My Chronic Pain Journey: More Hospital Appointments

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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1 Response to My Chronic Pain Journey: More Hospital Appointments

  1. Invisibly Me says:

    Oooo that is fantastic about the blood-derived eye drops! Is it hoped then that you’ll continue doing that every every three months with blood donation to get the specialist drops for the forseeable future?

    I’m sorry for the ongoing pain, that really does sound miserable. I count myself lucky for having some benefit with facial pain at least with hardcore anti-inflammatories started about two weeks ago. I requested them because I knew I had widespread autoimmune inflammation, and I had no other idea what was causing the face pain issues. I get blurred vision and eye soreness from Sjogrens but I had kind of hoped that your eye drops could help some of the blurring at least. So it’s not related to that? You think maybe the pain and blurring are part of the same issue? The human body is incredible in its intricacy, but It’s an absolute arsehole when things go pear shaped and you can’t figure out why or there’s no easy solution. I’ll keep my fingers crossed for the pain clinic, maybe they can suggest something to take the edge off a little more while someone else hopefully investigates the problems further.

    Fantastic news about the Echo being clear, hopefully that’s a bit of a relief and some reassurance that all’s well in that regards. I just hope you catch a break in other areas soon. I’ll keep my fingers crossed for you 🙏

    Caz xx

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