Hello, this is my first post. Hopefully in the right bit.
My husband was recently DX with RRMS. I’ve been trying my very best to support him through this difficult and scary time, dealing with the DX and deciding what course of treatment he should go for. He’s currently waiting to start his first DMD.
I understand that it is extremely difficult for him to come to terms with his MS DX and everything that comes with it. I understand that he feels he’s lost his old self. That he worries daily about how he’s going to feel, if he can manage at work. I know he worries unnecessarily about being the sole provider (I’m a full time mum to our 3 children), he also enjoys his work for what it is, so he worries about his ability to continue as he used to.
No matter how reassuring I try to be, he still looks at every situation with such bleakness that I struggle to remain positive. I’ve always been an optimist, even when he had his DX I clung to the thought that the DMD’s available were so much more effective than they used to be. Of course, I’m not the one who has to live with this terrible disease, so I can’t truly know how he feels about it all. I’m glad that he has found a few different groups and pages where he can talk to people about his symptoms and the medicines, but I do sometimes feel like I’m out of the loop. We have always talked and shared everything and now I feel an outsider and I’m sure he feels alone, trapped in the bubble of MS.
His mood swings can be unbearable and a lot of the time the children tend to bare the brunt of his frustrations. I’ve spoken at length with them that it’s not daddies fault and that they need to try their best not to get too upset. But I also want them to be able to tell him how it makes them feel. This is probably the most difficult bit to come to terms with. It’s like switch has been flicked. i can usually tell when he’s reaching his limit as he will be extremely tired, but making him have a lie down isn’t easy. He won’t listen to his body and just take a rest. He’s also not very good at asking for help and tends to struggle on. Maybe I’m not taking enough notice of his needs, but I don’t want him to feel like I’m undermining him. I know he hates the fact he feels useless and I wouldn’t want him thinking I feel he’s a burden; he’s really not.
Trying to remain upbeat and positive is becoming more of a struggle each day, I need to remain positive for my children and my husband. I don’t want to snap because at the moment I’m holding us all together.
Thanks for reading.