Posted 1/11/2018 4:04 PM (GMT -5)
Yes, I am to a teenager son. I have friends who are treating for Lyme and trying to heal their kids, like 1000Daisies. I'm in absolute awe of them.
Yesterday DS was going for a blood draw and I was feeling awful from a cold and I told him that he is the strongest person I know - I just have such empathy for everyone suffering from these infections.
As far as handling it myself, it was exhausting the first few years because there were so many ups and downs, research to be done, appts and I was always having to drop things/leave work and go get him. I have 3 part-time jobs and they are pretty flexible so it has worked out. We are blessed in that area because I would have had to quit if I had a full-time job. There are so many economic components to raising kids with chronic illnesses that probably bankrupt many. We have been lucky there.
However, none of what I've dealt with remotely compares to what Lyme patients go through so I don't think about it much. It's just the new reality. What's harder though is knowing what the future holds for him and whether he will stay in remission and so on.
Also it does take a toll on relationships. Luckily his sister is 2 years older and quite mature but I could see how it impacted her. There is less of me left to go around to my spouse and so on. I 'm sure it's the same for all caregivers.