I was anything but a fitness junkie, but I was very active before my MDS diagnosis. My wife and I went ballroom and sequence dancing twice a week, I went to the gym twice a week to do some weight training, we would regularly walk four or five miles, I would try to do at least one yoga class a week. In fact, other than starting to find walking uphill challenging I had no symptoms.
The consultant said it can be quite late for someone who is fit for symptoms to become apparent. Looking back, I can see some hints, but nothing that triggered any alarm. In June we went on a walk in Madeira up a steep incline and I got seriously out of breath, but I made it, and later I started with a bad cold that we attributed the breathlessness to – that and being 1000 metres above sea level.
As there is an increased infection risk, particularly in the flu season, we stopped dancing and I stopped going to the gym. After my nosebleed and hospital stay, I was put on watch and wait while we went through diagnostics. My haemoglobin had dropped to 66 and was recovered to over 80, and with regular transfusions has been kept in the mid 80’s.
Walking is now my main cardio exercise, and if my haemogolbing is above 80 I can manage about 3 miles on a level path at a moderate pace. If it drops into the 70’s I can still do a reasonable walk, but it is a struggle. I take my time and if I start to feel the strain will rest. I discuss this weekly with a haematology nurse. It takes a bit of determination but I usually manage three or four such walks a week.
Having done a year of resistence training, I wanted to keep some of that going. So I bought some weights for home. I am lifting about two thirds what I was before my diagnosis and I have cut down my sequence by over half, and trying to do this twice a week, but not on days I walk. I feel better for this, though again it takes a bit of determination.
I took up yoga over 10 years ago, and it has been really good at keeping me flexible. However, I was wary about some of the postures because of my propensity to trigger nose bleeds. I started to stiffen up, and some sciatic discomfort was creeping in. I did a Yin Yoga course a while ago, and so I have started to do some yin yoga regularly and I am finding it is really helpful.
I don’t do anything on a day with a transfusion / infusion, which is now every Wednesday. On other days, I judge what I can do best – considering the weather and how I am feeling. If my haemoglobin drops below 80 it can be.a real effort to do any exercise, but I usually manage something, even if it is a much shorter walk.
I’ve now got a real awareness of what is safe for me to do, and I resist pushing the boundaries too far. If I am tired, not exercising is tempting, but then it can effect my sleep, and when I get going the exercise is enjoyable and helpful.
Fortunately, other than MDS, I have no other health conditions. A stem-cell transplant is on the near horizon, so being as fit as possible for that is important.