Katy B, aged 43
When I was first diagnosed, I had been feeling run down for a long time. I felt constantly tired, and initially I was told I had viral arthritis and depression, but eventually was diagnosed with an iron deficiency, but with too many red blood cells.
When I was diagnosed with an MPN, I felt elated – it wasn’t me imagining things, there actually was something wrong, and the diagnosis explained all my symptoms: the fatigue, the aching joints, even my big toe pain!
My MPN was managed initially with venesections, but that exacerbated my iron deficiency, so I had two years of interferon injections, and then back to venesections.
2017 was a bad year as I struggled to adjust to my diagnosis and the subsequent challenges, both physically and mentally. I would do something nice, but then have to rest for days afterwards because I had wiped myself out. It was frustrating; I had three small children and I felt unable to take them to places on my own. I stopped work, and it felt like my quality of life had just vanished.
In 2018, I decided I needed to take charge. I didn’t want to be defined by my MPN, so I made changes. I started running regularly, and doing strength work once a week. I entered the London Landmarks Half Marathon 2019, and raised several thousand pounds for Blood Cancer UK. Since then I’ve gone on to run a marathon, and join a local triathlon club. My determination to keep my body as healthy as I can has led to a whole new social life based around running! I volunteer and run at parkrun most weeks, and have entered lots of local races. Online I have started an account tracking my challenges around finding the balance between keeping fit and overdoing it. I’ve had lots of positive messages from people, saying that it’s inspired them to get fitter too. That’s what I wanted!
My employer at the time of my diagnosis really struggled to understand it all, and so I have been clear when going for a new job what it can all entail. I’ve learned to stand up for myself as well, because people (including some in the medical world) don’t always know about MPNs or understand them. That’s been hard, but I’m lucky I have an incredible consultant who has helped me.
If I do have down days, I feel impatient and angry, so I’m working on being kinder to myself when I don’t feel well.