OVERVIEW
Sleep problems are very common for people with lymphoma and chronic lymphocytic leukaemia (CLL). Difficulty sleeping can commence immediately after diagnosis and may continue for many years following completion of treatment. Unhelpful sleeping patterns and insomnia can have significant negative effects on day to day functioning, and over time can drastically impact your quality of life.
Sleeping problems can include difficulty falling asleep, staying asleep, waking early and acute and chronic insomnia (three or more months of disrupted sleep). Breaking the cycle can be very difficult, although it is possible and made easier by following some of the tips and strategies outlined in the following fact sheet.
WHY CAN’T I SLEEP?
For someone with lymphoma or CLL, there are usually multiple causes of disrupted sleep, and these can be different for each person. If you are receiving chemotherapy, you will likely be taking high doses of steroids with your other medications. We know that steroids can have significant impact on your ability to sleep. Generally speaking, the benefits of the steroids generally outweigh the negative side effects. It is helpful to know that many people feel that the effects of steroids wear off after 24 hours or so, enabling better sleep in the days after treatment.
Other causes of disrupted sleep can include:
- Anxiety, stress and worry
- Fears about the future
- Hot sweats & flushes at night
- Pain
- Day time napping due to high levels of daytime fatigue
- Change in routine
- Obstructive sleep apnoea
HOW DO I BREAK THE CYCLE OF DISRUPTED SLEEP?
In order to start addressing your sleep concerns, it can be helpful to begin a ‘sleep journal’ which you can use to document your sleep and wake times each night. This can help identify patterns and will also be useful if you choose to see a psychologist or other health practitioner for sleep-related concerns. The following strategies may be helpful in managing your sleep-cycle. It is recommended that you allow four to six weeks of implementing changes before assessing any improvements to your sleep:
BUT WHAT IF I’M TOO WORRIED TO SLEEP?
Some additional strategies may be helpful when you are struggling with high levels are stress and anxiety:
- Talking about your concerns, fears and worries with a family member or close friend
- Talking to a counsellor, psychologist or spiritual care worker to address your emotional concerns
- ‘Worry time’. Setting aside time during the day (a half hour to an hour) which is allocated purely for worrying. You can worry as much as you like during this time, the idea being that when you go to bed you have already done your worrying for the day.
- Medicinal options. Talk with your GP about medications which may help you manage your stress levels and sleeping concerns
- Keep a journal of your experience each day including your thoughts, feelings and emotions. Some people find it helpful to write in their journal prior to going to bed, as a way of unloading their thoughts.
It is important to note that what works for some people may not work for others. The strategies listed in this fact sheet may not be effective for you, but it is helpful to know that there are many other resources and support options available. Don’t hesitate to call the lymphoma nurse support line on 1800 953 081, or email nurse@lymphoma.org.au if you would like more options or advice.
