Hi. I’m a newbie here and not too sure what to say. My diagnosis came as a shock a few weeks ago as it was the last thing I was expecting. After 18 months of being unwell and fighting the consultants diagnosis of migraines I finally know why ive been so unwell. I’m mixed with relief that I’m not going insane… and worry as I have no idea what to expect going forward. I was given the diagnosis and not much else other than specialist nurses would contact me to arrange to being treatment. I dont think it has fully sank in yet as I’ve not really had anyone to talk to me about it and we don’t talk about it at home because we’re not telling my two kids. Anyway, it’s good get my feelings down somewhere, sorry for the rambling! Hopefully everyone is safe and as healthy and you can be. Look forward to speaking to some of you. Have a fab day.
We all recognise what you’re going through. First you need to internalise and process the news before you can share with others. I chose not to tell my kids until it was obviously not something that could be explained away. Also didn’t tell my Dad as we’d just lost my Mum. Kids are very resilient and live in the moment: you could give them the worst news ever and 10 minutes later they could be asking what’s for tea?
Hi there and welcome to who understand everything you are going through.
Getting a diagnosis of MS is a bombshell. Depending on the type of MS you have, there is an array of treatments. Some are so good , they slow or even halt progression. Your MS nurse will discuss these with you.
How old are your children? Once you have mulled it all over yourself, it would be a good idea to tell them. Otherwise they will wonder what’s wrong when you might be having a bad day.
The MS Society do a selection of leaflets, some for children, which could be helpful to all of you. Have a look at the list.
Hi there, yeah it certainly was a bombshell. Last thing I expected but not as bad as some of the things that were going through my head. Really good to see the stories and advice shared on here from you all. It’s giving me some comfort while I wait for the nurses to contact me. Its good to have somewhere I can go to ask questions as to be honest I’m pretty clueless. I was given my diagnosis and shooed out the door.
My kids are 10 and 16. It’s my 10 year old I’m more concerned about. He’s a soft little soul and if I don’t need him to worry if i can avoid it. He knows I’ve been feeling unwell but while I can wave it off I’d like to keep doing so. It’s good to know that there’s support out there for the children though for when it comes time to fill him in.
Do you have any pearls of wisdom I’ll find useful going forward? Anything you have found useful in an aspect of your MS journey?
Hi again Nat.
Just to fill you in a bit with my story. I’ve had MS 24 years but only got diagnosed 2 years ago…it was a minefield of a journey.
I have a rare spinal form of Primary Progressive MS…never had any helpful meds to slow it down. It was very progressive.
Best advice I can offer is;
get good quality rest when you can
dont book activities too close together…you’ll need those rest days
accept help when it is offered
dont bother trying to fight the diagnosis…it is what it is
try to find a gentle way to introduce MS to your son…it has to be done sooner or later sweetheart.
This group is supportive and kind. Keep talking to us.
I was diagnosed at 23 (17 years ago) since then ive been lucky enough to have 2 boys (4&5). They know mummy has ‘the alphabet’ and needs help sometimes and it makes her have a poorly leg.
The advice i would give…
Dont be stubborn its ok to rest
Pace yourself, little and often,
Small changes make big differences
You know if your not well - trust yourself.
Allow yourself to greive for the you of before, but beleive that just as hair turns grey, ms will now be a part of your story
I teally hope that your ok & know we are here if your down, confused or have success to share.