The Office… job.

So lot’s has been happening as we’ve settled into our new north coast home. I haven’t blogged for AGES…. But let me explain why.

I got a job!

I already had one, sort of, but working casually as a primary school teacher is probably one of the worst jobs around.

I applied for and got a job working in an office. I know what you might be thinking… Ricky Gervais ‘The Office’…. Am I right? Well that pretty much sums it up actually. A basic officey job answering phones, talking to clients, and generally fucking around while you get paid.

My main point here is that I was able to prove to myself I could work. Not just work, but full-time work. It might not sound like much but let’s put this in perspective. In early 2016, I had to leave my job due to my pain. I was then out of any work for over 5 months before I had surgery. The surgery worked but there was the 12-week recovery time, stitches out, detoxing from some pretty strong meds, and getting used to managing pain with a computer. I prepared myself enough to try working again in a similar field. I did 3 days. I hated it. I was stressed, my pain increased, I couldn’t work all day then back it up again the following day. But I tried again anyway, did another day of work, but paid for it badly the next day – too much standing, walking, squatting. Too much brain power required. My meds were still a bit intense then and were obviously having an impact on my cognitive ability – this I would work out months later. Despite these failures at working I had my life back. So we through in the towel and took off around the country. The trip was hard, a long 12 months, but I could rest when I wanted and needed, and we only travelled when I was physically capable. That entire year from Dec 2016 to the following Christmas I gradually increased my stamina and we were able to travel more regularly with less breaks and I was having less bad days. I was also getting used to managing the neuromodulator (Richard is his name), working out when to turn down or up, off or on, and what physical activity I needed and when I required rest.

We returned to NSW and started a new life on the mid north coast in January 2018. I didn’t get a full-time job until June of 2018 (totalling over 2 and half years without full-time work). I wasn’t sure I could work. To be honest, despite my efforts – which certainly were not my best – I really wasn’t sure what I wanted to do, what I could do. I’d reverted to 4 months post-op in my head. The pressure, the stress, the pain. I started going backwards. Not just backwards in the way of increasing pain again, but mainly decreasing confidence and borderline depression. My thought processes started becoming ‘I can’t…’ instead of ‘I’m not sure I can…’. It seems only minor, but that frame of mind is vastly different.

With the help of the best little wife in the world (she’s a tiny 5 foot and quarter of an inch), as well as some extremely well-timed phone calls from local schools asking me to teach casually, I started to get back on track. Over the course of about 10 weeks earlier in 2018, my confidence in my abilities was returning, my confidence in my physical ability to do a job for more than 1 day at a time was increasing, and my recovery time from working all day lessened. I walked to work. Yes, WALKED. All the way there, the 2.5km there. Walked back home at the end of the day too. Then stayed awake. Then cooked dinner! WTF! I then crashed and slept until 10am the next day. But that’s not the point, the point is, I did something physical I hadn’t been able to do properly in years (in crappy work shoes), then worked all day, walked home again, and still had the spoons to stay awake and cook dinner! This is AMAZING!

It’s now September 2018 a bit over 24 months since I had Richard implanted, and about 5 months since I walked to work one day… and things are still changing. I’m still adapting to what settings to put Richard on, what activity to do, when to rest, how to manage stress from work, how to be a good husband, and how to contribute to my relationships with my wife and friends. But I’m working full time. FULL TIME! 8:30am until 5pm, 5 days a week. I still cook dinner some nights. Some nights I’m almost asleep in the passenger seat as my wife drives us home. But hey, everybody has long days and gets tired.

And another thing, Richard can’t be turned down any lower regarding modulation. This means the next setting is off. But more on that later.

Cheers,

J

Side note: be listening in to Alan Jones on the radio and stay on the news feeds about the changes to private health coverage in Australia. The changes, due in April 2019, could mean that the life changing and saving surgery I was approved for on my ‘budget hospital’ health insurance product may NOT be covered in the future unless you hold top level or GOLD hospital health insurance. What does this mean for other people in my situation? For you? Your family, friends, and loved ones? This could happen to anyone!

If I wasn’t covered at the time, I don’t know whether I could have afforded the top coverage, and whether I could wait the 12 month waiting period… In all honesty, I probably would have found a tall bridge…

 

Photo By Ben Tesch

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Confession: It’s been 24 days since my last blog.

Twenty-four days… really… Whoops. There’s been a lot on. I’ve been applying for jobs. Enrolled in University distance education. Went to Sydney and back again. Lots happening. I’ll take you back to January of this year, and then fast forward to about two weeks ago.

