I guess it is my day to whine. I am on MTX and meloxicam. I do not take my Humera as my sinuses are always full and often infected though I rinse, take mucinex D, and steam. My Rheumy wants me to start an infusion in about a month. Folks, I am so tired of pain and exhaustion. I swim a bit. I eat healthy. I sleep enough. What am I missing? Pain and exhaustion rule my life. I am a 48 year old ADHD mom of 4 girls, middle school teacher, outdoors Montana girl, and now I can not even carry my own groceries or run my own vacuum. I have had sinus surgery…neck fused…hysterectomy…WHAT more can I do? Am I trapped for life? If I quit teaching I lose instance and retirement. AARRGGGGGG!!! I feel like a failure because I used to do it all. Now that the girls are teenagers and will actually remember what I do…I don’t do half of what I did. I just go to my room and lay down. I want to throw parties, chase sports, camp! I want to stay up late playing cards, but I can’t hold cards. So there. I whined. But really, I am hoping someone out there can tell me what I am doing wrong…or what I am missing in order to get a break from pain.
What you can do is teach your teenagers empathy and compassion, as well as the importance of self-care, by not only living with your current limitations, but thriving with your current limitations. Talk to them about all the things you'd love to be doing with them, about your frustration over not being able to do those things with them, and brainstorm together what you CAN do to live your life to the fullest considering your limitations.
Camp in the back yard - they can learn to pitch tents, start a fire (my 12 year old is my go-to person for campfires!), inflate an air mattress for you.
Throw parties, perhaps redefining what a party is: You take care of beverages (ice water, apple cider, a pot of coffee) and invite others to bring potluck dishes, perhaps with a theme (world travel, finger foods, comfort foods, Autumn picnic) ... have your girls decorate and let them each invite a friend for the night as a thank you for helping out. You don't have to meet everyone at the door - ask a friend to do that for you ... you just sit in a central location and chat with everyone who comes by. :) Use humor in the invitation to get across that you miss your friends, but are limited due to your psoriatic arthritis. Call it a Friendly Potluck hosted by the Queen of PsA, whose most redeeming trait at the moment is an ability to sit, listen, laugh for hours on end ... as long as those hours are between 5 and 8pm, as she can't stay up past her bedtime. Throw a game night, where you have an intimate gathering of friends and sit around the table playing games. There are devices that can help you hold cards, card shuffling / dealing devices, etc. (google playing card holder).
Have movie nights with your girls - let them take turns every Friday (or whatever) picking movies and snacks and relax, laugh, and have family time.
Most of all, be honest with yourself, your friends, and your family about how rough of a time you're having. Most people don't realize the reality of our pain and exhaustion. People may surprise you with their support and willingness to understand what you're going through.
I would like to add rent or purchase a motorized scooter to allow you to go and see your sporting events or help with your job. I purhased one and I am now going to all my children's events. I just hook it up to a trailer on the end of my suv and off one goes.
My daughter is 10 years old and sons are 18 and 14. I wish things were different but I can not control this. They help out when the not at practice or out with friends.
I have googled and found lots of wonderful devices to help me out. There are many out there.
Good luck and hang in there!