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How to make big life decisions when everything is so different to what you’d imagined

Hello

I’ve been on this MS journey for about 2 years now, finally diagnosed last week with RRMS though I’d known it was coming for a while. This is my first time posting, or in fact reaching out for any kind of support (I really wish I had sooner!).

I have been told that I have very active MS. My consultant wants me to start DMT right away, following a relapse a couple of weeks ago.

I’m very lucky as I am still mobile. However I’m really struggling with having MS, and with making certain life decisions. I was recently promoted at work but this most recent relapse impacted my ability to do my job. Fortunately I now appear to be on the mend but it was a bit of an unpleasant wake up call.

I’m 33, married three years ago. Now was the time when my husband and I had planned on starting a family. I lost my mother two years ago, and don’t have any other family who we could call upon for support. Before my diagnosis that wouldn’t have been a problem, but now I worry that I couldn’t care for a child properly. I’m surrounded by friends with children, or who are falling pregnant.

I know my story is probably similar to many people’s- I just wondered how you cope with trying to make life decisions in the face of such uncertainty? Right now I’m so afraid and upset, I worry that I won’t be able to continue working, that I’ll never be a mother and that I’ll just become a burden to my husband. MS feels incredibly isolating.

Any guidance would really be appreciated. I’m so exhausted with being frightened all the time.

hi jecca

first up, find out which Disease Modifying Drug (DMT) you will be using.

then ask your ms nurse if it is safe for you to get pregnant on it, i know that there is at least one that is.

as far as work is concerned you are covered under the equality act 2010.

the employer has a duty to make “reasonable adjustments”.

also once you have spoken to your employer about making reasonable adjustments you can then apply to Access to Work.

stop being frightened, we are living proof on here that life doesn’t end at diagnosis.

avoid stress because that only makes everything worse.

in fact, you have so much research to do, you won’t have time to be scared!

your husband won’t treat you as a burden, i’m sure you wouldn’t if the roles were reversed.

carole x

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Nothing in life is certain, so you make “big life decisions” with no idea what the future holds. Thats true for whether you have MS or not. Its certainly something to factor in your decision to have a family, but thats for you and hubby to altimately decide.

I think it be helpful to talk to other young mums on here who have MS. i’m not one of em. I got diagnosed when my two were teenagers. Kids cope - with parents who are different! A lot better than we give em credit for.

Hello Jecca

All the other posters are right. Nothing in life is ever certain, for anyone. You can try to do a load of what ifs. Like what if you’d already had children before MS reared it’s ugly head? What if it were your husband and not you? What if you didn’t have MS diagnosed now, but something worse in 10 years time? MND anyone? What if you could choose to have that in 20 years instead of MS now?

Or what if you’d been diagnosed 20 years or more ago, when there were no DMDs? Or even 15 years ago when the choice of DMD was really limited?

So you need to start a good DMD. That will help. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It might help to be familiar with the available drugs. Don’t frighten yourself silly about side effects. Equally, don’t scare yourself about the future.

Then sit down, when it’s all sunken in, with your husband and have a talk about your joint future. Really listen to what he says about how he feels about MS, you, children, the future. And make your decisions together. You might end up taking Lemtrada, which is the nearest thing we have right now to a cure. Not for everyone, but you might be lucky - look for katy79s posts about Lemtrada. She’s a poster child for how successful it can be and write very well on the drug.

Then perhaps you have your children in a couple of years from now instead of immediately?

Best of luck.

Sue

Thank you everyone for your advice. I have been feeling totally overwhelmed lately and struggled to find anyone to talk to but your comments have given me clarity. I tested positive for the JC virus so can’t have Tysabri but I’m hopeful I can start on another DMT soon. I will spend more time on this forum, it’s so good to read about people who have this disease but who don’t let it hold them back- my aim is to be like that! Positive pants are firmly on :slight_smile:

Jecca,

Feeling overwhelmed is not unusual, I suggest a couple of things.

1: Break issues up into more manageable chunks.

2: Consider things from an external perspective. IE what would you advise your best friend under the same circumstances.

and keep open lines of honest communication with your family, you wont do anyone any favours by not saying when you feel rough.

Good luck with getting the right DMD and support to keep you being the best you can be.

Mick

Hi,

I’d just like to add my name to those offering support and understanding.

Don’t put your life on hold solely because you are going to have the occasional bad day. You still have a life to live, although not exactly the same one you were planning for.

Regards,

Anthony

Hi Jecca,

Typed a long reply yesterday that disappeared!

Good advice from others.

I had children before diagnosis. They were 3 and 4 when diagnosed but as symptoms not visible I didn’t tell them, or friends until 10 years later.

What I did do was make my girls as independent as possible from a very young age due to not knowing how my MS would develop. Things like setting the table, clearing, making beds, doing laundry, even making meals etc, More skills as they got older. Friends were so impressed with their skills, not knowing my reasoning behind teaching them.

Do what you think is right for you and your husband and live your life and have fun.

Keep well,

Jen x