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Husband of MS suffer needing help

Hi,

My wife (33) was recently diagnosed with MS. She is terrified as am
I, we have two small children and very little family support after losing my dad this year.
I’m scared to read to much because it’s easier to function day to day in denial.
Looking for anyone who can perhaps offer some advice how I can help her? I feel useless and their is nothing I can do to help.
I would give anything to take this for her.

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Hello and welcome, glad you found us. You will find the forums full of people who have been where you and your wife are now. It really is horrible when it’s all new and frightening and you just don’t know what to expect.

There’s two ways of approaching what is ahead. You can read up on MS and arm yourself with loads of knowledge or you can back away from it, carry on as you were as much as possible and deal with any problems as and when they crop up. I did the latter for years. Stayed firmly in denial, carried on working, did a degree with the OU, and best of all kept life for my young son as normal as we could. And I’d do it that way again, I didn’t want to read lots of scary stuff or be around people with MS, I wanted to pretend it wasn’t happening.

This was all over twenty years ago and I can look back on those early years as mostly happy. I was lucky that MS hardly affected me for years and I know not everybody is as fortunate but the reason for writing this is to say that you both have to find what suits you best, your family and lifestyle. Eventually I made many friends with MS through this site and realised it was a lot less terrifying but at the beginning… totally different matter!

I would say though that if your wife has been diagnosed with relapsing/remitting MS it is important to get on DMDs as soon as possible as that will give her the best chance of keeping things at bay.

Wishing you both the very best of luck.

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Sorry for both of you. Not many people appreciate the impact of MS (or any other life changing condition) on partners / spouses. Denial as a strategy has pros and cons but as Val says it is important to get on any theraputic medications ASAP. They can reduce frequency and severity of impact damage from relapses. Once the (permanent) damage is done there may be regrets about not acting sooner.
Feeling useless in the face of these circumstances is also normal, there are many things you can do nothing about (so don’t stress) but there are always things you can do. Be available, empathise, don’t judge. You might be unaware of just how much you are already doing. You both need to communicate and also be kind to yourselves. (this might sound naff but will extend your ability to support each other. I will shut up before I disappear up my own exhaust pipe. All the best
Mick

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Hi,
Sorry to hear about your wife. A diagnosis is always a shock, maybe more for family and friends if they didn’t understand the symptoms.
MS is such a strange condition, no two people have the same symptoms so reading up about symptoms before she gets them is probably not a good idea anyway.
This website is great for info.

I’m with Val, I just kept on going and enjoying life. I was lucky, very slow progression.
My mobility started to deteriorate, then I needed equipment.
Just support your wife as you always have, maybe she’ll ask when she needs help.
Take care
Jen

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If you weren’t expecting the diagnosis, of course it’s a shock. Your mind automatically goes to the worst-case scenarios. However, it’s a very slow disease for most of us.

Get started on the DMT’s as soon as you can, and then just sit back and live your life normally. Everything really will fall into place, and MS will just be one more thing you have to deal with every day, like stepping on Legos and fighting the children into bed.

There may eventually be things that your wife can no longer do – probably minor things like cancelling that family hike up Kilimanjaro or no longer joining you for that swim across the English Channel – so understand that she’s not being difficult or trying to spoil your fun; she just can’t do those things any more.

Mostly, once the shock wears off and the reality sets in, you’ll see that your lives haven’t really changed.

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Hi, it’s ok to feel scared. I feel scared a lot of the time, thinking about how MS has changed many aspects of my life. But, my partner supports me in so many ways, as I’m sure you will support your wife. Listen to her, talk about what you are both worried about, what you are scared about. Share your thoughts and together you will face the future.

Joining the forum is a positive step. We are here to help if we can. You are not alone.

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Sorry to hear your news. You don’t have to soak it up all in a day, take time to absorb the news and support each other

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Thank you for your words, it really does help talking.
I don’t think my wife is in the same head space and is still so scared.
I’m glad your getting support as this thing is the most scared we have ever been. Their doesn’t seem to be a lot of help or knowledge in the medical community about all this.

Thanks for those words that really gives me some hope.
We just want to live a full life, we’re good hard working people who have never done anyone any harm it just feels so cruel.

Hi Jen,

Thank you for your kind words. Your experiance sounds very much her fear as she is such a hands on mum.
I would give anything to take this for her and I feel so useless like I should have the answers to make her feel better.
It’s like we’re grieving for a life that is now over tbh.
I asked the nurse if their were any clinical trials in regards MS because it’s not something you see advertised she wasn’t aware.
I feel like it’s one of those illnesses they know very little about.

Hi,

Thank you for your advice, I have encouraged her to join this site as their is so much knowledge and experience to lean on! Hopefully in time she can.
It may be 6 weeks for her meds to come through which is very disappointing as she has symptoms right now. As you say that is the concern they don’t repair damage so we need use all available preventative measures.
Thanks again for taking the time to write.

Thank you so much for your kind words they mean a lot.
It’s really helping hearing someone who has lived with this for over 20 years.