Karen's story: Living with multiple medicines
Find out about Karen and hear her speak about the value and challenges of taking multiple medicines.
Female
Age at interview: 37
Number of medicines: 8
Cultural background: Anglo-Australian
Background
Karen works as a psychologist in disability support, providing counselling, assessment and behaviour management. She lives on her own in the Blue Mountains of New South Wales and often has her niece and nephew to stay.
Current medicines and conditions
Some medicines are taken regularly; some are taken only as needed.
- Tramal (tramadol): back pain
- Panadol Osteo (paracetamol): back pain
- Levlen ED oral contraceptive: contraception
- Elivit: multivitamin supplement containing iron and folic acid
- Endone (oxycodone): back pain
- Metamucil: constipation
- Garlic and horseradish: sinus and hay fever
- Joint Formula: glucosamine and chondroitin supplement.
Previous conditions and medicines discussed
Magnesium supplement: not currently taking this; recommended by acupuncturist.
About Karen
Karen first experienced back pain four years ago. Despite spinal surgery, she requires regular painkillers and other therapies. She was initially reluctant to use stronger painkillers, partly because of the stigma associated with them. She now tries to focus on the effect the medicines have on her pain and if they enable her to do the things she wants to do.
Although Karen would like her old life back, she accepts that she will need to take medicines and use other therapies for the rest of her life so she can do the things that are important to her.
More about Karen
Karen was very healthy and active until four years ago when her back suddenly started hurting, due to structural problems in her spine. Since then she has continued having major problems with her back. Spinal fusion surgery two years ago improved things a little, but she still experiences significant back pain and is much less active than she used to be. She has had to reduce her hours at work and cannot maintain the same level of physical activity that she used to do.
For the first 12 months her pain was less severe and well managed with milder painkillers. About a year later, the pain got worse and up until she had surgery she needed regular doses of strong painkillers. Her pain is now reasonably well managed with regular Panadol and Tramal, plus Endone when needed for breakthrough pain or flare-ups. As the Endone makes her feel a little dopey she tries not to take it if she has to drive or if she is at work, so even though she is in pain, she often delays taking the Endone until she is at home. The main side effect she has experienced from her painkillers is constipation, which she mostly manages with a high-fibre diet.
At first Karen was reluctant to use stronger painkillers, partly because of the stigma associated with strong pain medicines, but eventually began taking them as the pain was affecting her so much. In the past few years she has gradually accepted that she will never go back to how she was before her back problems started and that she will need to take painkillers for the rest of her life.
Before finding her current GP almost three years ago, Karen experienced problems getting painkiller prescriptions from a number of GPs. Karen trusts her regular GP who is easy to talk to and discuss things with, and is interested in pain management.
Her dosage regimen changes often, depending on her level of pain, and Karen finds her medication levels are a good way of tracking how things are going. She has a medicines list that she carries with her, packs her tablets into a medicine dosing box each week, and uses the Medilog app on her phone to record her medicines and remind her when to take them. The app also allows her to record extra doses of medicines, which she finds useful to check how her pain has been over long periods.
Although she would prefer to take fewer tablets, Karen tries not to focus on what she is taking, but what effect the medicines have on her pain and if they enable her to do the things that are important to her. While it took a long time for Karen to accept that her back pain is a chronic condition and she will need medicine for the rest of her life, she realises that her medicines and other therapies allow her to get the most out of her life.
Listen to Karen's story
Karen has ‘tested’ her complementary medicines to see if she really needs them by stopping them temporarily. She has reintroduced some and ceased taking others depending on what she experienced.
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Karen experienced such a severe side effect from one of the first pain relievers she tried that she reached a compromise between managing the pain enough to be able to do things and minimising the side effects.
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Karen decided to do all she could to reduce pain and heal in the first year following her injury, despite needing to incur debt to do so. She needed to revise this when she found herself in significant debt due to her medical expenses.
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Karen manages the constipation caused by her medicines with a high-fibre diet and supplements when she is eating away from home, particularly during times such as Christmas that go for several days.
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Karen could respond to her niece and nephew’s questions in a way that was satisfactory to them, but she was taken aback by the same kind of questioning by a work colleague.
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Karen’s condition means she has reassessed what is important to her and what she wants from life. Medication is helping her to achieve those things.
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Karen is very close to her niece and nephew. She puts her medicines out of their reach when they come to visit, which is a frequent event.
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Karen lost self-confidence and would ask colleagues to check that what she had written for her thesis had not been affected by the medicines she was taking.
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Karen keeps a paper-based medicines list in case she needs an ambulance. She also uses a free app that includes reminders and can keep a record of how she feels and what pain medication she has taken.
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Other people’s reactions to the number of medicines Karen takes and the assumptions they make about her because of them, are among the most difficult aspects of managing a chronic condition.
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Karen feels she has been able to ask her neurosurgeon all of her questions because he encouraged her to ask them at her last appointment, despite how busy and behind schedule he was.
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Karen’s medicines limit unplanned overnight stays. She does, however, sometimes use this to her advantage.
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Karen has had many challenges finding medication that manages her pain adequately enough to enable her to sleep. She reduced her work hours to allow for this.
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Karen was staying with her parents when she first injured her back. She found it a real challenge convincing a GP closer to home that she needed prescription painkillers.
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Karen needed to try many medicines and combinations of medicines for pain relief. Nothing worked well for very long. She has since found a compromise between pain control and being able to function.
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Karen has found a standard response to any question about her medicines that works most of the time. When it does not work, she feigns vagueness.
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Other people's stories
The Living with multiple medicines project was developed in collaboration with