My boyfriend and I have been together for 2 very happy years, and hopefully will be for the long run. I told him about my diagnosis very early on, as I knew I was falling for him and wanted to be as open as I could be. We live together now - he is so supportive, and has done his best to research as much as he can on ways to support me and to understand MS.
We don’t talk about it all the time as I’m usually pretty positive about things, and have been determined to not let MS become ‘who’ I am. But, I’ve been struggling lately and feel like MS is dominating my whole life.
I’m currently going through a relapse, and it’s the first time I’ve dealt with one so significant. I have been signed off work since March - since then we’ve had to cancel various plans, and I’ve been in a bad place mentally and physically. He is working full time and often has to do the food shop/cooking etc after work as I just don’t have the energy. I know I can’t help it I but I feel so guilty. I’m also waiting on MRI results which again is a nerve wracking time.
We are very open with eachother. Recently he has confided that he is struggling, mainly because he hates not being able to make me better. But also that our plans for the future (children and raising a family) will obviously be different to the norm. I appreciate his honesty and I welcome these discussions - our partners are not superheroes either and need that support.
Does anyone have any advice on where to signpost him or perhaps an online support group for partners? He’s adamant that he’s not saying he doesn’t want a future with me - just that he’s on his own acceptance journey and wants to be there for me as best as he can.
Hope this makes sense. I don’t half tend to waffle on my posts. It’s cheaper than therapy haha.
Is there a local group you could both go to? I go to one in Cornwall and its great, people with ms and their partners are welcolme and your partner could see and meet others with ms and see how they manage.
As to the shopping - could you do online and get it delivered? And when you feel well batch bake (lasagna etc) and freeze so all you need to do is microwave them
You’re fortunate, Amy - you’ve got a good one. He’s talking to you and opening up about his feelings and doing his best to understand. The time to worry is if he stops sharing with you.
Thank you, I will look into that. Yes may have to think about online shopping more. Weirdly, the food shop is something we like to do together (I’m sure that will fade in time!) so I do actually like going. Hopefully this relapse settles down soon so I’m more able again. Thanks for your reply x
Ahh thanks you GCCK. I agree!
It’s hard to talk but we are very open. I’ve also told him there’s no shame in confiding in a friend if the worries are ‘about’ me and he doesn’t want to tell me. We all need to vent sometimes
I’m glad he’s been honest with me. It’s hard for our partners/families too x
Hi Amy, my hubby has been my primary carer for over 20 years.
If you get as you need help with personal care, think hard re getting carers in. Hubby wouldnt let me for first 11 years and it caused ructions.
Thank you, it’s definitely something I’ll keep in mind for the future if the need ever does come around.
It’s definitely hard, and has caused upset for us both. Life is a crazy journey isn’t it xx
He does sound like one of the good guys. Good communication is vital, you both need to be able to express when things are tough. In my opinion it is important to you both have some “me” time. I try to ensure that my wife gets to spend time with people who can go for a proper walk without having to make specific MS concessions.
If things get awkward I try to imagine ‘if the roles were reversed’ which can be a useful trick.
MS is a total git for both of you (and your friends and family) but with luck we can muddle our way through.
Wishing you both all the best.
Thank you so much for the reply and the uplifting words Mick. It’s so good to have this support network online - as much as I wish we didn’t all have to go through it of course!