Pictured above: Liz Gill, Vice Chairman of the British Porphyria Association BPA, with her sister, Sue.
A discussion with my sister, Sue, a fellow porphyria patient, revealed five techniques that helped her to regain a sense of normality, after life in her twenties was torn apart by acute porphyria attacks and crippling chronic pain.
Being stoic about pain doesn’t work. If you’re in pain, it’s OK to use pain relief. If it doesn’t work, seek advice and try something different. A pain-management specialist developed a new medication plan for Sue; various medications, at lower doses, were combined to work simultaneously on the different systems of the body, which elicited a better response to her pain.
Be kind to yourself
When you’ve had a bad day, try not to admonish yourself for not being able to do what you planned. Try not to feel guilty, angry or critical of yourself. It’s not your fault AND it won’t change anything! Sue attended a cognitive behavioural course on pain, which helped her realise that she didn’t need to feel so guilty all the time.
Good quality sleep makes a huge difference to how we feel mentally and physically, so it is important to get enough. Pain can seem infinitely worse when we are tired. Aside from the well-known instructions for maintaining regular sleeping patterns – such as avoiding screens before bed and cutting back on caffeine – Sue notes that actually the most important advice she received was simply to sleep when you can and when pain relief is at its optimum level. Adjust pain medication times so that you can get to sleep when they are at their peak.
Relaxation and breathing
Sue notes that some of her worst pain episodes have been made more bearable by using breathing and relaxation techniques. Mindfulness, meditation and breathing techniques can help relax the body, which can ease pain and tension, as well as reduce stress and anxiety.
Look after your body, but pace yourself
There’s a known connection between physical health and pain. Even if you cannot do much, try to do some level of activity every day. For some people that might be a run or a cycle; for others, it may simply involve climbing the stairs a few more times in the day. But pace yourself; there’s no point doing a two-mile walk one day, then being unable to move from your bed the next day.