Thursday, 4 April 2019

Dealing with Pain


Back in those terrifyingly warm days in February, I asked for your advice regarding pain remedies and what you found to work in your own pain management.

I was cheating preparing for a talk on pain management from the ‘customer’ angle and suspected that there was a lot I didn’t know. The talk was to take place in March as part of the 2019 Yorkshire Cancer Research conference: Let’s Talk About Cancer.

I say, ‘was’. Alas, due – thankfully – to nothing to do with cancer, but the return of Ménières disease which I thought I’d booted into touch in those heady days of my thirties, I had to cancel my talk. The disease isn’t very pleasant but isn’t life threatening and I find the unpredictably of the attacks of vertigo and sickness it brings, as painful as the attacks themselves because I am forced to become unreliable. I can’t commit to public events knowing that I might be crawling along the floor, or sitting bolt upright staring at the wall with a bowl under my chin, when an audience is waiting for me to speak - or worse, as I'm speaking. Can you imagine!
The good news is that the very lovely, understanding people at Yorkshire Cancer Research (YCR) quickly managed to fill my slot and I have heard from many sources that the conference was a massive success.

Meanwhile, I thought the least I could do would be to cobble together the responses you kind people had bothered to send via the blog, FaceBook and Twitter and post them here. Some I’d forgotten about, and others were new to me, so I hope that this might serve as useful resource if you sadly find yourself in need of something bigger and more enduring than a paracetamol – not that I’m dissing the lonely paracetamol, you understand, paracetamol has saved the day for me on many occasions. I have to say this because I have this slightly disturbing imagination which throws my mind headlong into the family medical box and sees a box of paracetamol sombre, rejected and wondering why on earth it bothers.

I know, it’s a worry.

Before we really start, I’d like to add a note of positivity for anybody with the misfortune to have been recently diagnosed with Menieres disease. It isn’t curable (although does tend to peter out, hopefully never to return) but is often treatable. I am now on a fairly innocuous medication that hasn’t stopped the attacks but has made them much less severe and less frequent. I’m hoping that with continued tweaking I will have enough control over the disease going forward to return to normal life including full attendance at public and social gatherings 😊

And this means that I secretly hope that I will manage to attend the next YCR conference and be able to babble on about pain management without incident, not least because I’d already prepared the talk before I’d cancelled – typical!

Obviously the below isn’t an exhaustive list (and please do let me know your additions) but it is the word - summarised or as a direct quote - from the ground, from the coal face, of making pain slightly easier to bear. Even though there is a bias towards cancer in the responses, much will be relevant whatever the cause of discomfort.

Acupuncture: for mental well-being, aches and pains and hot sweats, and other complementary and alternative therapies.

Distractions: anything with friends and family; colouring, crafting, reading and writing (for mild pain – I knew it was bad when I couldn’t blot out the pain well enough to read or write) and oh, so many other hobbies.

Endorphins: warm, soapy baths (lots of people mentioned hot baths!); Epsom salt baths (with the added bonus of nice, soft skin afterwards) singing and playing instruments; walking, running, swimming and other (gentle) exercising; just being outside - preferably in the sun; dancing on the spot to alleviate restless legs (but it also made me laugh); being active.

Heat pads and hot compresses to soothe sore and tired limbs and muscles, can also help with restless legs.

Infrared sauna: ‘it’s like a sauna that you sit in, but there is no heat. You are baked in infrared light. It heats the blood rather than the skin and improves circulation.'

Mindfulness, meditation and other cognitive therapies.

Reflexology: for general aches and pains and mental well-being.

Reiki: ‘as a Reiki therapist, I’ve helped treat many people undergoing cancer treatments. On a superficial level, it helps to calm their minds from what is such an emotional part of their lives, but does also provide (on many occasions) pain relief as well.’

Soft Toothbrush (!): this had to go in as my pitifully sore mouth is a strong memory of my chemo days. For the ulcers there are stronger topical medicines available on prescription so do visit your doctor, and if the idea of navigating the sores as you clean your teeth is terrifying, try a really soft toothbrush soaked first in hot water. 

Stretching: particularly after Aqua Fit, a hot bath and general exercise.

