Hi! I joined this group as I was feeling a little low. I don’t have the same burden of responsibility as many (probably the majority) of you here but I just need an outlet!. My husband has Wegner’s Granulomatosis, or officially known as Granulomatosis with Polyangiitis. It’s a form of vasulittis. He isn’t totally incapacitated by it but it is a disease that rules our lives. I struggle with it as I am most certainly not a nurse, I don’t have the patience or knowledge but I think my hubby thinks I do!!! I am his official carer. He does depend on me to manage his numerous hospital and doctor’s appointments, his medication and his symptoms. Am I being selfish when I get frustrated because he can’t deal with these things himself? I just feel he relies on me too much. Do you think I should be more firm in making him manage his own condition more instead of ‘mothering’ him? Or am I being the selfish one? I’m struggling with the burden of this. Help!!!
How would he do all this without you?
Maybe it’s time you had someone else involved to get to know him and your household, who can take him to appointments and give you some time off? How old are you both?
Hi Lynn,
Welcome to the forum!
You’re not alone, we are sure that many on here will understand exactly how you feel and offer support. It sounds like you have a lot going on right now and its important that you take care of your own overall well-being too.
Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.
You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK
Share and Learn: Share and Learn | Carers UK
Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email
Best wishes
Lucy.