My kids are grown up now.
It's normal in our case to worry about the future. I had signs of POTS, (although no diagnosis until 8 plus years ago when POTS symptoms hit hard at the same time EM surfaced), while my children were little. They are grown now. Looking back I can see all the worry about how I was going to manage was hard on me. No one else. And it served no purpose. Sometimes I'd need a bit of help. But most people need help at some point in their life.
Believe it or not, now I worry about not being able to help my adult children enough. Until I remember I'm just buying into 'mother guilt.' You are obviously a loving parent and no matter what, that's the most important thing for your child,as you know. Don't beat yourself up worrying about what you can and can't do, or what you may not be able to do in the future. As each day passes your child becomes more independent in so many ways. Doing more and more for themselves. It's always important to listen to our kids of course, but they hit the magic age of 5years plus,and the most important thing, I believe, a parent can be doing for their child is listening to them and hearing them and conversing with them. I call it the magic age because it's then that their brains are really seeing the world outside themselves and they are working out how they fit into the world. It's wonderful, imaginative, inventive and exploring time. If it comes to a point that a parent can't be very active with their child (that would be worst case scenario) they still have so much more to offer. Indeed, I think, no, I know, I spent too much time worrying about the state of the home my kids grew up in and worrying about dinner being on the table in time and all that stuff, and that time would have been better spent just doing more talking with them and listening to them. None of us are perfect parents. But being a loving one is the most important thing. And you are that, I can see it.
I've become a 'burden' on my husband. I considered myself a 'burden' and it was like a broken record, the groove playing over and over in my head. I could not see the good things I bought to our relationship. I actually dismissed the good things I offered as not being enough to make up for being a 'burden.' And for nearly the past 10 years I've punished myself mentally for it. Then I realized that punishing myself just made me feel lousy, (that nothing good came from it), and my husband (who is not perfect himself, by the way) would feel dispirited too, as a result. Plus he also started to think of me as a burden and that was mostly because of how I saw myself -- he was following my lead. I may be a 'burden' in that he's the sole breadwinner, but I'm so much more than that. I'm learning that now. I wish I'd realized it earlier.
And I have so many pain relief options still to explore I truly believe there will be something out there for me that will treat this thing effectively, and soon. New ones every day. My sister has a terribly messed up ankle and foot. She has been in extreme pain for years and no drug seemed to help it. She saw the doctor again, a couple of days ago, and she gave her some relatively new medication which has been a 'miracle.' She's walking around on her foot without even a twinge. I think that will happen for us, even the hardest cases. Her experiences has certainly made me feel even more hopeful.