My strategies for dealing with fatigue
Gerard, 72, was diagnosed with chronic lymphocytic leukaemia (CLL) in 2017.
Please note, this story was written before the coronavirus (COVID-19) outbreak. If you’re shielding, some of the activities described here may not be appropriate for you. Speak to your healthcare team for tailored advice – they know you and your individual circumstances.
It’s hard to describe fatigue to somebody who hasn’t got it. There’s a perfect word: ‘quanked’, which means overpowered by tiredness. I saw it on an online group for people with CLL.
Fatigue can hit me at any time – even if I’ve not done anything. Sometimes I feel up for something, and then all of a sudden I think: “I don’t really want to do that.”
Staying active but listening to my body
I still play a lot of golf. I used to play competitively – up to six times a week. Since my diagnosis I’m down to three times, but I’m getting back into it. I bought myself a buggy, so now I can compete over 18 holes again. If I’m walking I can’t do that, because the fatigue hits me.
Planning my activities
I haven’t given up the things I enjoy. I just make sure I plan properly, and I’m a bit more selective about what I do.
We travel all over to play golf, so if it’s more than a two-hour drive, I try to stay over. I look for good deals on B&Bs and hotels, but I don’t see the point of penny pinching if it’s something that will help. Sometimes my wife comes with me, so we make a proper break of it.
If it’s a really long drive back from a tournament, and I’m feeling really tired, I stop and have a nap on the way back.
Keeping my brain sharp
I also play bridge once a week, and during the winter about three times a week. It’s a great pastime and very addictive. I think it tests your mind, because fatigue also affects that to a certain extent. They say very few people who play bridge get dementia.
I’m a member of the Bolton Bridge Club. There tended to be too many people there coughing and sniffling, and I have to be careful because of my low immune system. But now they’ve put a sign up saying if you’ve got coughs and colds stay at home, and now it’s much better!
I think there’s not enough information for people about feeling lethargic and tired. I go to CLL meetings now and meet like-minded people with the condition. Some of them have had it for 15 years or more. I came away from the last meeting in Newcastle knowing a lot more about managing it.
My wife Eileen and the staff at the Churchill unit of the Royal Bolton Hospital have also played a very important role in supporting me. I would hate to be on this journey on my own.
People hear leukaemia and think that people are just going to rot away. But it’s important to know, it’s not all doom and gloom – there is life with CLL.
Janssen-Cilag Ltd has supported Blood Cancer UK with funding for the production of this web page and others within the ‘Living well’ section. It had no influence over the content.