Steroid cream: for pain in the veins. Also, please note: ‘…I went back to good old fashioned nature - pure aromatherapy lavender oil and hot compresses- working a treat- I'd say take the drugs for sure but don't forget about the healing powers of nature and a good old fashioned positive mental attitude.’

One last thought on pain management.
As a daughter of a nurse, I knew that I’d have to collapse in a heap on the floor and be unable to answer what day of the week it was before I’d be granted a day off school sick. I think this is why I spent my early adulthood with the box of paracetamol – there I go again – being out of date before I opened it, and drinking my body weight in water before I’d even approach the medical box.

But since cancer and a few operations over the years, I've had to retrain my psyche on this. I've had it explained that pain stresses the body with the result that it doesn't function and thus recover as quickly as it might if it were in less pain. I’ve decided that alongside natural boosts of our endorphins, medicines can be our friend and some of the medications to combat the side effects of cancer treatments can be the best buddy ever. Whatever your strategy: medicine, holistic, alternative or a combination, be kind to yourself and use it! Life is too short to stoically suffer in silence...


I wish you a happy and pain-free or pain-eased week 😙

Wednesday, 20 March 2019

Deaf for a Day

You know those moments in life where you have a chance exchange with someone which is not particularly remarkable in isolation, but nonetheless makes you smile and brightens your day? I have a lot of these when I manage to walk away from my pc and jump back into the real world.

However, this telephone exchange with a booking agent the other day was not one of those moments. No, this one left a mark in my brain for all the wrong reasons. And had it not given me an idea of how to change the world – hey, reach for the stars and you might land on the moon - it would be unremarkable; something that happens all too frequently I’m afraid, and requires nothing more than a shrug of the shoulders and a brisk brush off so that it doesn’t lend a dark shadow to the day.   

I *may* have mentioned previously that I am the one in six in this country who struggles with poor hearing. I’ve written about it specifically here and here. Sometimes my mishears are amusing and sometimes they pass with nobody, least of all me, registering. I am fortunate to be surrounded by sensitive friends and family who do their best to make things easier for me and I am also incredibly lucky to be the owner of the very latest in hearing aid technology which is the difference between me working and, to be frank, leaving the house or not. But I would be lying if I said that hearing loss is easy, disingenuous if I pretended it didn’t pervade all aspects of spoken communication with the outside world. 

When people aren’t impatient with my ‘pardons?’ and when they don’t jump from a gentle comment to a megaphone shout which I can hear, boy can I hear, but still can’t make sense of the sounds (because a shout, I’ve learnt, distorts the sound even more) that makes me very happy.


In this phone call the person on the other end of the line broke all the rules of communication with the one in six who is hard of hearing. She was irritated. I may not be able to hear every word but even without the eye rolling and screwed up face, I can hear irritation. She had no time in her busy day to repeat everything three times. Couldn’t I just concentrate a little harder because then I’d be able to hear, surely? Simple.

If only.

I do try to be a grown-up about this. I realise I should go-out-and-get-myself-a-real-problem if I’m going to allow a phone call with a stranger to ruin my day. I try to pull up my big girl pants and sweat the big stuff instead, but when this kind of exchange happens once too often, in a moment when you’re struggling to remain upbeat about the weight you carry when you struggle to hear and thus communicate, sometimes those big girl pants feel very heavy indeed.

I ranted to my friends. That helped. Then I had an idea and it won’t leave me alone. I’d like to share it with you. And maybe you’re a teacher or a parent, you work in education or are simply interested in making people’s days a little brighter, and might join me in pushing this idea as far as I can.

I have some sympathy for people who don’t know how to sensitively communicate with people who can’t hear. Some sympathy. There is a part of me which thinks that if people have respect for others, and are happy to hop into their shoes when necessary, they would endeavour to hide their irritation for this disability. That seems the human thing to do. Indeed, I remember a relative constantly shouting at my terrifically sweet grandma who had developed age-related hearing loss and I ached for her.  Even as a child I understood that it wasn’t her fault and, particularly as a child, I could imagine how unpleasant it was to be shouted at, so I don’t think the concept is a particularly tricky one.

