Chronic Voice Link-up: Blood Donation for Rare Eye Disease Treatment

Welcome to June and our monthly A Chronic Voice blog link-up. Today is my blood donation day to have special eye drops made for my personal use. Read on to find out more!

ACCUMULATING

Today I am accumulating blood! Well, the NHS is. I am visiting a blood donation centre in Liverpool, which is apparently the closest place for me and will take at least an hour to drive there, maybe more depending on traffic. They will take 1 pint of blood, send it to a facility, and have the serum extracted to make eye drops that will hopefully ease the chronic pain I live with because of rare eye disease and severe Dry Eye Syndrome.

HARMONISING

I feel that my life is finally harmonising. Following several years of struggle, I decided to separate from my husband and while it is an ongoing struggle, I feel like it was the right decision. I have worked hard to build my part-time reiki business, Goldstone Reiki, and continue to work as a freelance blogger and author. I managed to spend quality time with my children during the half-term holiday, and even took them to the seaside for a few days. It is all falling into place.

PRIORITISING

Right now, I am prioritising me. For years I put my husband’s needs before my own, all the while struggling along with my rare eye disease and the associated strain on my mental health. Nobody thought to offer help because I appeared to cope so well with everything. There are only a few people in my life that understand how difficult it is to live with a rare congenital disorder and the associated chronic pain. My children understand that I need to look after myself, and they are still young. This is my life, and I need to take charge of it.

CARVING

This year I am carving out time to have fun. We spent most of 2020 in lockdown and the first quarter of 2021 also. Then we were allowed to return to school and work but nothing else. Now we can travel around the UK freely, we can stay in hotels and holiday homes, we can visit museums, indoor entertainment centres and spend time with other people. We need more holidays!

A windy selfie at Morecambe Bay!

TRAINING

I spent the past 4 years training to be a Reiki Master Practitioner and Teacher, so now I am taking a break. I continue to attend group sessions with my teacher and fellow students to deepen our reiki connection and practice the self-care that is important for our health and wellbeing. Later this year I plan to attend training for Karuna Reiki and that should be fun, but right now I need to work on myself and my business.

Chronic Voice Link-Up

I joined the social network for A Chronic Voice because I needed to find people who understand what life is like with chronic illness, people like me. Today I have written a post using the June link-up prompts, to show my experience of living with a chronic pain disorder. Click here to find other blog posts from fellow chronic pain sufferers, or #spoonies as we call ourselves online.

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4 Responses to Chronic Voice Link-up: Blood Donation for Rare Eye Disease Treatment

  1. Rachel says:

    I hope the journey to Liverpool is pleasant! I’ve done many a trip there myself in the past! And I hope the donation is painless (sharp prick only). Fingers crossed that this can get you some respite from the pain once the drops are made.

  2. RaisieBay says:

    You sound very positive and I feel that you have made the right decisions in life, even if it’s been hard. I’m glad you are taking time for yourself and your children and I hope you have a great year with plenty of joy. The blood treatment sounds really interesting. I hope it works well for you and that your journey to Liverpool is good.

    • Thank you. Our journey to Liverpool was fine, but the NHS admin services were atrocious, meaning I ran in circles for an hour before the appointment. They sent us to an empty building, didn’t answer the phone or respond to my answerphone message. We found the right building eventually and I hadn’t been added to the computer system so I had to wait for another half hour before they could take my blood. That part took just 10 mins! Hopefully it will be easier when I do it again in 12 weeks.

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