Good morning im new to this group i,m a carer of my husband who was diagnosed with ms in 2020 im just finding it hard at the minute as it seems to be taking more from him each day i just wish i could do something to help him😢
Hello there😊
I think being the partner of somebody with MS can be incredibly isolating, and it can be really easy to take you for granted too because we can get so wrapped up in our own situation. Something that I and my ex used to find incredibly supportive and important was a night out once a month that was organised through the ms society. It was only a little bar in town, on a Tuesday night, we called it Pizza and a pint Night. What was amazing about it was that the non-ms people could chat to each other and realise that the MSers weren’t as unique as it felt, and actually just having a good bitch about us brought some light relief. It was also good for those of us with MS, because we could compare Notes about symptoms and foibles that made us feel less freakish. It made a massive difference.
Check if there is a group near you who do something similar if you fancy it, and if they don’t maybe ask them or help them to set one up. I’m lucky because I live in a city and so we were all within four or 5 miles of the bar, it’s more of a commitment if there’s more distance involved.
I think the key is making sure that you’ve got someone to talk to as well, it can be a really isolating condition for both the pwMS and the people around them so don’t underestimate how much talking can help. I know the ms society helpline has some great people on it, and they can be a great place to start. Not all of the volunteers have got ms but they’ve all got good ears!
Hello . I’m the one with MS in this household but my thoughts are that as @cymroglyn suggests have a look at local groups in you area - check the section called ‘support and community ‘ on the Society’s website . I’ve not been to my local group but they seem to have regular coffee and catch ups, cocktail and dinner nights , and ‘cocktail nights ‘ . I think other local groups organise virtual meet ups, exercise meet ups and other things.
More generally, yes unfortunately MS does ‘take it out of you. Can I ask if there are things in particular that your husband is experiencing? There are bound to be people on the Forum who are also experiencing it and might have tips etc to help including myself.
His walking is bad now and he uses a wheelchair which is hard work we live on a hill and trying to push 14 stone up it takes it out of me i have to ask my teenagers to take over but the newest symptom he has he really cant explain it proper but hes struggling to cough hes in so much pain when he coughs and theres nothing i can do but he says its a pain hes never experienced before and he says his spine hurts nobody can give us answers just take more painkillers!