Hi everyone
I’ve just joined and wanted to introduce myself.
Diagnosed 2 years ago with rrms, was having symptoms since 2015.
Have a husband and 2 kids, 2 dogs, busy life, work 25 hrs a week in the community.
Am very lucky with my job as it doesn’t require me to be on my feet for long periods.
I’m at the beginning of my MS journey, and try to carry on with life as best I can, my main issues include limited mobility, incontinence, pain and fatigue.
Not many know about my ms, only those closest to me, I feel like I haven’t accepted the diagnosis yet, and am not sure how to.
No one gets it, if I say I’m tired, then everyone else at home says they are also tired, I don’t really get any extra help or understanding at home. This is partly my fault for trying to carry on as usual, but that’s my coping mechanism!
I am on kesimpta dmt and this seems to be working well, although I’m still noticing some deterioration and small changes in me.
Sorry for the rant, but ms is so frustrating!
Hi, very few non MSers understand just how bad MS fatigue is.
People feel they are coming out in sympathy when they say they feel tired too.
Perhaps you could explain to those who dont know how you really feel and accept kind offers of help.
Boudsx
Coping mechanisms need to be reviewed regularly to check how well they’re working. If yours is to act like everything’s fine when it isn’t, that’s OK until you’re buckling at the knees, at which point it might be time to think again. As your post implies, that can be hard to do because a coping mechanism is there for a reason and they can be hard to let go of even when they are no longer serving us well. There’s a barrier to get over, often, as we admit to ourselves that we’re not doing as well as we would like. That’s the first task, before we get on to explaining the new facts of life to those around us.