Hi,
Im new to this forum. I have a partner with RRMS and sometimes find it difficult to fully understand what his needs are and how i can help him. I work and can get frustrated when i come home and he has slept all day. We are a young couple, myself only being 31 and him being 36. Some help and advice on how i can help my partner and be more supportive would really help
That sounds tough. Having a partner with a chronic illness can be very wearing. It seems to me very important that both partners know that hte other one is doing his/her best. Even if that best is pretty rubbish. Especially then. No one wants to be running round after His/Her Majesty the Invalid - that’s just a recipe for simmering resentment, punctuated by furious rows.
I’m afraid that means communication, with kindness and without judgement on either side. It’s like any partnership, illness or not - both partners need to know that the other one is pulling his/her weight. Maybe that’s enough to make things livable with and maybe it isn’t - that’s a decision that you will have to face up to. But nothing is going to work well if you come home after a day at work and he’s done nothing and you don’t understand why and he either can’t or won’t explain.
I hesitate to get involved in someone else’s marriage, because it never ends well! But there are so many variables to take into account. I assume he’s not working now, but does he have an income anyway? Or are you the only one earning money? If you’re paying the bills and cleaning the house and cooking the meals and and and, then you’re going to be angry, hurt, and frustrated. If he has a disability income, then he might feel that he’s still contributing to the household and not understand that you need his help with other things.
Is his MS at a point where he’s really that tired, as in the midst of a relapse, or could he be depressed or just lazy? When I’m relapsing, I “sleep all day”, but it also takes a lot of effort to walk to and from the bathroom, let the dog out periodically, heat soup for lunch, and brush my hair. I’m not capable of much else during those times.
Like alison said, communication is the key. He needs to understand that you’re not his mother or maid, and you need to recognize his current limitations. The only way to do that is to discuss what’s happening in both of your lives.
Hi Nimi,
My husband is my ‘carer’ (I’m 37 and he’s 39). The first thing he did, when I was diagnosed was change the food we eat. This has made a huge difference to my symptoms. He gives me tasks to complete, related to my ‘passion’ and I also have created a ‘blog’ style instagram - invisible_load_of_life which helps me blog how I am feeling, my story and my symptoms. This is an outlet for me and gives me a focus to share and connect with others. Maybe something like that many help him? He is part of this community online?
My husband also lets me sleep when I need to, because the more he tells me to rest, the more support I feel. We also have two little girls, so that doesn’t provide many opportunities to ‘rest’ but I do when I get the chance.
What annoys you about him sleeping all day? Maybe that’s what his body needs on those days.
Make sure he is taking Vitamin D and other vitamins as this will boost his mood and any added fatigue (away from usual MS fatigue).
This is a very supportive community and being recently diagnosed myself, I’ve found comfort in sharing my thoughts and experiences. You are already showing you want to help him, by reaching out… the next level will be building patience and understanding with the pain, exhaustion and overall moods he is experiencing every day.
Is he undergoing any treatment?
I wish you all the best and sending love and strength to you both.
Nin x
My husband was diagnosed with MS first 1998 then officially 2003 with Primary Progressive MS.
From that day I chose as his partner then later his wife to research everything I could about the illness. He didnt want to do that, but me being me, wanted to be prepared and one step ahead.
Maybe it is a good idea to look at some of these symptoms, and fatigue is one of them. He is not being lazy. Some boroughs also do fatigue management courses which may help him.