I was recently reminded that while dealing with this disorder, you are never ‘cured’. You are in remission, healthy now, or stable. This was exemplified by a recent minor flare after a 3-year streak.
Support looks differently from family to family, depending on their triggers, severity, resources and more. For us, immediate support looked like lots of therapy, processing and quiet time. We kept up supportive supplements given by our doctor, along with the diet, although I loosened up on being gluten free and dairy free. Those supplements included a TH-1 supplement, omega 3s, a probiotic and cat’s claw. We spent this time cautiously optimistic and enjoying days that just passed by with no chaos. It was a rough adjustment going from constant calamity and strife to normalcy. I’d say it took at LEAST an entire year, possibly more, to unlearn some habits from the chaos. I still held my breath.
Year two looked like going backwards, but in a good way. We slowed down on the supplements as he was getting burnt out anyway. I loosened up on a lot of the things I had to be strict about because they were triggering: specific shows and movies, leaving the house to do things for fun, making plans, eating regular foods. I think it was important at this time to allow my son to be a child and do the things kids do that he missed out on while healing myself. It was not easy. I had protected him from so many seemingly small things that were normal amongst the kids his age. So, finally letting them in was difficult. Things as simple as watching a spooky movie, staying up a little late with a sweet treat or playing a game involving guns. These were all things that previously would cause some kind of episode whether anxiety or rage or panic. So, our year two support looked like me letting my guard down and watching carefully while letting a breath out.
Year three just passed. In that year, we took a wonderful cross-country trip, had sleep overs, visited museums. He has held down a job, made friends, kept up with school work and got his drivers license. He is still homeschooled. This past winter, we were lucky enough to get sick with both flus, covid, two stomach bugs and a regular random cold all between November and January. While he did well with each illness, the cumulative effect led to a minor flare. After discussing with his doctor, since all swabs were negative, she suggested to wait it out and see if it ended with the illness. This isn’t what we usually would have done, but things have changed since we last saw a doctor for a flare. So we waited. Surprisingly, things were mild and quickly resolved.
Support during remission doesn’t always have to look like countertops filled with supplement and medication bottles. Sometimes it is the family support, the mental health support, relationship repair and bonding that was damaged. Sometimes it is catching up on lost time. My son’s battles were during some of the most important formative years of his childhood. From 7-14 he was fighting, so my main goal initially was to make up for that lost time together. I would like to be back on supplements to support his immune system and brain health, but he is still very anti medication (for good reason, I completely understand). So, for now, we continue hanging in there and doing all the things we couldn’t do before while being grateful that we have arrived at a place of normalcy.
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