I have just started a new relationship and I told him early on about my ms, and explained that I am mainly affected by fatigue. It doesn’t generally stop me doing much but it does strike without warning and sometimes I have to skip things.
Anyway, I have realised that I’m not too good at communicating about it, partly because I don’t fully understand/accept it. I was just wondering if anyone has any advice/tips? What would be great would be a leaflet specifically for boyfriends/girfriends of people with ms fatigue. The MS Society essentials fatigue sheet would probably be a bit overkill.
Quite a lot of people find that the “spoon theory” helps to explain fatigue to others in a simple way. You’ll find it easily if you google it. I’m not a massive fan personally because it doesn’t really fit with my own version of fatigue, but perhaps it will help?
Hi Eski, I think using electricity as an example works pretty well. Saying that sometimes the power is turned right down and sometimes the plug is just pulled right out!
Also, when I have the massive loss of energy (plug pulled out) I call it ‘having a meltdown’… most people understand that to a degree.
It’s a very hard thing to explain to anyone. I’ve also used flu to describe it. Most people have had flu and know how rotten and tired it makes them feel.
I would also say it’s very important to allow a partner the freedom to go and do things without you when you’re feeling tired. I know that can be hard sometimes, especially in a new relationship, but expecting a partner to miss out on things because you’re not well is hard on them. If you’re not up to going make a point of telling them to go without you and telling them you hope they have a good time… and be interested when you next see them… ask what it was like etc. That way there will not be any resentment or guilt on their part.