We returned to civilisation after the best year ever. If you didn’t know, we took a year off and travelled Australia. Best thing we ever did. It was also one of the hardest things we’ve ever done. But I’ll save that for another blog and probably the book. Anyway, we did the whole Christmas thing and met up with friends and family and started trying to get our lives back in order. My gorgeous wife applied for a teacher transfer that was taking us to the mid north coast of NSW, so we could continue the adventure to some degree, but mainly to change things up. We didn’t want to return to what life was pre-awesomeestyearoffever. She put a transfer in for the whole state of NSW and they sent us to live beach-side under five hours from Sydney. THANK YOU, Department of Education! So, there we were in Sydney collating our stuff from storage and friends houses and desperately trying to secure a house to live in near her new job. In amongst the travel in between our new home and Sydney, we were catching up with people, with friends, with family, repacking, organising, selling stuff, and seeing GP’s and my Pain Specialist. GP stands for General Practitioner here in Aus, your general family doctor.

To the point. I’ll get there, I’m sure.

I met with my pain specialist in early January and he prescribed me quick release Tramadol for breakout pain. This way I could come off any use of Codeine. The Tramadol was effective for me as a slow release medication some years ago and we thought the QR version would also be effective for breakout pain and be less harmful long-term than taking regular Codeine. However, I experienced side effects I’d never had before from Tramadol, namely an elephant on my chest and the feeling of pure dread. So, I went back to Codeine for the breakout pain until I would meet with my pain specialist in a few months. But… I experienced the exact same side effects from Codeine that I did from Tramadol, to a lesser degree but still the same. So, I’d gained a new way to manage pain only to lose it, and then lose the one that was mildly effective from earlier. What the hell?! This is one of those things that happens apparently. Side effects from one medication can impact what side effects one experiences from another medication. Weird.

So, I waited a few months without effective breakout pain medications for my next pain specialist appointment in April. After that appointment about two weeks ago, I’m now back on Palexia or Tapentadol for breakout pain, and an old medication from years and years ago I’d forgotten I’d ever been prescribed, Amitriptyline. Amy, we’ll call her, is technically an anti-depressant but only at dosages of 125mg or higher. I was prescribed just 25mg nightly. The aim was to help me get to sleep and to stay asleep. My lack of said sleep was really starting to take its toll. Well, did this stuff work or what?!

I was talking to my wife commenting on something on the TV. I’d said my bit and continued to watch. A few minutes later she asks me,

‘Are you tired?’.

‘A little, why?’, I asked.

‘Because your eyes are closed’.

The words ‘they are not’ were just about to explode from my mouth when I realised she was right. I had to really concentrate to get them open again. Wow, I am tired, I thought to myself.  I finally got my eyes open and moved to get myself into bed. My gorgeous wife, to the rescue again, helped me remove my shoes and socks and change for bed, then tucked me in. I was zombie like, catatonic. It wasn’t even 8pm.

I didn’t wake until almost 9:30am the following morning.

After visiting my GP later that week, I got a new prescription for 10mg doses of the new sleep med. This proved to be much less effective, and more so too.

Josh

 

Photo: Stewart Black I like it because I shoot the opposite! J

How a walking stick can be an international sign for MOVE!

*Warning: This blog has got some CUSSING in it.

During the worst of my pain I was regularly reliant on a walking stick. I still am to a degree but not as regularly. To be honest, I kind of miss it. I don’t miss the funny looks, the ‘helpful’ people holding doors and ‘offering assistance’, and the ‘you’re too young’ comments from well-meaning strangers with pity to spare. I DO, however, miss people GETTING OUT OF MY FUCKING WAY!

Look, I’ve got a pretty good resting bitch face at the best of times. I have a slight down turned lip, a blank stare, and the sudden way I close my eyes as a pain flare hits me also looks the same as someone about to unleash with toxic vitriol not seen since the ‘No’ campaign in the marriage equality debate. Combine that with my love of black T-shirts, caps, dark sunglasses, skate shoes (I don’t/can’t skate), a few tattoos and piercings, and I’m the poster boy for a grown man still rebelling from his teen past. I just also happen to have a big stick with a skull on it. This was where the stick came into its own. I get funny looks as I walk through a shopping centre. Everybody does. Everyone looks at everyone. We all judge each other, that’s OK – ‘I like her hair – his shirt is cool – he’s an angry looking bloke – do I look as fat as that guy?’. But when people see the stick they suddenly rethink their assumptions about me. You see the split second confusion. ‘Tall, angry looking, slightly overweight, black tee, …walking stick. Wait, what?’ They move. Generally, they move out of the way. Some do the whole awkward dance thing which I too have been guilty – go left, faint right, side step left and through! But they move. It’s great. I’ve spoken of this before with a Moses reference. The way made clear for my travel to the promised land. Or, in my case, the coffee shop.

