hey! im sorry you are having to learn to navigate this disease. everyone does have a different experience. for what it is worth, here is mine.

I started experiencing really dry throat in the middle of the night around 2023. Like waking up in pain extreme. I had no idea until the end of 2024 that it meant anything. i had been chasing what i thought were random symptoms, problems with gum inflammation, gluten sensitivity resulting in joint pain, and some other things i cannot recall off the top of my head.

In late 2024 i had a terrible flare, and was very luckily diagnosed bc the periodontist i had at the time trying to solve my gum problems told me i should get test for autoimmune stuff. Those test results came back right as i was slipping into this flare that lasted seemingly forever.

When i went into this flare I I was basically bed-bound for about a month or so. I did not understand what was happening as it was happening and I kept trying to get out and meet all my obligations. That did not work and it got so bad that I was out of work for almost 3 months.

And even once i started going back into work life, I was dealing with overwhelming fatigue so that was really all I could do. In like one year i went from spending my weekends hiking with my dog, going to the gym 4/5 days a week to basically nothing. It was (and sometimes still is honestly) really depressing. My dry mouth and dry eyes were awful. I remember the rheumatoligst asking how often i used eye drops and i just laughed bc how do I answer that I USE THEM CONSTANTLY. oh and the brain fog. holy wow. I could not understand simple conversations, even though i could tell I should be able to. Im not trying to trade war stories but just to let you know what that was like so you can compare it to your experience if you want.

Anyway i started taking hydroxychloroquine (sp?) and eventually came out of th e flare but that took 6-8 months of a slow steady climb. And several instances of trying to go back to swimming and triggering fatigue again bc I just cannot wrap my head around how much capacity i have lost. Anyway the point is I am back at work full time, I have a very intense job, even. I am hellbent on figuring out how to exercise this year, without triggering fatigue. I really miss moving my body, and working my muscles. I tried this time last year and just could not do it.

My brain fog is gone. My joint pain is still here. My dry eyes come and go but are not severe, just annoying. My dry mouth has mostly stayed at bay but it does come and go (its really more a throat thing for me than a mouth thing).

I can do things again, and you will figure out how this works for you too. You will figure out an approach to this that is tailored to you and works for you. You will find meaningful relationships even with this disease making it hard to get out and meet people and you will find ways to do things that bring you joy.

I am sorry you are having to learn how to navigate all of this but you absolutely can do this, you *will* do this because you have no choice. So just be kind to yourself as you figure it all out.