Married to MS

Those of us of a geeky nature can be an odd bunch. We tend not to look after ourselves particularly well. In my case, I wonder if all the hours of playing Elder Scrolls has led me to believe that I can magically heal myself and therefore I don’t need to make much of an effort. 

I have played a lot of Elder Scrolls, so it is a possibility. (I’m actually listening to the soundtrack as I write, it’s my work music!)

Regardless, self-care is not my strong point and it’s not a strong point for a lot of people I talk with. We forever put the needs of others before our own, or sometimes just ignore our needs altogether. If you’re like me, you’ll happily take a 60/40 relationship. 

And that’s not always a bad thing. 

But what happens when the person you share your life with gets ill and can’t even put in the 40%. What happens when that relationship becomes 90/10? And 95/5 on bad days?

That’s what happened to me. So I thought I’d share some ways I’ve made sure I can look after myself and my wife. You see, shortly after we got married my wife was diagnosed with Multiple Sclerosis (MS). And, as it does, it has gradually got worse. 

You, Me, and MS

The way MS affects people can differ wildly from person to person and my wife is hit hardest with fatigue. There are days she will get up at 11.30am and go back to bed at 1.30pm. Get up again at 4.30pm and hit the sack again at 6.30pm for the night. 

This is hard to handle. And for the longest time, I handled it badly. I’d work 12-14 hours a day, so she didn’t have to work at all, plough through all the housework when I got home, and live off 4/5 hours sleep. I would constantly sacrifice my own happiness so I could jump at her every whim. I should add here, this was all my doing, not my wife’s.

I would also struggle because the home was always negative. My wife was usually downtrodden and lacklustre, and my stepson has his own set of problems. So I’d take it upon myself to be the positive one. Making everyone else happy was my responsibility. 

Until it all got too much and I couldn’t do it anymore. 

Necessary Changes

Things went wrong, quite dramatically – another story for another day – but changes were made and here is how I handle things now. 

Firstly, I don’t try to meet my wife’s 10%. I cannot function when I’m putting 90% into our relationship and home. The 90/10 principle went out of the window, now it’s generally 70/10. We accept that there are areas that will be lacking. Afterall there are only so many plates you can spin at once. 

Some days the kitchen goes untidied, but that allows my social media to be on fire. There are days when we don’t really talk, but we’ll have great sex. Days when I don’t play video games, but I work a few extra hours. 

I think of it as playing Skyrim using light armour. I’ll struggle with the fights, but ask me to sneak or pickpocket and I’ll nail it!

What we’ve Learned

The biggest thing we have changed is our communication. When my wife is having a rough day, she’ll say something like: “Today’s hard Terry, pretend I’m not here and look after yourself.” Other times she’ll say: “I don’t have much energy today, so I can do some jobs and go back to bed. Or you can do the jobs and we can have some fun.”

In some ways, those conversations sound quite callous, but they are exactly what we need. My wife is prioritising herself, but also accommodating me. The same applies for me. I will always look after my wife. She is my world, but if I know she has no energy and is going to be in bed all day, I can plan my day very differently. 

It is tough living with someone who has MS, or any illness. I would imagine it’s even tougher being the one to have the illness. But we need to look after ourselves too. If you spin too many plates at any one time eventually one – or more – will smash.