There’s this angry lump that starts beneath my ribs and rises up my sternum. Sometimes it reaches my throat and burns my shoulders, other times it just rises and falls reminding me that it’s there, leaving me hoping that it’s not doing too much damage. I sleep propped up at night waking every hour or so to assess whether I need some water, or feel sick. Generally, I’ll just grump about it and go back to sleep as my oesophagus gently smoulders.
This is just one of the many and varied gifts that EDS keeps giving me. Although it’s easy to identify, unlike lots of other things. It’s gastric reflux. There are drugs to help, although they’re not exactly working yet.
Today though, I didn’t need to explain how any of it feels for a couple of hours. There were two women in a coffee shop, sitting in wheelchairs, wrapped up in too many layers for this time of year. Although they’d never met, conversation flowed and symptoms were compared. The people sat next to them raised eyebrows as they talked through hair raising medical procedures and pain levels. After a couple of hours, the effort of talking & laughing and randomly rubbing the bits that were twinging clearly left them both exhausted. And for the first time in months I didn’t feel like a massive fraud. Someone else was describing my body and other people’s reaction to it, but it wasn’t me.
I wouldn’t wish this on anyone, but I can’t put into words how grateful I am to know someone who just gets it. I guess “thank you for reaching out” will have to do.
And next time, it’s my turn to get the cake and coffee 🙂