Hello I’m new to the ms site
I was diagnosed with highly active relapsing remitting ms in January 2020 I have two little girls one is nearly 3 and one is nearly 2, I had lots of symptoms in my 2nd pregnancy and once I had her everything came crashing down I lost my vision on one eye just after Xmas and was admitted into hospital and I have mobility issues and tremors really severe headaches and depression I usually am a very on the go person and usually always very optimistic I was on tecfidera and relapsed again and lost my sight in the other eye and then lockdown happened and only started on mavenclad last month after another mri scan the ms is progressing with new lesions so we opted for mavenclad I don’t have much support apart from my partner and mother inn law but they both work I’m just looking for some advice to keep me motivated I live for my girls and I try my best but lately I’m finding being in pain most days is horrendous I take my nearly 3 year old to nursery every day and try to get as much done as possible but of late I am struggling and I’m feeling really down and so guilty about not getting as much done as I would like I’m now overweight with steroids and all the other medications I’ve been put on and I’ve lost my mojo, I’m struggling mentally and physically but I have to power on for my girls I was just wondering if there are any other mums in the same boat I hate to sound so down but I’m just looking for some advise x
Hey there,
I just wanted to reach out to you and say I’ve read your post and I feel for you. I am a mum of two, albeit mine are older at age 14 and 8 but I’m also struggling to do the day to day stuff that’s needed and I get the guilt. I’m not diagnosed yet so can’t advise regarding your illness and treatment etc but I hope things improve for you soon.
Easy to say and not so easy to take on board, but you shouldn’t feel guilty that you can’t do everything. It’s not your fault you are unwell. You are doing the best you can. Your wee babies know that you love them. That’s the most important thing. Take those hugs at every opportunity.
There’s every chance things will settle down in time. I hope the change of medication helps in that respect. Don’t be scared to ask for help in the meantime.
Winnie x
Hello,
Don’t know if I’ll be much help but wanted to send some virtual hugs and words of support over.
Without MS, bringing up children is exhausting enough so I’d cut yourself some slack. I bet your little ones just see you as the mummy they love and that loves them. Only do what you can and don’t be scared to pop the telly on and enjoy some cbeebies time together while you rest.
Could you maybe have someone pop in once a week to help out with housework? It would make a big difference and take some of the pressure off.
Don’t feel guilty or anything daft like that, your doing your best and I bet you are a fantastic mum.
Give the medication chance to settle things down and believe it won’t always feel this hard xxx
I’m just going to second what everyone else has said. My MS was much slower than yours seems to be, but I did have periods where it was a struggle to do much of anything.
My kids have been adults for many years now, but they grew up understanding that Mum couldn’t run and chase them. We’d curl up together in front of the TV or play board games or put puzzles together. I’d sit on the front steps while they played in the yard.
As they got older, they helped me out as a matter of course – setting the table, folding laundry, putting groceries away. As I got worse by the time they were in their teens, they took over most of the cooking and pet care. My son did the yard work, and my daughter did more of the cleaning. I was working full time, so most of my home time was spent resting. We lived in a very small house at the time (this was post-divorce), so my bed was in the living room, and it worked as our couch. We’d curl up there together to watch movies in the evenings, and even when I had to lay down I could still be in the middle of things.
It’s not easy, but know that your kids are going to love and accept you no matter what. You’re their mum, and even once they realize that you’re different than other mums, it won’t matter to them. Rest as often as you can, and take care of YOURSELF first. You’re the glue that holds the family together.
HI,
Sorry about your MS but glad you found this site.
My 2 daughters were 4 and 3 when I was diagnosed but my MS was very mild.
Like Noras Mum I taught my daughters to be as independent as possible. Clearing the table, dishes in dishwasher, laundry in the basket etc.
Also taught them to cook safely from an early age.
Life with MS is tough and with children even tougher. Someone suggested a home help or cleaner but that costs money.
My local college ask for placements for students doing childcare courses. I had a girl once a week and she’s do any job that the child needed. Worth asking.
Find something that you like doing - reading, knitting and give yourself some ‘me’ time. Save your strength for important things.
Take care
Jen
Hello thanks so much for all your encouraging words and replys I am possibly going to look into get to getting some help in the house once a week maybe a cleaner and could possibly do my ironing I do think that would help some of the stress I’m currently on a vacation with the girls so trying to spend as much fun time with them while I can I really appreciate all your replys Maxine xx