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Just Hello Really

Hi. I’m new here - husband to relatively newly diagnosed MSer (less than a year but we suspected for some time). She’s off work and probably not going back (not to that job anyway). Starting Lemtrada soon after relapsing on previous meds (which wasn’t fun).

If I had a question I guess it would be how to help her without making it obvious? Initially I simply took over everything - literally - so she could take it easy, but especially over Christmas this became too obvious to her and she started feeling stressed and guilty that I was doing ‘too much’ which of course didn’t help. While I do work full time I have a flexible job, love cooking (always did it anyway for her and the two boys), worked out that using the washing machine really ain’t that tough (thank you tumble drier though!), and no one is their right mind dusts the house these days any way (do they? Don’t answer…). She is utterly fantastic, susceptible to a touch of cog fog (I’ve been reading endless blogs and autobiographies so hey, I’m down with the lingo), bit creaky and wobbly at times of course - nothing that will surprise you people; so, any tips?

No worries if not, just wanted to say hello and thank you for this forum - while I’ve not posted before I have been very busy reading, and it’s very helpful though one does need a tissue or two at times while reading!

You sound a fab hubby. I’d sit down with her (and the boys if they are of an age to understand) and try and figure out what she feels she can do and what she struggles with.

Fatigue is a big issue for ppl with MS and I know while i will motor on in the morning, come 2pm - I HAVE to snooze. At first, I was pushing on and the kids would see me wilting and say, “Mom, go and lie down, I’ll make the tea”.

So have a think. Is there a time of day when she is better/worse? I know nothing is getting done after @ 7pm in this hoouse!!

And adapt HOW you do tasks. I can’t walk round a supermarket anymore. I can sit and order grocery online and get it delivered. I can’t stand and do a major Delia like effort in the kitchen. Woohoo the microwave. And sitting down to prep stuff - peeling, chopping etc.

You need to have the conversation because SHE may be resisting the fact. No, I can still cope…But you have observed a difference you kinda have to say, well I noticed you were struggling with xxxxxx.

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Hello, What a thoughtful chap you are. As a bloke with MS I get really fed up with having to say “Thank you” a million times a day as my wife says that she’s “just done something”, like made me a tea. I doubt if your wife really thought you were doing too much, but try not to wrap her in cotton wool. She may be a lot tougher than you realise. In fact, while she’s off work why not get her to do the cooking, laundry, dusting (if you must), put the shelves up, clean out the garage and worm the dog. Apart from getting your kid’s shirts cleaned properly it’ll take her mind of her MS. And you can come back to the Forum and we’ll give you some more helpful tips. You can write a blog about your experience (from a hospital bed, probably). Regards, Albrecht Durer

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anthony, you’re wicked!

made me laugh and splutter my brew out.

kitty’s husband

would it be any good to cook a meal together, one of you the sous chef, the other the boss chef.

it wouldn’t be safe for me and my husband to do this, prime ground for a battle and there’s sharp knives!

no, scratch that suggestion.

anyway when she starts lemtrada you will both see a difference.

keep communications going.

carole x

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Wow - thank you everyone, I wasn’t expecting responses so really, thank you so much.

So - it all sounds very encouraging. We started an online Morrison’s shop (other stores available) and aside from me getting a little (ahem) obsessed with the online app and adding things every few minutes, it’s a seriously good idea. Straight to the door, we can plan around the delivery, pop the wife to bed for the all important nap, and unpack - job done for the week, brilliant. Don’t know why it took MS for us to find this out, but anyway…

Cooking - not an issue. I’ve always done all the cooking (another obsession of mine) so would never expect her to do more than make a Pot Noodle for the boys! Mind you, I would probably still be the annoying husband hovering over the shoulder giving advice…

Communication - you are soooo right! She’s the sort of person (one of the things I adore about her) who if someone suggested she do something, she would immediately do the opposite! However, she’s becoming brilliant at recognising that if I ask her to (basically) go away and lie down, it probably means she needs to. Ditto if she needs a massage, or have some help getting dressed, all those sorts of things. I guess I need to just be patient. Oh, and get her to worm the dog, of course!

Thank you all - timely responses as we got the Lemtrada dates through today (gulp)…

So next question - what the (insert (un)suitable word) should we be expecting? I’ve taken as much time off work as I can including the week after treatment and will make sure I am around as much as possible, but any other advice - practical, emotional, amusing - would be very welcome.

