I would normally share my Chronic Voice Link-Up blog post today but this month there are no writing prompts because Sheryl is preparing for her Big Christmas Giveaway event, how exciting! I decided to share a quick update on my chronic pain journey instead.
It has been approximately three months since I started the Autologous Eyedrops program delivered by NHS Blood Donation. I attend a specialist blood donor centre in Liverpool once every three months to donate my blood, and it is then processed at a laboratory in Speke to create eyedrops specifically for my use. They contain my blood serum that should naturally be present but isn’t working properly due to my congenital disorder. At least, that is what I deduced from what the doctor told me. It’s a bit complicated. I am happy to report that the serum eyedrops are working well and I was even able to wear makeup without pain recently so that is a huge breakthrough.
My chronic pain is still present, however. I have heaviness in my cheeks just below my eyes, and for about a week recently I was in severe pain with blurred vision and no obvious cause. I had been outside in heavy wind, so I put it down to that. The bright winter sun doesn’t help either and I am the only person still wearing sunglasses on the school run at this time of year. Needs must. The pain drives me crazy and makes me grumpy, which isn’t good for my children, but I cannot help it. I do have a telephone appointment scheduled with a specialist pain clinic based in Liverpool at the end of November, so let’s see what comes of that.
And I finally attended hospital for my ECHO which all seemed clear according to the technician. She seemed confused about why the test had been requested because my heart and chest area look healthy, so for that I am thankful. It relates to my congenital condition and the FOX C2 gene that I carry. There is a small risk of heart defects and my new eye doctor wanted to ensure there was nothing sinister lurking that hadn’t been detected before. It does seem that all my pain and problems centre around the eyes and face. So that’s where we are up to. More hospital appointments, more chasing, more traveling long distances to receive the treatment that I need. Alongside it all my reiki selfcare practice keeps me sane. Have a lovely week, my friends!
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