Originally Posted by LIT LOVE

My son will be graduating from college next year and my being ill has had a profound effect on him. In hindsight, it was less about what he missed and more about how difficult it was to live with someone that was profoundly miserable and living with prolonged, severe pain for a number of years. But at the time, I was very concerned about these same issues.

Your relationship with him must change and adapt because you are a different person. Accepting that your body has certain limitations (until/unless you achieve remission) is key. Dealing with your own mental health has to be a priority, for your children's sake! The guilt and depression are likely going to be bigger issues long term than missing out on certain activities. I've learned it isn't "selfish" to make my health a priority, because when I don't those around me also experience the aftermath of me failing to do so! Even when I try my best to hide it, my closest family members can still tell.
The first few years after developing RSD/CRPS were in some ways easier for both me and my family. It was at the point that I started accepting that my health might not improve that things got tougher, as well as the sheer exhaustion of not sleeping well for so long, and just a general depletion of mental and physical reserves. Everyone reacts differently, you might be going through your rough patch now, or it might get worse somewhere down the line. Please tell your docs and ask for additional help for you and your family's sake. I think those that are most stoic actually have the hardest time when these issues come up

I'm a better parent when my pain is controlled by both curbing my activities and by taking pain medication. My son's best friend's mother recently passed away. She was wheelchair bound and had limited use of her hands for much of his life and yet was one of the best mother's and wives I've ever met, and was a constant inspiration to me. (She and I suspected the boys gravitated towards one another because they had so much in common--including having a disabled parent.)


Children often can't articulate or even confuse their feelings. I think it's really important for them to have someone to talk to other than family. This can be a counselor, or a priest or minister, etc. I really regret I didn't take my son to a therapist when he was a teenager. He kept denying my health issues had any effect on him, now he admits that of course things were traumatic for him, but he did turn to a priest for some informal help at the time without letting me know.

Enjoy them while they're with you, they leave the nest much too soon.