I didn't need some GET-therapy to get myself worse, I did fine all by myself
Right?! It never ceases to amaze how the 'therapy' the BPS pushes is just plain common sense that we've obviously all tried. I've seen them try to explain this away as in "they tried too hard before they were well" or "they didn't increase gradually enough". It just shows utter contempt for intelligence of the patient. Then they even try to explain POTS as a 'fear' of movement (you know, you stand up and your HR and BP elevates, you're clearly afraid of verticality.)
Does anyone have any tips for lying down? (Yes a real question lol).
In regards to OI issues and M.E pain. I often find it difficult to get comfortable particularly my head and neck, I usually end up dizzy and like Im about to black out just from trying to get into a comfy position.
I have two pillows that really help. The first is relatively firm memory foam and cradles the neck; I always make sure that no matter how many pillows I sleep on, this one is on the top. The second is a tiny, narrow pillow like this:
Maybe a little narrower. When I'm sitting up, I pile all my normal pillows behind my back and put this one right where my neck is. My head is above the top and my shoulders are just barely touching the bottom: Lovely.
One of my early ME symptoms was incredible neck and back of skull pain -- I still have it, but
nothing like it was, then. It came much earlier than the complete collapse that caused me to start really spending time and money to find out what was going on.
I one day awoke in terrible pain
with my head cricked upward off the pillow in mid-air -- maybe to breathe, maybe because the nuchal pain was
just that bad -- and I was somehow asleep like that, with my head held upright off the pillow.
Getting a good pillow with neck support really helped!
I also recommend that, early in the illness, you shouldn't lie totally flat; and you shouldn't lie totally flat when crashed. Prop up on a few pillows at the very least. Just my experience, you sleep better and you feel less ANS strain with heart and breathing. I see others here have noted the same.