Having always been very active before her transplant, Sarah now uses meditation, Tai Chi and yoga to deal with fatigue and stay strong, calm and healthy. She's written this guest post for us to explain.
I was always very fit before my transplant, so it was a shock when I got home and couldn’t make it up the stairs.
I was diagnosed with leukaemia in June 2010. I’d been unwell for a while and had spent a month in bed. There were lots of possible diagnoses but the doctors didn’t know what it was. Eventually they took a blood test and that afternoon I was diagnosed. After two rounds of chemotherapy, the only option was a transplant.
I was in and out of hospital for the first year. I had a series of infections and had to keep going back for donor lymphocyte infusions and a stem cell top up to get my blood cell counts up to 100% donor cells. I had to go in for blood tests twice every week. My mouth was sore due to Graft versus Host Disease and I couldn’t eat properly, and all the tests made me worry. It all took its toll and I became very fatigued.
It was a struggle just to get up. The nurses had warned me, but I wasn’t prepared to find it hard just to stand up while I waited for the kettle to boil.
Sarah on Dartmoor
I pushed and pushed myself, and I set myself goals
I could see my muscles wasting even before my transplant. So when I went in to isolation I took in small hand-weights and the team brought an exercise bike into my room for me. I made myself use them every day, just gently, and I walked around my room. It helped me maintain a level of strength and fitness, and keep my fatigue from getting worse. Just knowing I was doing something made me feel more positive.
During that year of blood tests and hospital visits I stopped using the taxi and walked the few hundred metres to the hospital. And I climbed six flights of stairs to the clinic. I had to allow a lot of time to get there! Those journeys meant I could measure my progress and see that I was improving. I made myself go walking every day. I had my husband there to support me so I could lean on him if I needed to.
Meditation, yoga and Tai Chi helped me to recover, both physically and mentally
Those days going to the clinic were exhausting. I was shattered, but I didn’t want to go to bed in the afternoon so I started doing guided meditation. Listening to the tapes, I wouldn’t go to sleep. It did a lot of good - it was half an hour of being calm.
A friend suggested I try a yoga DVD. It’s not strenuous and the movements are slow. It meant I could build up my muscles really gently. Then my doctor recommended Tai Chi; it was available at the local gym on prescription. It included elements of Chinese medicine which I think helped physically, mentally and with my wellbeing as a whole. The key is setting yourself goals, and knowing that these gentle forms of exercise are just as good for muscles and joints, and peace of mind.
It's all about balance
My recovery was a very slow process. I had to push and push myself. I’m not as fit now as I was, but I am nearly 50 so maybe I wouldn’t be, anyway! I did a 5k run for Cancer Research UK with my brother, my donor, in September 2014. We’re going to try and do 10k this year. When I go running, it makes me feel positive and reassures me that I’m fine. And even when I feel low, I can still go out for a walk. It’s the thing that saved me.
I still get fatigue but I’ve come to accept it and pace myself. I don’t feel like I have to finish everything on the to-do list, and I’ve learned to give myself permission to have a rest. It’s about balance.
Have you struggled with fatigue and tiredness following your transplant? We're about to release our new booklet - 'Managing Fatigue after a bone marrow or stem cell transplant', with helpful tips and advice. To pre-order your copy email us at patientinfo@anthonynolan.org