I bought a day planner and have been writing everything down. I hate feeling out of sinc with everything!
Same here, but only digital works for me: For health reminders and report my "JayCS's fibro-blog" (it being public as a kind of social control), for appointments my laptop and phone calendars, for self-care (physio and supps) my laptop & phone reminders etc.
Humor helps very much. This has been a long journey for me.
lived with chronic health issues since I was born (spina bifida, club foot, degenerative bone disease)
Oh wow
, but sort of similar - life didn't start out at all "funny", mentally or physically, it was a challenge I mastered to make it that. And the first few months of fibro things that used to make me laugh no longer did, but I made an effort to find things. Keeping up table tennis, however short or bad, has been the best, esp. as we always play outdoors and leave most puddles, sand, (not snow tho, but sometimes ice), never using a wind safe ball - doubles the fun...
just overwhelmed me. I don't want to lose me, or most importantly, I don't want to be a burden on my loved ones. You know?
Yup, getcha. Learning to self-care has allowed/made me find myself, but when fog lays itself over that (or just the feeling: f. it, nothing's helping) I do lose "it" / myself - esp. forgetting to drink, eat, supps.... My wife often then tries to "kick" me up the bum, but that only helps if I can turn that energy jolt back to myself. On the other hand I'm often the one who has to save her from despair - about her own issues as well as being too empathic. Worst case of (not) being a burden tho is for me NOT panicking: Reminds me of going in a roller coaster with my son when little or falling with him in my arms while running. In both cases I was screaming inside, but had to override it so he didn't. With my wife it's when I'm feeling bad, then she starts glooming, so I have to pull myself together and pull her up, without falling myself. Thankfully that's got less, because we've both grown more stable and relaxed in the last year, despite my jab-triggered MCAS disabling my energy considerably. She was getting exasperated about my Chinese acupuncture, as it is a tough treatment for me, so to make sure I've made a chart which proves that it actually has been helping, and how. Same as before she sometimes has thoughts that it's all getting worse and worse and I'll be needing a wheelchair or stair lift and I kept reminding her how bad things were before I found helpful supps & physio. I've even found groin exercises that allow me to get socks, shoes & jeans on quicker. (Wheelchair was only an idea I had, because someone else jab-disabled at work is also in one and managing to do quite a bit. However it's not mainly the walking that's got more strenuous, it's also activities like talking, so I keep to as much "home office" as I can - unofficial, as on sick leave). I can't comfort her much regarding her anger about what the jabs are doing to me, but it's comforting for both of us that I'll be getting an antibody-titre before considering a booster. What also helped unburden her considerably was me going to psychotherapy, even tho I didn't really "need" it, but it helped her let go of feeling "all" the responsibility; and for me it was a nice extra I just wanted to treat myself to.