We Still Love Food | A personal update and a difficult ask
It’s been a long time since we last posted here. Working for ourselves has left us with very little spare time, and my ongoing jaw problems have made it difficult to enjoy so much of the food I love.
Some of you may remember my (much) earlier post about living with jaw problems. Unfortunately, things haven’t improved, and this is a difficult update to share.
I feel hugely anxious about writing this. Asking for help is one of the hardest things I’ve ever had to do, especially in such an exposing, public way. It’s taken me a long time to feel able to share it.
My wonderful sister has set up a GoFundMe to help fund my much-needed jaw surgery. Sadly, I don’t have medical insurance, and the NHS wait for the specialist surgery I need is approximately two years. After living with a chronically painful and dysfunctional jaw for 18 years, I honestly cannot face another two.
I’ve spent thousands of pounds trying pretty much everything over the years, from Botox, acupuncture, osteopathy and massage to various medications, treatments, gadgets and surgery. Unfortunately, nothing has worked long-term, and I’ve now reached the point where I need both jaw joints replaced.
It’s very expensive surgery, as the artificial joints have to be custom-made for my face. The GoFundMe says the target is £18k but it’s actually approx £40k – as they use an automated goal setting (I didn’t know this until now).
I can barely open my mouth, I can’t chew food, and even talking, smiling and laughing hurt. I have to be so careful about socialising because something as simple as a long conversation can leave me in so much pain. It’s exhausting, physically, mentally and emotionally.
Having hypermobile Ehlers-Danlos syndrome (hEDS) adds a whole other layer of complexity, but thankfully I have a highly skilled and very kind surgeon, who knows me and my medical history and is willing to help.
I can’t tell you how uncomfortable I feel asking for financial help, especially when I know everyone has their own worries and expenses. The last thing I want is for anyone to feel pressured or obligated to donate. That’s partly why it’s taken me so long to agree to this.
But the reality is that I need help, and I’ve reached a point where I have to allow myself to accept support.
If you feel able to share the GoFundMe link, that alone would mean so much, you just never know where it might end up.
Thank you for reading and we do hope we can get back to blogging one day. You can still find our musings over on Instagram.
