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Patient Perspective: A Day in My Life

written by

Leukaemia Care, Charity

  • Vickie

Every day is different for me. I can have great days and bad days.

Since having chronic myeloid leukaemia (CML), things are different for me and my family. I get up and carry on with my daily routine. I take my kids to school, then come home and do the housework. By the time I finish, I have to collect my kids from school. Depending on weather and how I am feeling, we either go to the park or have a walk. We do homework and reading, then have dinner and get settled for bed. I often do as much as I can with my kids. We go to parks galore in the better weather. We go for walks in the not so better weather and, when it’s really bad, we stay in. We watch movies and draw.

However, even though this is my daily routine, every day is different in how it is done. I suffer with awful cramps and muscle joint pain, so that gets in the way of a lot of things, including walking, shopping, even reading with my kids. When we draw or write together, my hands start cramping up. This hurts and I have to stop and wait for the pain to go away, which is disappointing for me and my kids. It can last for five minutes or even a day or two. I also get headaches and feel sick some days.

I like dancing. Often, when doing my housework, I would dance (as you do), but due to my cramps and pain I’m forced to stop. Even doing household chores can hurt me. Also, a lot of the time, I become very exhausted and tired. When I visit my friends and family or they visit me, after a while I can feel myself becoming very exhausted. So much so, I stop chatting away and become quiet and want to go to bed for a lie down. As my children are young – a 10-year-old son and a 6-year-old daughter - they have so much energy. The running around I have to do is exhausting. I get cramp in the soles of my feet as well, which means it’s difficult for me to walk and, as an avid walker, this is very distressing to me.

I always try and do what I can every day, even if it is just a little as this is better than nothing. I used to draw a lot, but due to the cramps in my hands I cannot draw as much as I’d like. However, I still try and do a little when I can.

As for my medication, I take it at night. I used to take it in the morning, but this would knock me about a lot and make me feel and be sick. Also, I suffered with headaches and didn’t feel my best, so I decided to change the time. I take them before I go to bed, as when I am sleeping I don’t feel any of the side effects. A few times, I’ve woken up being sick, but this is very rare.

My life has completely changed but I am determined not to let it get in the way of my daily routine. 

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