When people don’t understand the impact of pain-it hurts.
The Mood Moose
Who knew how good a pain killer Naproxen is? Take note but protect your stomach! I’ve been on it since the start of the spinal growth caused me pain. It helped. So much so it was a while, until I started to lose power and mobility I realised I might need more help. Since then my cocktail of drugs has changed and varied but naproxen maintained. When I was told to stop it as I started chemotherapy ( I didn’t know till the day before) I thought ok some tweaks of other things and I might me ok?
I talked to a GP, we made a plan. The steroid holiday got me through the first day and a bit, by Sunday I was whimpering in pain by the evening, during the night and first thing in the morning. Monday morning came I contacted the GP. We topped up pregabalin and I asked re topical gels. Ask oncology- they told me to ask GP-. I asked the pharmacist-they told me to ask oncology. Wednesday I asked oncology, explaining my pain levels even when further increasing pregabalin and oromorph for breakthrough they double checked and yes topical NSAIDs are fine.
At 9 next morning-Thursday by then-saw a nurse practitioner explained the above, got bloods taken for next days chemo and I said I’m considering I will need to stop chemo as I’m losing my little mobility I have left and fear it won’t return which would have a huge affect my health. I left with a promise to speak to the duty doctor and call me back. He did as promised and arrange a topical gel prescription through GP with the words we want you to be able to continue chemotherapy.
Another day passed until the prescription was sent to the pharmacy. It was for 5% ibuprofen gel. I could have bought 10% over the counter for around £5 two days earlier but I thought GP could prescribe higher levels. I was incandescent! The nurse that morning who delivered my chemotherapy in the obligatory black bag (eek), said you must get on top of this pain level. She saw and heard me. The GP didn’t see me, didn’t understand and I have to assume doesn’t know about pain control. Believe me I couldn’t have done more to self manage last week. I had tens machines and heat pads daily, a relaxation session at Maggies and a Mindfulness class on line too. Frequent naps and lying down with a book during the day added in. Whilst also managing the nausea and many symptoms ( I will spare you those) of chemotherapy.
I’m not looking for sympathy, I just want people to understand that when someone who lives with chronic pain is asking for help please don’t patronise them whether that is with platitudes or homeopathic levels of pain relief.
The irony of this experience is I’m currently working with Versus Arthritis on the Pain, People and Place programme in Scotland. In one of my reports I quote from someone who was feeling rather desperate for someone to listen and respond to his needs. So he spoke for me too when he told me that, when someone believes me it makes all the difference. Is that really too much to ask for?
Right I’m off to lie down now as I’ve finished my midget gems, an important part of my self care you understand. My family have done so many thoughtful things this last few weeks and months. One being a mood moose with home made banners attached. One says hug me, another wine o’clock ( more like boak o’clock currently) and the third is fuck off. Guess where I am currently?