myelofibrosis

Guest Post: Myelofibrosis and Willing to Live

“Diseases are only rare until you know someone with that disease” – Amy Dockser Marcus Myelofibrosis_MF_awareness_badge

I first read this some eight years ago in an article in The Wall Street Journal, but I only understood what it meant when I suddenly found my life turned upside down.

Six months ago, I was diagnosed with myelofibrosis – a rare type of blood cancer where the bone marrow cells, which are responsible for producing the different cells of the blood, die off and are replaced by fibrous tissue.

These fibers disrupt the body’s normal production of red blood cells (which carry oxygen to all organs of the body); white blood cells (which protect the body against invading diseases); and platelets (which help the body form clots when we are injured to stop bleeding and allow our bodies to heal).

Before this, I never knew what myelofibrosis was. My quick reading on my phone as I drove back after getting my results from the clinic showed that it is a fatal, rare disease that usually hits people over 60, with an expected lifespan of two to seven years after discovery. It very rarely affects young people. Every new piece of information I read came as a shock to me – I was in my early 30s, I was part of a small and very loving family, and I realized I had an untreatable type of cancer.

I spent several weeks in a very, very dark place. I was confused, desperate and had nowhere to turn. The only thing that kept me going was support from my partner who stayed strong to help me through this confusion – even though it was confusing for them as well. (more…)

Advertisements

The Myths and Truths of “Listen to Your Body”

Foam rolling to nurse an aching leg before a run

Listen to your body.

How many times have people said that to me over the past ten years since I decided to become physically active?

But what does it mean? The implication is: If your body tells you it is tired, if your body tells you it needs a rest, then give it a rest.

But it’s not that simple, is it?

The easiest thing in the world is to use “listen to your body” as the best excuse in the world not to go to the gym, or not to go out and run, or not to get on that bike and cycle. That’s what physical activity does: it makes you feel tired. You’ll have aches and pains. You’ll get ravishingly hungry. You’ll feel hot or cold or itchy or sleepy or mentally pushed to your limit. If every single time we listened to our body when it told us we didn’t want to do something, we would hardly do anything.

I cycled across Europe last year. I know I go on and on about it. But it was one of the best experiences of my life. And I learned so much from it. On that trip I felt tired every single day for a two-month period. E V E R Y  S I N G L E  D A Y. There were times on that trip when I had cycled for more than 100 kilometers, I was lost, I was hungry, I was thirsty, I was hot… but I kept pushing myself to get to my next destination. I complained in my blog posts during that trip incessantly. I complained about how tired I was. I complained about my aches and pains. I complained about all my anxieties. It’s what I do. I express myself to get the feelings out of my head and be done with them. I got many messages from people telling me it was all right to take a break. It was all right to slow down. It was all right to give myself a rest. Yes. It would have been all right. But I didn’t need to. I could and I did keep going because I knew I had it in me despite the aches, pains, and anxieties. I knew I had the physical and mental strength to do exactly what I set out to do. And on the few rare days when I felt I really needed a break, I gave myself one as a treat.

I’ve been training for a marathon now for months. I’ve found this experience even more grueling than a two-month cycle across Europe. (more…)