Lastly - love the Blog idea. I have another one for my professional life, I may give it a go - would people be interested in one from a Hubby perspective???

hi kitty’s husband

there is a forum for lemtrada users on facebook which should give you a good idea of what to expect.

a blog would be good, there are a few blogs on here.

have look at the section “news and blogs” on the orange banner at the top of the page.

carole x

Kitty’s hubby, do you have a name ? You are getting it right… From your posts. But you are a person in your own right. It would be great to know you !

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Hi, I am a newbie to this but I am my wifes full time carer and hubby too and father to a 7 yr old child from hell ( love her really !!!). I too love cooking like every person who is a carer it seems. Father, hubby, chief cook and bottle washer which when I first took on the role was rather stressful but as the years have gone on I seem to have blended into the role and now its not a problem for me to look after both of them.

I try to look after myself as well . As someone said, if I crumble then so will they so I try to look after myself to the best of my ability. I always say to my wife, “if I can wake up in the morning, its a bonus”.

I love my wife and my little girl as they are my life. My wife goes to an m.s. centre which has an oxygen tank which helps pump oxygen round her body which helps her immensely I think.

Its nice to be here and to start chatting with all you people.

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smileyI do indeed have a name! My wife is rather private though so it’s just Kitty’s hubby for the moment, I hope that’s ok x

Brilliant, thank you Carole, I’ll check all of that out…x

You can make one up ! My name is not Sarah or smith ! It was more so we could communicate with you as a person. Rather than just a other half. Lol, I came up with Sarah smith to be unidentifiable ! It feels a little strange when people 'talk to me as ‘sarah’

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Ah I see! In which case call me…Kato Hansfield! (Still going with the KH theme…). Pleased to meet you Sarah Smith!

Wow - pretty busy then! Sounds like you need to look after yourself - I hope you have a good support network.

I dont like to keep busy but being a carer for wife and child keeps me very busy. I am at this moment getting a rest as my wife is in the oxygen tank for an hour so its time out for an hour.

I do have a lady who works in a community centre on the wellbeing side of it who I have been talking to for the past 2 Wednesdays . It is a support worker who I chat to with any issues that I have and I am seeing her on Monday too. Its a way of getting things off my chest if things get a little too much. We are trying to get the same sort of thing for my wife as she also needs someone to chat to about any issues she has with her m.s.

It good to talk as they say !!?!?

I absolutely agree, talking is very important - for all concerned! We’ve found the MS nurses really helpful, it’s nice being with folk for whom MS isn’t a dirty phrase but more a way of life! One of the amazing things about this site in fact - all sorts of people with all sorts of experience all linked with that cheeky monkey MS!

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I was chatting on this website before but with all my other commitments I lapsed but now I am back. Its a way of life now. When I left work to be a full time carer for her I did not mind doing it but for a while it was getting on top of me but I have past that stage now and I will do anything that she wants me to do but recently I have found time to chat because I might have something thats of interest or use to another m.s. sufferer or carer.

2 days ago my wifes nurse came round who we haven’t seen for a year and we had lots of questions for her. And in the past 2 days more has been getting put in place I.e. commode, hoists etc. I just wonder why it took a year to get things sorted out. Is your m.s. nurse good or have you got one thats too busy ?

I totally understand what your saying when you coin the phrase “a way of life”. its just getting yourself into a routine eh.

We’re just getting used to it all to be honest. We don’t have one MS nurse - more of a team really I think. ‘Kitty’ likes most of them but one or two seem a bit presumptuous and/or patronising which is annoying but hey ho we can’t all be perfect and in the main they are lovely. You seem amazing - full time carer and parent, wow! I’m juggling my job at the moment, luckily it’s mostly flexible so I can work and care and clean and cook etc.etc. without losing hours. Oh, and train for a triathlon!

There is no way I could work and be her carer at the same time let alone train for a triathalon. I couldn’t walk let alone run lol. Our m.s. nurse as i said didnt see us for a year . She is only getting things put in place as she is leaving her position early retirement. We were suppose to get a review every month or so but it has been a year but she had got all the equipment here now so i cant knock her for that.

once you both get into a routine you find its as normal to you as breathing is. It took me quite a bit of time to get into this routine but once you get there it is quite simple. I think the idea is not to get complacent otherwise you might slip up or miss out on a few things .

Crikey - I think we have been luckier than you with the MS nurse situation! Great advice about not being complacent and getting into a routine - I think you’re right, it should just become perfectly ‘normal’ - interestingly it was only when we went for the PIP assessment that I realised just how much we have already just got used to doing things differently and how much support is actually needed on a daily basis. Glad you have got what you need eventually, that must be a bit of a relief at least!