'How I have stopped chronic pain from defining my life'

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A reader, who wishes to remain anonymous, describes her decades-long journey of dealing with chronic pain.

I would like to respond to the article about chronic pain in the hope that it may help others. I have an inherited migraine condition, which is related most often to changes in barometric pressure, but there are other triggers. I have been in pain for up to 50 hours a week, for about 20 years. Here’s the interesting bit – I am happy.

I related to the advice that you are not your pain. I dislike it when the first thing people say to me is, “How are your headaches going?” I want to reply that they are much the same but that my daughter just won a scholarship for excellence, my son is happy and learning in his job, my marriage remains a joy after 30 years, I own my own home, have enough to eat, live in a peaceful country and have supportive family. I am not my pain.

The validation issue is also very real. There is a tendency among medical professionals to almost blame the patient when they don’t follow the usual trajectory of healing. The most damaging experience I ever had with migraines was when my GP at the time suggested it was depression.

That ignorant perspective filled me with dread, because I knew what my pain was about. I knew it didn’t follow difficult times in my life, anxious times in my life. It tracked the weather. To have my condition analysed by someone less able to assess scientific evidence than me was devastating. That way forward would be hugely time consuming and I knew it would achieve nothing. I changed GPs immediately.

There is another sensitive issue happening at the moment for people in chronic pain. They have good cause to be troubled by the government’s new laws around the use of Panadeine Forte and the like. I have been this using drug for 20 years. By definition then, I cannot be addicted. Addiction is defined as having two components: (i) increasing amounts of the drug are needed for it to work and (ii) withdrawal occurs when the drug is stopped. The drug still works as well for me as it always did. Most often two Panadeine Forte, with an ice pack, will solve the problem. But sometimes I need five. I have not increased from two to three to five to eight to ‘nothing works’. I flip-flop according to the severity of the changes in the weather. I also have periods of several days or even weeks in a row when I don’t need it and don’t take it. I feel only appreciation during those times. I do not feel any withdrawal. I hate the drug. It causes nausea and constipation among other side-effects. But I would be in agony for hours if I did not take it when I need it, which is often.

I have tried every migraine prevention drug on the market, and have even trialled the most recent preventative drugs administered by self-injection. None has made a significant difference. The best thing I have used so far is ice packs.

Read more: Loneliness of the long-distance swimmer

There are also two very contradictory sentiments that are pedalled for people with pain. The first is that pain is proportional to the attention you pay it, and the second is that you need to deal with it quickly to stop it escalating. The problem with these generalisations, as well as the fact that they are confusing, is that no two people are the same in their experience of pain. It does not make a jot of difference how quickly I respond to pain with medication. It has its own agenda, completely dictated by external stimuli and follows its course. For me, the first one is very true. Distraction is key to so many things and has been since we were babes. How do we console a troubled child? Distraction is powerful but it only works to a degree.

My plea is that medical professionals listen to the stories of sufferers and analyse the information they provide. Many of these people are highly skilled at analysing their condition and are best suited to advice from the medical world on the problems therein. Forget tests. Listen instead.

Friday Reflection is your chance to write on any topic that stirs you. Simply send your contribution to [email protected] and put Friday Reflection in the subject field. Published authors will receive a $20 Prezzee digital gift card that can be spent at more than 120 retail outlets.

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