However, the nuances of improved communication with the hard of hearing do tend to come as a result of experience. My family know not to attempt to communicate with me from another room. They don’t cover their mouths with their hands as they speak. They try to rephrase a sentence rather than repeat it verbatim because they’ve learnt that a different word may be easier to hear, and they discretely help me when they can ‘just tell’ that I’ve lost the thread of a big conversation. They have learnt this from experience.

I know to speak more slowly as opposed to loudly to give people that split second longer to match the lip shapes to the sound they’ve heard. And I know that there are homophene groups, (sounds which do not sound the same but look the same on the lips) and so signing the first letter of the troublesome word might help a lipreader make sense of it. I know that context is everything so if somebody really isn’t managing the conversation, it’s probably best to stop, explain the context and start again. Life and attendance at lipreading classes has taught me this, so it isn’t fair to expect people with normal hearing who aren’t in regular contact with those with hearing loss, to know this.

But they could.

Were you lucky enough to attend one of those primary schools where pupils spent the day blindfolded to experience a quick snapshot of life for people who can’t see well? People talk about the experience way beyond their school days, referring to how effective it was in raising awareness of disability at a wonderfully impressionable age. I don’t know if this is still practised, but I do hope it is. It’s true isn’t it that some of our most vivid memories, our deepest beliefs and ethics come from innovative teaching, fun activities and unusual initiatives experienced when we were under ten years of age.

So, how about a ‘Deaf for a Day’ initiative in schools? No expensive technology would be necessary, I’m sure simple headphones could be used to block out or distort sound for a few hours. If we wanted to make it truly authentic, we could even pipe some tinnitus sounds, screeches and whooshes into ears at random moments, just to upset the train of thought, right when the pupils thought they were managing pretty well using mannerisms and context to stay in the moment. Cruel, I know 😜.


It could be fun! It is staggering how much we can pick up from the unconscious clues people give off when they speak: the music and the dance, the ‘unsaid’ and I think that alone could be informative and entertaining. Like broken feet (and knees, and a smashed up forearm) and losing our voice however, I’m sure the novelty would quickly wear off. I’d give it, oh, thirty minutes of not knowing what everyone else was laughing at, not knowing what page the teacher was talking about, not understanding the next instruction so having to watch to see what somebody else did first and hope they were doing it right before attempting to copy.

And who’s to say that this discomfort, this frustration, this feeling of melancholy about a world that was going on without us, wouldn’t stay with these children into adulthood? So when the pupil became the assistant behind the counter, the waiter taking the order, the chair of a meeting, they would instinctively keep their hands away from their mouth and look their customer or colleague straight in the eye. With this experience in their formative years, they would hopefully refrain from grimacing, answering in clipped (unintelligible) tones, or talking to you as if English wasn’t your first language and boy, were you struggling to learn. On the end of the phone they might rephrase if the conversation was clearly not going well and spell difficult words using the phonetic alphabet. But most of all, most importantly of all, they would sympathise and do everything in their power to help you communicate, to avoid making you feel stupid and that you were an irritant, in fact, they’d treat you with the same respect they’d treat any other person whose faculties were all intact.

What do you think? Can we make it happen? Shall we try?

I’d like to add that there are many people who instinctively carry out my communication wish list already. To those, I say thank you, this is such a big deal to those of us with hearing loss. Please help me spread the word that people who can’t hear have feelings too. In fact, we rather rely on them.      

Saturday, 16 February 2019

Ah, that's better!

Or it will be, if you help me J

So, I am honoured to have been asked to speak at the Let's Talk About Cancer conference, taking place on 14th March at the Magna Centre in Rotherham. My 15 minute slot is about coping with pain, the patient's perspective.

Now, whilst I know that bowlfuls of sweet white sauce and dancing on the spot worked wonderfully for me when my mouth was full of ulcers and my limbs felt like I'd been picked up and deposited in Luther, where the baddies didn't believe me and used their special vice-like contraption to squeeze and squeeze until I admitted defeat, I realise that my experience may be different from others. I also recognise that we all have our own ways of dealing with these things and that there are probably hundreds of different methods out there for getting through the bad days of cancer pain and the side effects of treatment.

I'd therefore like to ask if you would tell me about them. And I will steal them and pass them off as my own during my talk. Seriously now, dealing with pain is a big deal and in my fifteen minutes, I'd like to mention as many ways and means of dealing with it as possible. Here's hoping this will be useful to at least some of the audience.

If you, or someone you know, found anything from a medication to a holistic treatment or simply a regime that worked as effective pain relief for you, please would you let me know so I can add it to the list? I promise I will credit my blog readers on the day!

Meanwhile if you, or anyone you know, have been touched by cancer and happen to live in the Yorkshire region, places are still available at the Let's Talk About Cancer event. Tickets are free but limited so you will need to register. For more information and to secure your place, click here.
  
And if you do attend, please come and say hello! Most of the day I'll be in the exhibition area with a pile of books, otherwise you'll find me facilitating a group session, or fretting about my imminent arrival on stage…  

Thursday, 7 February 2019

Flold

I’ve just had flu. I knew it was flu because I'd had it in my twenties and it was characterised by the same lead being poured into all my limbs, even my fingers, and particularly my head, over a matter of minutes only to realise that if the house was burning down, I’d have to pray the hubbie was up to a fireman’s lift because I couldn’t move my body, not an inch.

The first time it happened I remember my mum peering at me through the living room window as I sat stock still on the sofa on a fiery hot summer’s day in the long university holidays, sporting the entire home’s stock of blankets. She was wondering why I hadn’t answered the door, used her key instead, took one look at me, asked me to put my chin on my chest and when I could, said, in her indomitable matter-of-fact nurse’s voice: 

Oh, that’s ok, I thought it might be meningitis. It’s just flu.

Just flu? I said, goodness! This was worse than flu!

Flu’s bad, she said, people call a bad cold, flu. But flu is flu, a bad cold is a bad cold.

I remember thinking they needed a better name for a bad cold. Because a bad cold can feel really, really horrible can’t it? But a cold can be anything from a sniffle to confining you to your bed and preventing you from work, so when it’s a bad cold we feel the need to call it something else so that we at least get some sympathy - AKA hot water bottle, Lemsip and a pass out on the dishes – and our manager doesn’t think we’re being pathetic, worse, skiving. For what it’s worth, I do believe the RIGHT thing to do is to stay away from work when you have a bad cold because nobody, but nobody wants to catch your cold so it’s kinder to the rest of us, and you’ll get better quicker, if you give yourself some TLC. Ok? You’re allowed.

How about colflu, flucol, flueyold or, flold. Yes! If you have a ‘flold’ then you are allowed to go to bed without putting on the washing before you go, your team will understand that you didn’t respond to that email and your boss will absolutely insist you don’t set foot anywhere near the office. Sorted.

This post isn’t a veiled appeal for sympathy by the way. I am currently in that post poorly-ness wave of euphoria, where it was almost worth feeling so bad, to feel so good in comparison. Almost. No, it reminded me of one of my questions I have running around my brain that never gets answered: where do these words start? You know, words like ‘peng’ and ‘sick’, or,‘dordy’ (threw in a Newark one there – I’m happy to say that my memory of being 14, and my diary corroborates, was that most things in life were, ‘dordy’) and even, ‘cool’ – that came from someone, somewhere, sometime. 

It’s the words that already have a meaning which bears no resemblance to what the speaker would like them to mean, that I wonder about. Who is the first person to say them and how do they end up being global? I mean, I understand it in the practical sense, a la internet et al, but how does one teen say something’s ‘peng’ in a little country village in deepest darkest Sussex for example, only for it to end up on the lips of a rapper in America? How did one person decide that using a word which described something pretty gross such as ‘sick’ would be a great way to describe something being ‘great’, and then manage to convince everyone else to feel the same?

I realise some of this is generated through the influence of idolised celebrity, but celebs aren’t getting up in the morning and thinking: Hmmm. What new word could I come up with today that, within weeks, will be universally understood by everyone under twenty?

Are they?

Well, maybe it’s our turn to make a mark on the Oxford English Dictionary. What word do you think should exist, but doesn’t…yet? Maybe it's a word only your family knows, or one you misspoke as a child but that makes so much more sense your way...

Meanwhile, my sympathies if you have had the misfortune to develop a cold, flold or flu this winter, and I hope that we all manage to beat off the gremlins going forward.

Stay well, folks!