What, we asked ourselves, would have been helpful to hear before we began to get better? Because, to varying degrees, we have all gotten better.
Of course this ‘getting better’ thing is both relative and taking a frustrating amount of time (a statement of such profound understatement that just to type it leaves us gasping). It has involved some massive lifestyle shifts; in what we eat, in our sleeping, in our level of self-care and clean living, in how hard we can realistically expect to push ourselves before crashing and burning out. It has dragged us through a variety of bizarre treatments & medications & cross-border health-care shopping. And while some of it is not necessarily bad… it is very different from how it was before. And it has not been, and very often continues to not be, easy.
We have all been deep it in; with body spasms and painful joints and numbed out legs and crushing fatigue and brain fog that made remembering our own names and birth dates a daily triumph. For all of us, it’s stressed our friendships and relationships, forced us to navigate an often entirely unfriendly medical system, interfered with our work and our family life, cost us serious out-of-pocket coin, and generally been a traumatic experience.
Which is where talking to other people has helped us A LOT. And why, after lucking into some bright lights in such dark moments, it feels only fair to share the wealth.
Because all through it, one of the small pleasures of actually having a diagnosis rather than just 10,000 seemingly unrelated symptoms, and despite the joylessness of the treatment plan; ‘no drinking, no gluten, no sugar, no yeast, take some terrible medication which will, at least initially, make you feel 100% worse, and don’t forget to be in bed by 10!,’ was occasionally being able to make each other laugh.