How do I explain that I can't remember being lower than a 4, and I don't start showing discomfort until 6, and dont cry until an 8? How do I explain that my shoulder is a 3, but my hips and knees are at 7 and my ankles at 4? How do i explain the frequency of migraines when they can come on without warning, sneaking up on me like a sunrise when you're inside with the curtains drawn. How do you explain the sensitivity to light, sound, and touch?

How do I tell a doctor that I've had an episode where everything feels slow, and my mouth feels strange, like a muscle I've never used to form words, and my brain is just as slow.

How do I explain that dislocating my shoulder isn't as painful as the deep ache I feel for days before and after it happens? How do I tell them how afraid I am of not being able to catch my breath again, or how embarrassing it is to collapse in front of people, not knowing how many hours it will take to get better. Or how I can feel th instability in my hips, knees, ankles, shoulders, and hands?

How do I tell people that I don't know if I will live to see 45, and if I do what state my body will be in then? I'm almost 32 and already have to use a cane. How long before I need a wheelchair?

There are days where I can put all this aside and almost forget, and just live in the moment. Then there's days like today where it all feels so heavy, and it almost feels like a physical weight dragging me down. I don't know if it's the physical chronic pain thats burrowed deep in my muscles and bones, or if I'm still grieving the loss of a "normal" life. How many days a month am I allowed to feel sorry for myself? Can I horde the grief like vouchers for a free ice cream and spend them all in the same week?

I've got more bad days than good, physically speaking, but I've also got more good mental health days than bad. I feel too old and look too young for this.

Edit: To put things into perspective: I have hEDS, POTS, Dystonia, tourrettes, Complex Regional Pain Syndrome, Essential Tremors, IBS, and a number of other diagnoses.