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? 

I love spring….

 I love spring. 

The hopefulness, the renewal of life, the colours, the surge of energy that even we humans can feel, leads to a sense of optimism. To be honest I’m in need of optimism when it seems my spring and summer is likely to be consumed by further treatment for breast cancer, while adjusting to new drugs for rheumatoid arthritis. A powerful cocktail but not the kind you would order for fun. There’s no jaunty umbrella, frozen fruit or champagne in this one. I’m trying to arrange things to look forward to but it’s hard to know what might be possible and when. 

So to cheer myself up I ordered a copy of the book Preventable by Devi Shridhar. I know how to have a good time! It is fascinating and well written  and captures the reader and in my defence I’ve long had an interest in public health. What is so interesting is how much a recent event like this has changed our lives and relationships too. It seems like another time we sat in lockdown, uncertain and fearful and yet even with falling numbers, the virus remains very present. Yes it’s more treatable but the daily death toll still speaks to its dangers. And yet we feel alien now when wearing masks in public. Lone rangers in masks against a tide of denial. How easily we can be blinded to the risks. But I do get that life has to be more than hiding from a virus. I really do understand that. 

Against that backdrop I’ve agreed to more treatment to try to prevent the cancer from returning. The oncologist is very sensitive to my situation and how much my health is diminished and so the treatment is geared to this and I know we all wonder how much I can manage to be honest. But I think I need to try at least as the BRCA2 mutation is proving to be a powerful foe. At times I think I’m deranged to even think about it. At times I think I’m deranged not to consider it. It’s exhausting. 

What has sustained me is time with my family; Easter fun, a wee holiday in Crieff and time with both my children and their families for respite and to keep safe while a very welcome wet room is fitted. Friends too have listened and cared while also discussing the huge issues, especially Ukraine, we see and read about daily in the news. I’ve finally accepted we can’t provide a home to a family at this time but I will do what I can in other ways. The small town of Aberfeldy ( now home to some of the family of course) is showing the UK how to do it. With big hearts they have opened their doors. My Grandson ( aged 3) knows the Ukrainian flag that flies from many local buildings and his Mum and Dad have given his kilt ( as well as other maybe more practical items) to a family newly arrived with a toddler. The sight of him speaking Ukrainian and strutting his stuff in a kilt is food for the soul. And don’t we all need that just now. There lots of soul food out there, I know. My plan is to have as much as I can when I can and for now that’s enough. 

And finally for something that’s worth a whole blog on its own, this month is Ehlers Danlos Syndrome Awareness month. People with EDS have a defect in their connective tissues. It grieves me beyond words that our Granddaughter was diagnosed with this is recent years. It’s such a devastating syndrome and frequently under diagnosed. It’s important therefore that there is more awareness so people can get the support they really need. So I share this for our Phia with so much love , I so wish I could take it away from her.