Parenthood and MS

Everyday living
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Dear all,

This is my first post on this or any other forum. I am newly diagnosed with CIS/probable MS (MRI showed lesions disseminated in space but not time, although that is expected to come with a follow-up MRI in a few months). At present, ironically given the gravity of the diagnosis, I have virtually no symptoms at all. I only went to the doctors as the (extremely minor) tingling I had, along with a slightly unusual feeling big toe, was all one sided which made me a little worried.

Anyway, the diagnosis has turned my world upside down. I am about to become a father for the first time and I can’t stop thinking about the impact this may have on my ability to be a parent (and husband). Being a parent and husband means everything to me - I define myself and my value as a person in terms of how good a father and husband I can be and just the thought that this will make me a lesser able parent/husband is, literally, breaking my heart. I was so excited about being a father I almost can’t describe it and I feel that joy has been stolen from me by this. All my dreams of playing outside with my kids, taking them on holidays, and just giving them the best childhood imaginable have suddenly been shattered and I’m really struggling to cope. What if I can’t work and provide for my family? What if we can’t do activities as a family because of me? What if I’m forced to sit on the sidelines whilst my family have to get on with things without me? It is, in some sense, playing with my mind even more because of the fact I currently have so few symptoms - I can’t begin imagine how I could feel that would make me possibly need to give up work/not be able to do the things I want with my family, but deal with the prospect at the same time. I know that is going to sound insensitive to people currently dealing with severe symptoms, and I’m sorry, but it is just the reality of where I am right now.

I flit between trying so hard to be positive, reassuring myself that many people have a relatively mild disease course and that, even if not, it won’t stop me giving my family the life they deserve, to reading things, including on sites such as this and the MS Trust site, talking about ‘young carers’, reading quotes from sad children who have lost their innocence and have to look after a parent and are living difficult lives ‘in spite’ of MS etc… I think such children are brave and I’m not saying they have a bad life but it makes me so sad to envisage a future where my children are having to take care of me rather than the other way around - a life robbed of the carefree joy and fun they should be experiencing.

Can people provide some perspective to this for me? I can’t talk to my wife at the moment because I’m not willing to burden her with this whilst she is pregnant and I don’t want to take the joy of the current situation away from her as well as from me. I’m aware I’m pretty raw having just been diagnosed and am probably (I hope) letting my mind run away with me. Stories from parents - Mums or Dads - whose MS doesn’t stop them being the parent they always wanted to be, activities they do as a ‘normal’ family, whose MS isn’t a burden on their children, would really help me out of a difficult place right now. If I do progress to more disabling symptoms when my children are adult, I can live with that, but I need to give my children a childhood first…

Thanks,

James

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Hi James It may be “your” ms but your wife plays a vital art. Shutting her out will not only increase your stress, but hers. Don’t let your mind go off on one nd don’t “google” your symptoms. I did this and in hind site (wonderful thing) I hould not have done. I have 5 kids and even though I have been dx, got rid of a shrink “helping” the quick diagnosis, can’t walk unaided, I sort of play footie with my son, help my daughters with their work. It’s hard. Just take it easy and live your life. DON’T LET MS STOP IT. Enjoy the pregnancy

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Hey James :slight_smile:

Firstly CONGRATULATIONS!!

Secondly, I’ll tell you my story… I am 28. became a first time Mom 5 months ago to a beautiful baby boy. My MS symptoms began when i was 12 weeks pregnant and I was diagnosed at 35 weeks prregnant. My symptoms and path were (and still are) very aggressive, Since my symptoms began they have never gone… I had (and still have) numbness from my feet to my belly, numb hands, weak right leg making walking hard and major balance issues meaning i wobble and stumble all the time (luckily havent hit the floor yet but came close a few times! lol)

However…

…despite everything i refuse to let it be a stumbling block to being a great Mom! of course being a first time mom, its not been without its challenges, and the MS doesnt exactly help! But, i can still do it! Especially at this time when they are babies… when he looks at you adoringly cause you pulled a funny face, or he thinks your the best parent in the world because you tickled his nose. The little things are the biggest thing when they are young. And even a little further down the line… a 2 year old is going to appreciate so much more that you sat on the floor and played with him and his toys for an hour, than the fact that hes whisked off to a beach somewhere exotic… so, even though it feels like we cant provide so much, we are able to give MORE than we’ll ever know or understand!

A BIG thing I find is not thinking too much into the future. More time spent worrying about later, is more time stolen from NOW. Take each day as it comes and accept each challenge as it arrives. I figure theres no point being depressed and upset about what MIGHT happen, and not just enjoying my family and having fun with my baby boy, and then something does get worse later, and then I CANT enjoy things as much, and realising Ive wasted all the time I SHOULD have been using positively.

Another BIG thing, I know you mention your wife is pregnant, but if you can get things a little straighter in your own mind and share your worries with her, it may make things a lot better for you and for her…feeling a little shaken by your diagnosis but you are dealing with it, and dont want her to worry… you dont want to run the risk of letting yourself become distant and your wife feeling like she is being left out of something and that you cant talk to her. Or even if you let her know your f If theres other women that feel different please tell us what you think, but me personally I like to know my husband can talk to me anytime about things and we can work through them together as a family. And overall it only makes us stronger as a family.

As you mentioned your current diagnosis is CIS… so its possible this may go and you may never have an issue again.

BUT… if it IS MS… there are many treatment options available that you can look to should it come to it, and a lot of support available through MS teams.

On the parent side, there are organisations such as Home start and Sure start who can help, and CAB who can offer advice.

MS isnt the END… it might require a few adjustments here or there, but overall you can still be a great Dad! :slight_smile:

Hope i havent rambled too much and Ive been of some kind of help. If you want to chat about anything or ask me anything your more than welcome to PM me.

Mrs P :slight_smile:

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Sorry should have been “tell her you are feeling a little shaken…”

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Hi Mrs P Nice one, says it all Mike

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Lol Hey mike… thanks :slight_smile:

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Hi MrsP Been there with kids eldest 22 -youngest 7 -3 between, Mike x

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Thanks both. It is nice to hear from fellow parents. I understand what you mean about my wife. She’s not totally in the dark - she knows I’m not doing great with the situation but that I’m dealing with it (or trying to!) in my own way. I just don’t want her to be my crutch and for me to wallow around her - and to take away her joy of becoming a mother.

Are there any other parents on here who can share their stories? Anyone who has parented children through to adulthood with MS who can share their (hopefully!) positive tales of fun family times in spite of MS - it can just look so bleak at times at this point…