I am very lucky to have very supportive friends and family. My partner is one of my biggest cheerleaders. Unfortunately, I am going through a particularly rough go at the moment: depression, pain, and helplessness. I'm trying my best to stay on top of it and minimize the crazy that comes with chronic pain. But as I work on finding a new way to be, I can tell the process it exhausting. My partner is being as supportive as he can, but I can tell seeing my disease progress(as it does) has taken an emotional toll on him. I was wondering if anyone has any suggestions, knowledge about support groups for family members of people with PsA? Any tips or advice would be greatly appreciated.
It may help to look for Caregiver support groups in your area if he's looking for in-person support. Both of you seeking counseling can be helpful - for us, having someone to vent to about our disease that isn't our significant other can be priceless, and for our partners, having someone to express their concerns, sadness, frustration, and helplessness to can be just as invaluable.
People who care for people with PsA are welcome to post here on this board as well. It's often helpful for those in our lives who support and care for us to ask questions, read about our experiences, and to gain a better understanding of what we go through - and see that it's not all stressful and bad, that there are those of us living with PsA who are on the flip side of coming to terms with the disease and are thriving with PsA, not just coping with it. :)
I purchased the book that is recommended here under book reviews. It was a wealth of information and I have now passed it to one of my sisters to read and then my doctor would like to read it. My plan is to keep passing it around to family so that they can better understand PSA.
My friends, family and wonderful husband have been very supportive. Unfortunately, the ones who don't see me on a daily basis have no idea. I've now had a heart to heart with both of my older sisters. They both work with people with disabilities so they understand, however they are having a hard time with my slow down... I think :-)
Both my husband and son have taken over daily tasks on days that I'm not doing well. On good days I do what I can. I know the extra work has been hard on my husband and I feel guilty for that. My husband made a comment the other day when I told him I feel so guilty for not doing what I use to. He said " I meant what I said, in sickness and health". Communication is important, counselling could be beneficial too.
My appointments with my Rheumatologist are in the City, it's an over night trip every three months. My husband has been attending them with me since day one. I use to feel like he knew more about this disease then me. Thankfully, I've brushed up a lot and am feeling like I am learning more and more each day. This site has been a wonderful support, informative and it helps to know I'm not alone.
I'm finding this is like riding an emotional roller coaster, the slow down when I'm not ready but have no choice and trying to find the right meds that will stop the flares and pain so that I can have a more function life. I keep the faith and try and stay positive, knowing it could always be worse. As my family would say...living in the moment :-)