My first Ehlers-Danlos Syndrome meetup was great! There were only five of us which seems like not many people, but it was plenty of new faces for my first time. The ladies were all so lovely. We chatted away and drank coffee for two hours and then J drove me home. Debbie who is the Aberdeen area co-ordinator is full of knowledge and kindness – my Granny would call her “a wee treasure” and so she is!
On Saturday night there was zero chance of me cooking so we drove across the road for Tex-Mex and then came home and watched some crappy film that was on TV. I have never felt as sore and exhausted as I did last night. It was awful. Today hasn’t been much better. I’ve not washed, brushed my teeth or put on real clothes today. J made lunch and got a sneaky fish and chips for dinner which has actually perked me up a wee bit – even if I do feel guilty now.
On the subject of food, I’m going to try cutting right down on dairy, spicy food, onions and tomatoes and sweeties and see if it helps my acid reflux. Despite being on omeprazole twice a day, I still constantly feel like I have a lump of potato in my throat and mucus stuck between my nose and throat that I cannot shift. This results in some really sexy, and non-productive throat clearing. So I’ve done an online supermarket shop that should arrive tomorrow. It’ll be interesting to see if a change in diet means a change in my symptoms. I’m not getting my hopes up, I think the valve into my stomach just goes a bit freestyle at times, a bit like the rest of the collagen in my body!
On Saturday morning I got a letter through from gynaecology saying that they have heard from my consultant and will send me an outpatient appointment soon. If my only problem was my hormone imbalance then I’d be 100% okay with waiting it out but because progesterone seems to have a huge impact on the laxity of joints, it’s not practical for me to play the hormone lottery on top of having EDS. A lot of women with EDS brace their joints and plan activities differently depending on their cycle but because I don’t have a cycle, I have no idea if I’m coming or going. I’m really hoping that gynaecology understand this and don’t think I’m just complaining about the unpleasant symptoms of having haywire hormones – which really suck, by the way!
Oh, and I wrote a thing for The Mighty, which is cool. If that’s why you’ve stopped by then thanks!