not the same someone of course. :wink:

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[quote=bob]

Iā€™m sorry to hear that Julien. My wife left me when I became ill, though we didnt know it was MS at the time. Hope you and I both find someone better.

Rupert

[/quote

Hi Rupert, we do, if the time is write, eventually, i think! i got wed again, but my problem is, giving 100% trust!! but so far, so goodyes the present Mrs juju seemz to be scratching up ok!! we laugh,we happy!! but it 's always my own insecurites that kick me! Oh well onward & upward !!

stay safe & smilesmiley Julienā€¦

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Jacq

YOU SAIDā€¦ā€œMy partner of 22 years, who works busy factory shift work, is finding it all very difficult to cope with to the extent that he is getting very depressed. He told me tonight that it is because of me and my illness, and he thinks I should try to get back to living a ā€˜normalā€™ life like I used to when I was working. (He even hates or resents the fact that I now attend MS Meetings) and says thatā€™s why heā€™s drinking more alcohol and being so short tempered with everyone and, Iā€™ll have to find a way to change orā€¦and left it like that.ā€ ā€¦

I can understand that your partner might get depressed by your condition and its impacts on you both, however I do not understand the (frankly perverse) response that you should ā€˜flick a switch and get back to normalā€™ . Sadly life is not like that and someone needs to help him understand this, so that he can be reasonable and do what he can to understand your new circumstances and adjust as part of the team.

This is the politest way I can put it. If I had responded when I first read your post I would have ā€œlost the plotā€

Being part of a couple is quite easy when things are going well but a relationship gets a serious work out when bad things happen.

MS or any nasty illness never just claims one victim, you need to be there for each other at the tough times.

I wish you both all the best and hope you can work it out between you.

Good luck.

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Thank you for replying to my post. You said ā€˜do not allow your husbandā€¦ā€™. Once upon-a-time I would never have allowed anyone to talk to me the way he often does. He is a very determined person (or comes across as one) although he has told me in the past that heā€™s insecure i.e. not sure of himself and what heā€™s able to do (he is dyslexic and although he can read, often asks my advice about spelling etc. (I got Higher English at School and he didnā€™t) When he gets very uptight about something he shouts at me and out 17 year old Daughter if sheā€™s there (although last night he asked her to go to her room). Once-upon-a-time I would never have let anyone treat me the way he quite often does now. But when he shouts itā€™s actually easier in a way to just let him get it all off his chest than try to butt in before heā€™s finished. I donā€™t think he has actually considered how I feel, when heā€™s in that sort of mood it seems to be about how he feels!

I canā€™t actually remember the last time we went out as a couple - it was certainly years ago. Yes, if he had said lets go out I would have been happy to go.

I donā€™t know of any reason why I canā€™t sleep except I canā€™t relax enough to actually fall asleep (I often drift off whilst Iā€™m watching the TV but, if I get off the sofa and go to bed by the time Iā€™ve walked to the bedroom, gotten undressed and in to bed Iā€™m wide awake again!

I will make an appointment with my GP soon for help with the sleep situation.

Iā€™ll finish talking now.

Thank you again

Jacqueline xx

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Youā€™re right that my husband does not understand. Especially when I say the being too hot makes it worse - his answer to that is "Well, Iā€™m not going to be too cold in my own house for anyone!

I often feel like Iā€™m talking to a Brick Wall when I try to explain what Iā€™m going through, he actually sayā€™s ā€˜I donā€™t believe thatā€™ which to me sounds like heā€™s accusing me of lying. Aaaaargh!

I could show him many articles is MS Magazines which would back me up but, he wonā€™t read them although I donā€™t know why. Itā€™s almost as if he would have to admit he made a mistake and was wrong!

I agree with you about it wearing you down, I think Iā€™ve almost given up trying to get others to understand.

Thank you very much for replying to my post, it does help when I know some folk actually do understand!

Jacqueline

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Iā€™m really not sure about that. I donā€™t talk about it a lot but, what I do do (which I know annoys him 'cos heā€™s said so) is post things Iā€™ve seen written by others about MS on Facebook for friends to see and read , in the hope that some will understand what people with MS often go through (myself included).

Thatā€™s given me something to think about.

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I agree with everything youā€™ve said and wish I felt brave enough to tell him. I tend to get tongue tied and slur my words these days if I confront anyone since MS appeared in my life and,forget everything my Speech Therapist taught me. And this time he (my husband wouldnā€™t remind me to take my time, think about the words I want to say before I speak, as he has done when he see Iā€™m struggling to talk to someone).

I have thought about telling my sister whoā€™d have no qualms about telling him but that could cause more problems.

I might tell her and say what she says about it to me first, if I ask her not to and why, she wonā€™t.

Iā€™ve always got her to back me up if I need to.

Thank you very much for replying to my post.

Jacqueline

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Well put Mogace!! well put!!

itā€™s so hard to be polite when someone is acting like a complete prick!!

There, said what most was thinkā€™nā€¦

But may i js add, when or (if) you find this elusive, (nah! magical) switch, you can thank him!! as we all will.

Julien, xx

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Thanks Julienne,

reading other peopleā€™s posts and responses on this site has helped me to discover some tact when my initial reflex is ā€œexplosive potty mouthā€

Someone I worked with years ago told me that when I feel a massive reflex response to something, I should hold my breath for 2 seconds an think a bit or say the second thing that comes to mind. This has saved me from making an idiot of myself a couple of times, but there have also been many times when my first incandescent response was required.

time to stop wittering.

mick

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ā€¦ not sure where the extra ā€œneā€ in your name came from, sorry, just a misspell , canā€™t even blame auto correct.

M

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Sound greats. But does she have a sister? :wink: