Keeping it light – Guest Blog

Welcome to the first ever guest blog on ThatChronicPainGuy! The following speaks for itself. If you’re interested in being a guest blogger please contact me. Living with chronic pain, a carer, a friend, a specialist? Let me know, I’d love to have your thoughts and continue increasing awareness of chronic pain in the community. 

Josh. 

I’m Josh’s wife. I’m also his carer when he needs one. Which is less often these days, thankfully.

Over the years I have observed a number of factors that help Josh to manage his condition, distract himself from the pain, and keep a positive attitude. Comedy has a big impact on Josh’s ability to cope. When the pain is at the top of the scale, Josh has taken every pill that he can and is either waiting for them to kick in, or they are simply not enough, I remind him to watch some comedy. He gets some rest and distraction.

On a day-to-day basis he has me… Luckily, I’m hilarious.

Coping with chronic pain requires a strategy that is 50% physical and 50% mental, and that’s just for carers.

I will never understand what it’s like for Josh. It brings me to tears when I try. However, we have all had moments when for whatever reason (sleep deprivation, stress, alcohol, brain fart) our bodies do not cooperate, and simple tasks are ridiculously difficult. This common ground we share. Although, I don’t have the pain to go with it.

I need to find humour in challenging situations in order to lighten my attitude towards our daily living as much as Josh needs the distraction from the pain.

I also have a cheeky, dark humour and often can’t help myself.

On a bad day, Josh often needs assistance moving from one room to another and Chuckles (his cane) often lives in the car for days out. As a result, after assisting him out of the chair/lounge/bed/shower – or sometimes because we enjoy the challenge of the hammock or floor – he will place his hands on my shoulders as I walk in front of him. In this position I have several options. Picture the Conga line dance, one of my favourites; as is ‘can you smell that?’ Sometimes I have to wait a few seconds to get a small giggle. His meds and the pain can delay his cognitive processing but if I get that giggle I know he’ll be okay. No giggle equals the next stage of pain management – stronger meds, massage, sleep etc. It’s useful for me to gauge where he is at without the annoying ‘how are you doing?’ or ‘are you OK?’.

One day we were at the local shops. Josh was having a grumpy, stubborn day and left Chuckles in the car. Sometimes I forget to pace myself with him and end up several strides ahead. For those of you who know us this is funny. Josh is 6” 2 with sexy long legs. I’m 5” and a quarter of an inch, and my legs were an afterthought. I have always had to take two steps for every one of Josh’s. How the tables have turned. On this particular day I was in fine comedic form and turned back to Josh and said, “Come on hop-a-long”. He loves these pet names. As he was a little further behind than I realised I had to project my voice and in doing so caught the attention of two senior ladies who did not approve of my humour and were not shy in expressing it. It’s always senior  ladies…

Josh burst into laughter.

I’m going to assume it was my wit, but his laughter may have been at the shade of red my face had quickly turned. Either way it was a mood changer, so who cares.

Here’s to us ‘Keeping it light’,

The Wife.

Image by Jesper Sehested at https://thedyslexicbook.com/

 

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Kissing it better

“Hey, I need help”, I yelled to my wife.

We are heading out to some function and I have to wear a suit and lace up shoes. The majority of my life now is spent without shoes, I can’t stand them on my feet some days. Back then I was in shoes five days a week for work and it caused me pain on some days. Nobody likes getting stabbed in between the toes all day. Now, we’re heading out and I have to wear special shoes. Tight, leather, lace-up formal shoes. Yuck! I am in agony. I can’t bend my left leg or put much pressure on it.

“What’s up?”, she responds.

“I can’t get my shoes on”, I reply, sitting on the edge of the bed looking at one shoe on the floor that I’d just tried to put on.

My wife appears in the door of  the bedroom with a questioning look on her face. I look up at her and strain a smile.

“I can’t get my shoes on. I can’t reach my feet. I can’t bend my left knee, and when I bend down my lower back spasms and shoots burning pain down my whole left side, into my toes, and… elsewhere”.

“Elsewhere?”

“Yeah, you know. There”, gesturing to my crotch.

“That would be interesting”

“Interesting? It’d be like me holding a lighter to your nipple”, I scream.

My wife stands there looking at me with pursed lips. I can see a wicked smile coming through.

“Do you need me to kiss it better?”, she asks, tongue in cheek.

I may have told her to go away not so nicely, but then we both fell onto the bed in absolute stitches, laughing and laughing like little school kids.

I love this woman.

 

Josh

 

Image by Crycks

Ya cane’s too short, laddy!

Struggling on my very first walking stick through the large park area heading into Brigadoon at Bundanoon. A yearly festival celebrating everything Scottish, in Australia. The closest thing to Scotland here is the weather I assume. It’s freezing yet sunny and the whole place is filled with green grass, the sound of bagpipes, and kilts. I’m not Scottish, neither is my wife really. But there’ s heritage there and her father has researched the family tree going back generations.

It’s fascinating and also telling of Australia’s struggle with national identity. Growing up I was never happy with Mum’s answer to the question ‘Where do we come from?’. She’d say ‘here, stupid’. I knew we were born here, but everyone at school was either Greek, or English, or Asian, or a Kiwi, or Tongan, or Italian, or, or… or something. And being Aussie sort of felt wrong. For me anyway. My mates grandfather was from Liverpool and you were reminded of that every time you visited as you were assaulted by his accent, the threat to knock you on your arse, and the big LIVERPOOL poster in the sun room. He’s a great guy. I wouldn’t mind if he was my grandfather. But he was from somewhere, a real country with heritage. My mate, therefore was from somewhere. The answer to the where are you from question growing up was always ‘I’m an Aussie, but I have family heritage in [insert country of origin here]’. You could be a proud Aussie, but only if you were also from somewhere else. Where was I from? Not just here, surely. I didn’t know at the time. I still don’t have a complete idea of my heritage. Even though education about and attitudes to Indigenous Australians was slowly making changes in national perspective throughout my childhood; I didn’t feel like I was Australian. I still don’t. Not until there’s real recognition of this country’s first people in our first constitution as a Republic, but that’s a long way away.

I digress. I plonked down onto the picnic rug my wife had just placed on the grass, and thought ‘bugger, I’m going to have to get back up again today’. She left me there to mind the stuff, while she went off in search of food. I get ‘hangry’, so does she (Hungry and Angry – Hangry). It’s really a public safety initiative that we eat regularly. Her family then arrived and also dumped their stuff to go and look around, buy food, or use the facilities. The most banal task given to any person in chronic pain and/or with disability is to ‘mind the stuff’. Sure, why not, we’re not going anywhere. I didn’t really mind though. I couldn’t get up, I really wasn’t going anywhere. I had to wait for my wife to lift me up. If any of you have met the two of us, I’m sure you’re laughing at the vision of a five foot nothing, petite little lady lifting a slightly overweight, six-foot two bloke with a walking stick up off a picnic rug. I wish we filmed it.

I was not having a very good day. I probably should have stayed home. I was drugged up to the hilt, and still in pain. Not sitting, standing, laying, or walking was comfortable or reduced the pain. I’d just walked from where we parked to the picnic rug and that was me done. My wife returned with food and an odd look on her face. I won’t say she was scared, but she and I were still learning about my condition and how to handle my massive mood swings. I was predominantly learning how to communicate my needs without being a complete and utter arse. It’s not her fault I have pain. She explained that she had something to tell me or suggest to me but wasn’t sure how I would react. My mouth full, I mimed for her to wait until we’d both eaten as that was probably safer.

Upon completion, we wiped our mouths of greasy fried food and she looked at me, pursed her lips and said, “I found you a new walking stick at one of the stalls”. At this stage of my chronic pain journey, I wasn’t sure how I felt about walking sticks. They’re for old people or disabled people. I’m neither of those. Also, I’d said to my wife, and anyone else who’d listen, that if I ever needed a walking stick I’d have one with a skull on it. Do you think I could find one with a skull when I first needed one? No. I got this crappy red handled old lady cane from the pharmacy. Lame! I was forced to use it this day.

“They have skulls!”, she exclaimed with a big dorky grin.

Things were looking up. Maybe today won’t be a complete waste of time.

After watching some blokes in skirts throw some massive logs around to much cheering and rejoicing of the not so Scottish, Scottish crowd; we sauntered over to the stall area. My sauntering was more like a limp accented by a slightly short walking stick, so I kind of looked like a wannabe American white rapper or a very pale Quincy Jones.

We made a beeline straight to the walking stick shop. Wow! They were everywhere. There were all the classics with a variety of handle styles, full length staff’s, and quad bases (think old guy in Pixar’s ‘Up’). All the classics came with the option of modern polycarbonate shafts, folding shafts, several timber options, and natural shafts made direct from the branches of trees. You could still see the knots in the wood with all the grooves. It was amazing. And then the handles…. So many designs from duck heads, swans, whisky flasks, standard handles, compass tops, and SKULLS! Of these handle styles, all came as either pressed metal, or one-piece handmade, handgrooved timber. They were works of art.

“Ya cane’s too short lad”, said the scowling shopkeeper.

‘Here we go’, I thought.

“Well, what do I need then”.

“One the right size”, he replied.

Before the words ‘No shit Sherlock’ fell from my mouth, my wife jumped in and said quite loudly, “He would like your expertise in selecting one the right size, and he likes black, and he likes skulls. What have you got?”.

Amazingly, the attitude of the shopkeeper changed, and he couldn’t be more helpful. After some perusing and size testing I selected a dark timber walking stick, with a polished skull on top… and the freaking eyes light up! Best walking stick ever.

Skull walking stick

*share pics of your walking sticks to thatchronicpainguy on Facebook and Instagram. 

Josh

 

 

I hate that guy

I am playing golf tomorrow.

You see, I’m not currently working despite my various applications to a variety of local businesses. I’m also a qualified teacher and available for casual work, but teachers only really start getting sick at about week 3 of term. It’s the combined shock of returning to a new classroom you didn’t get time to setup last year, new staff you haven’t yet met but are expected to work with, the new paperwork, the new IT system that’s not yet up and running properly, not to mention the children, and the fact that you’ve made close to a thousand split second decisions and changes to your morning classroom routine and it’s not even 11am!

Sorry… Where was I? Right, casual work. There’s none…yet.

So I am playing golf tomorrow as I haven’t played in over a year.

But my guy is whispering in my ear. We’ve all got a guy, right? You know, THE guy, the ‘are you sure’ guy. Well mine really became apparent once I was diagnosed with CRPS, Complex Regional Pain Syndrome. My guy’s main question or comment is along the lines of ‘Really? Will you now?’.

I will clean the bathroom, then vacuum the carpets today, and still be awake at 9pm. ‘Really? I look forward to seeing that’. 

I’m going to work a casual teaching day, then grab a coffee with friends, and walk the short distance home. ‘Really, don’t you think that’s a bit much?’.

Today’s not a great day, but I’m going to walk around the shopping centre with my wife to buy… ‘Walk? Really? With or without your walking stick? How many breaks will you need? How many “You’re too young to be in this much pain” comments from shop assistants can you take? How will you…”

It’s the doubt creeping in that makes me question whether I can do something I love, WHEN I want to do it. Everyday, there is an element of disappointment. Everyday there is something I wanted to do but couldn’t in the end. Or wouldn’t because that would be borrowing a spoon from tomorrow (look up spoon theory if you’re confused). I wanted to sweep the floors today, but after I’d already washed my bike, organised some stuff in the garage, cleaned the bathroom, and made my lunch; that was me done for the day. I’ve gotten a second wind after my afternoon sleep and here I am using it to write this.

I don’t want to write a ‘stay positive’ or ‘look at the bright side’ blog. Nor do I want to write a ‘my life is so hard’ blog. Because, we all already know all that stuff. Life sucks sometimes, and other times it’s awesome. I’m just hoping you see my social media full of crappy selfies and wannabe artistic photos of golf balls tomorrow.

Josh.

Send me your ‘I had an awesome day’ photos to thatchronicpainguy@gmail.com

 

Photo by Sherwood CC

The day my dick broke – A chronic pain drug story

I was writing a lot leading on from ‘The Journey from Loving Husband to Complete Arsehole’ blog. Listing and explaining the variety of medications I was on, and am still on, or have returned to; and the variety of doses I was taking. I was explaining the many and various side effects I experienced from these drugs. To be honest I was putting myself to sleep reading it. So, instead, please enjoy a short story about one side effect I experienced. This took place sometime in 2013 I think.

I began a new medication, an extended release analgesic. I’d gone through so many different medications by this stage. We were getting towards the pointy end of the medication regime for chronic pain before we moved into the really serious stuff. This med, like all, came with its list of possible side effects. Pfft. Who reads that rubbish?

Anyway, this med – by far – was the single most effective drug for my chronic pain I have taken. It still holds the title. I was back! Not quite functioning to full physical mobility, though my daily pain score was, at the most, a 2 out 10. This was great! A few days into this trial however…

water drops by Smitha Murphy

“Shit, I need to wee!” I screamed at my wife, as I leapt from the dining room table and ran to the bathroom before I wet myself and half the house. Upon arrival in the loo, I stood, just a passenger for the following few minutes watching liquid fall from my flaccid member like an old laundry tap. For any ladies reading, us blokes generally have an excellent early warning signal that we need to urinate. It’s especially present first thing in the morning. A good friend of mine refers to it as ‘Morning Wood’. As the need to urinate intensifies so does the pressure in the little guy. Mini me should be at attention and knocking on my jeans to be let out to release this pressure. But I’ve got nothing. No warning. No pressure. Nothing! It’s broken!

As my little pink personal waste gate slowly drips to an agonising halt, OFF it goes again. It feels like the backup pumps have just cut in and are pumping the rest of the dregs out of the bladder.

WOW. That was interesting. ‘Something I’ll have to try and manage’, I think to myself.

Then I realised something else. If there’s no morning wood, then there’s no wood… anytime. Period.

‘I’ll have to test this’, I thought.

“I’ll be down in a few minutes” I yelled to my wife. Personal scientific test 1 was initiated. Nope, nothing. No standing to attention, no tents pitched, no cockasaurus-Rex, no Homo-erectus… You get the idea. So, I slowly returned to the dining room where my wife sat with that worried look on her face, confused by my hasty withdrawal from breakfast. I then learn that she’d nearly pissed herself too. With laughter none the less, at least I know I have supportive partner.

After we’d both stopped laughing, I sat down at the table and we had a chat, and I explained my findings. We understood that a proper scientific test should be repeatable, and at the very least peer-reviewed; and have the same result to be proven true. Therefore, SUPER personal scientific test 2 began over the coming days.

It was unfortunately proven… a few times. Well a few more than just a few. On a number of different occasions we tested the theory to see if I would get used to the drug or if a slight change in dosage would work. It didn’t.

Suffice to say I scrapped that awesome drug pretty quickly. Back to square one.

Josh.

New to this blog? Read my first.

Featured Image by Jonathan Rolande 

Text based image by Smitha Murphy

Codeine and the changes in access for Australian patients… my thoughts

If you’ve been watching my social media feeds you’ll be well versed in the issue that surrounds the removal of Codeine as an OTC (Over the counter) drug. I’ve commented, shared links, put my own two bobs worth in where it’s probably not wanted or even cared about. I also have this blog which allows me the time to consolidate my thoughts on the subject.

But first, I do not recommend any drugs at all. I DO recommend you see a GP or specialist if you have any type of pain, be it chronic or otherwise, and get the pain relief you need.

Now that’s out of the way; I’ve been trying to work out how to adequately respond in my Thatchronicpainguy way, whilst also being fully aware that the chances of anyone of high repute in this debate reading my response are None and Buckleys!

So, who cares?! Well I do, but I don’t. The deal is done. This happens on Thursday in Australia whether we like it or not.

Then I had a thought. Be selfish for a minute and put every other pain sufferer aside, just for one moment. How will this impact me? Really.

  1. Not much to tell you the truth. I don’t take that much Codeine. However, needing to see a GP is going to cost me more in medical bills and fuel costs. Is that too much? For me, no. I have easy access to a GP and a pharmacy. In walking distance (assuming I can walk that day).
  2. I’ll revert to using my other opioid medication that has different side effects I hate but can live with if I have too. That drug works better at reducing my breakout pain. It’s the side effects I don’t like. So I tend to use Codeine instead.
  3. I have a very supportive partner, and I am generally physically and mentally capable of advocating for myself, getting myself to a GP, and explaining myself to pharmacists. (Case in point – we moved to our new town a week ago and I’m already on friendly terms with the local pharmacist).

Which brings me back to other pain sufferers, who may not be as lucky.

Where does one begin… I know.

A story.

(Read aloud as Ringo Starr, narrator of Thomas the Tank Engine the original series)

There once was a middle aged chronic pain sufferer (CPS) who lived alone in an outback town, hundreds of kilometres from the closest GP and even further away from their pain specialist who was in the ‘Big Smoke’. There’s no public transport and the CPS doesn’t trust themselves behind the wheel on a bad pain day.

On a particularly bad day, the CPS has taken their daily medications, as well as any prescribed ‘breakout’ pain medications like Codeine. (They can’t take ibuprofen because it may make their asthma symptoms worse, and it may interfere with their blood pressure medication). The CPS suddenly realises they are running low on Codeine. Their condition, as well as the cocktail of pain relief they take, effects their cognitive function, and their memory is severely lacking.

‘Oh no’, said the CPS. ‘Whatever shall I do?’.

There was nothing the CPS could do that day, except hope.

Hope to have a good day tomorrow.

Hope to get an appointment at the GP or clinic.

Hope to not have to wait too long in pain in the waiting room.

Hope to remember all these thoughts as their medications take hold and they drift off to sleep.

Sleep; their only reprieve from the pain for at least a few hours… hopefully. 

A bad story I know, thankfully I’m not a fiction writer. But it illustrates a reality that many chronic pain sufferers will have to try and overcome as of Thursday.

Fixing a system that needs an overhaul with a broken system? That’s not the right thing to do. However, I do not have the answer. There are so many things to consider in this issue. This whole ‘pain epidemic’ is a mess and needs proper funding and support to supply patients with proper pain relief that works. But not by making it harder to access what pain relief works for us.

Josh

Pic from http://www.news.com.au/lifestyle/health/pharmacists-say-codeine-crackdown-a-hardtoswallow-headache/news-story/1d475d05edae128e339e01a2a66fcf53

A journey from loving husband to complete arsehole – A Chronic Pain Story

The Dr asked, ‘Has he changed?’. Tears welled up in her eyes. ‘He’s not the same man I married’, she said.

What have I become? I know I get a bit testy now and again, but she just said I wasn’t the same man she married. My beautiful wife then rattled off a list of changes to my personality – ‘he’s short tempered, road rage is off the chart, he breaks things, he falls apart and cries at the most insignificant of things,… he dented our fridge with his fist – what if I’m the closest thing next time he wants to hit something?’.

This was about five years into the journey of my chronic pain. Allow me to start at the beginning. I’ll probably forget something because I’m writing this after we’ve just moved to a new house, my whole body aches, and the painful bits are quite angry!

2007 – I developed an inguinal hernia for a variety of reasons – namely, a genetic predisposition to a weakened abdominal lining, lack of exercise, bad diet, straining in the bathroom, and lifting too heavy weights.

2008/2009 – after seeing my GP and one specialist, I booked in to have the hernia repaired. The specialist surgeon rattled off my options, which were none. He only did the surgery one way, which was the traditional way of a clean incision, air pumped into the abdominal area, the hernia repaired with a gauze patch, and sewn back up. No keyhole style surgery for this guy. He glossed over the risks – I had no choice but to do the surgery, so I wasn’t worried. How bad could it be? In recovery the surgeon mentions the complications he encountered during my surgery. A junction in the Femoral nerve had to be split to allow the placement of the patch and to allow everything to be put back in properly. When I say split, imagine your nerve is a piece of bacon. Make a small cut at one end in between the rind and the meat. Now pull it apart. He then reminded me of the statistics we spoke about pre-surgery – that about 1% of patients experience ongoing pain.

Two weeks post-surgery and the surgery site was blown up like a balloon and I was limping around like an old man. The surgeon has to syringe the site clear of fluid build up. The surgeon had previously spoken of other patients who were back at work within a week. I was not one of those. He mentioned the possibility of ongoing pain but to give it 6 months and I should be right! From that point I just got on with life.

2010 – My wife and I began noticing small changes in my ability to do certain tasks, and how fatigue was impacting my daily life. I was a student at the time, and working in a pub. My confidence lifting really heavy items was waning, as was my balance and ability to ride my bike. I was becoming very clumsy and always banging my left knee and leg. This is when my wife suggested we see the GP for a long visit and try to find the underlying cause of it. After many appointments, a sleep apnoea test, blood tests galore, and a full physical; our favourite GP ever (we live 5 hours away now and intend to still see her at least twice a year!) suggested that the issue was pain due to nerve damage. She had done her research since our last visit and had spoken to a pain specialist friend of hers. Turns out, my original specialist’s stats were wrong! The likelihood of any ongoing complications from inguinal hernia surgery is closer to 13%. Of that 13% approximately 10% of patients will have severe ongoing pain. What’s even better is that they don’t know why… That’s right – two patients, identical surgeries, both have nerve junctions split like bacon rind. One walks back into work in 5 days…

and the other is me.

An arsehole about to begin the drug journey of chronic pain.

Josh