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Tiredness will come and go – make the most of the “go” days.

Liz was diagnosed with Anca Positive Vasculitis and Chronic Kidney Disease [CKD] in 2016 following an infection, this is Liz’s story that she shared with us.

I am Liz, 53 years old. I work as a teacher in a Welsh medium primary school in South Wales. I am also a Welsh speaker, cat lover and a Winnie the Pooh enthusiast. I have a fantastic family which includes my husband Steve and my 13 year old daughter, Mali. I have been Type 1 diabetic since I was 11. I had a bilateral hip replacement 2 months after starting medication for vasculitis and CKD.

I was diagnosed with Anca Positive Vasculitis and CKD in 2016 following an infection. With this I had a biopsy in my back and my bloods were taken, the bloods showed an abnormality and then I was admitted urgently to hospital for further tests. The tests showed that the vasculitis had affected my kidneys. Over a six month period I received eight cyclophosphamide infusions and steroids. Now I take Ramipril for high blood pressure and MMF twice a day.

I think taking a moment to reflect can really help when moving forward. I can look back on times that make me laugh or giggle to myself. I remember after my treatment had started, I returned home, and my legs were swollen, they looked like MASSIVE hot dog sausages. My feet couldn’t fit into any shoes!

For me, the most challenging thing about living with CKD was how overwhelming the diagnosis was and how unsure about the future I was. The effects on my family plans were immediate and painful. The diet can be awkward on times, you always need to take care of what you eat. The foods I used to enjoy are not advisable e.g., crisps and citrus fruits. With the diet there is so much information out there and it can be very confusing on times. It takes a moment to get to know what works for you the best.

I have little tips and tricks that work for me. My top tip for others who struggle with CKD is to maintain a positive attitude and to build up your strength! Having CKD does not mean you can’t work or play but you need to pace yourself. I recommend setting small goals to become more active. Tiredness will come and go – make the most of the “go” days.

Living well with CKD hasn’t always been easy, especially since lockdown. I have, however, rediscovered my garden and the joy of growing my own vegetables. I have taken the opportunity to slow down and tackle some jig-saw puzzles too. I have even been able to increase the amount of walking I do, I started walking (pacing) the streets early in the morning or in the evening. Now I can go further, taking in the miles if I am feeling strong.

Pre-lockdown I enjoyed family time, shopping, traveling, the gym, animals, reading, and socialising. Once we are through lockdown I am looking forward to seeing my extended family, traveling, and going back to work properly in a school. I am also looking forward to being a more spontaneous me.