Hey

I developed this when I was 16 and so I also know what it's like to live with this as a teen - it is very difficult, but manageable.

I have been lucky to have the most awesome mates ever who don't care about the wheelchair/ the care I need etc. They can tell when my pain is getting bad and insist on me resting for a couple of minutes. They don't mind me cancelling them or saying that I'm not up to going out of the house - instead they grab popcorn and movies and come over to mine.

the hardest I have found is keeping up with everyone without flaring and with the level of pain- I used to do everything my mates did and then crash for a week or two in a flare. So I started to choose which activies were most importantly to me but that left me enough time for resting etc. (also my mum instigated a rule that either I was home by midnight or I slept in my wheelchair!).

However - hang on in there and things hopefully will improve!!

Take Care

rosie xxxxxxxx