I don’t like crowds. I don’t like shopping centres. I don’t like how drivers generally follow the road rules of ‘keep left’ in Australia, yet it’s a fucking free for all everywhere else.  (There should be lane markings in shopping centres). Really, I just don’t like people. I hate IKEA! But when I have my walking stick Chuckles, that’s his name, it’s a different ball game. I could walk in a straight line all the way through the shopping centre, the street, the crowd. I would be bestowed so much room it was embarrassing – ‘I’m not that fat, am I?’. My wife was less stressed too trying to guide me through without me falling or having someone bump my leg. Those were the days…

But now, I’m in less pain. I’m still IN pain. My function is still decreased. I have bad days, a pain flare. I overdo it physically one day, then pay dearly for it the next. It’s just generally not quite as bad as it once was. Before the implant, tripping and landing awkwardly on my bad leg would take me out for the rest of that day and the next – every time, no questions asked, down for the count. Now, the same trip and awkward landing, results in me upping some pain medications, adjusting Richard (my implant), a nap, and maybe having to use Chuckles the next day. I can still function and do stuff by myself.

So, it’s different now. I don’t always NEED Chuckles anymore.

Or do I? Is it a public safety precaution that I have Chuckles when I’m in crowds? Is it OK that I like having him with me? Chuckles is my flashing neon sign. My megaphone yelling ‘move along, nothing to see here’. My silent sign causing onlookers to look at me weirdly and then move. Does Chuckles make my invisible pain… visible? Legitimate? Real? Or do I just like my path made clear to the promised land of caffeinated beverages and caramel slice?

Josh

Photo: Emmanuelle Gerun

Guest Blog 2 – Robyn from Limberation

Welcome to ThatChronicPainGuy Guest Blog 2. Read on and learn a bit about Robyn, her conditions, and her work helping others with chronic conditions. Josh

Robyn Limberation

Robyn Dunphy is an accountant and IT professional who retrained in Exercise Guidance when she developed autoimmune arthritis, among a plethora of other medical conditions. Firmly adhering to pain management through exercise and re-conditioning of the body, Robyn wanted a new career with lots of movement (not lots of sitting as accountants tend to do). Robyn is now an exercise guidance professional, specialising in assisting people with chronic medical conditions.  Robyn holds a Bachelor of Business Administration, is a Certified Practising Accountant and has attained Certificate III and Certificate IV in Fitness. Robyn also holds the required Working With Children Check and First Aid certifications and is a professional  member of Physical Activity Australia and Move. Robyn writes about managing pain through movement at Limberation

 

Well, there’s professional Me. Here’s actual me in terms of medical conditions…

  • rheumatoid arthritis (but maybe psoriatic arthritis, or both) (autoimmune)
  • hyperactive thyroid, multi-nodular goitre, Graves disease (autoimmune)
  • diverticular disease (most of us have some degree of this, by the way)
  • bulging disc, lumbar spine
  • herniated disc, lumber spine
  • arthropathy and hypertrophy of various facet joints
  • scoliosis lumber spine
  • sliding hernia (doesn’t bother me)
  • photosensitive eczema (result of medications)
  • other skin stuff going on (medications again)

Impressive huh? And that’s after I’d already lost all the “optional extras” (as one professor put it): tonsils, appendix, uterus, gall bladder.

Your doctor may have told you to get exercise. That’s probably the last thing on your mind. You’re sick, permanently, and you’re being told to exercise?! Well here’s why.

If you’re not a professional athlete, then I’m going to assume you are a desk jockey and have been rather slack about exercise in the past. Maybe you don’t even own runners. Or shorts. Do you even know where your local gym is? Don’t worry about that yet, we take this in small steps.

You may be asking yourself “How tough is it really, to get moving?” How tough (or easy) will depend on:

  • your specific condition,
  • were you diagnosed early and therefore received appropriate medical care early,
  • your pre-diagnosis level of activity,
  • the medications you are on,
  • the symptoms you specifically experience.

“But”, you cry, “why does it have to be exercise? I’m hurting! I have no energy! I’m tired!”

The objective of moving is to prevent de-conditioning. De-conditioning can lead to more pain.

Deconditioing Robyn

 

MY RE-CONDITIONING JOURNEY

I’ll share some of my own journey but as you read please be aware your situation may be entirely different. What applies to me may not apply to anyone else at all.

I wasn’t completely starting from scratch – while I’d had an activity hiatus for roughly four years, I did have a gym junkie background to leverage. Or so I thought. In the beginning it certainly didn’t feel like I was leveraging anything!

So, what did I do? I should have started with stretches, but at the time I didn’t know that – so please start with stretches! I outline a good basic stretch session in “Let’s Stretch”.

AT THE STARTING LINE

When I started (late 2014), I started very slowly. I did five-minute walks four times a day. It didn’t take me long to realise I felt better when I moved. Pain and stiffness receded very quickly once I was MOVING. I increased to ten-minute walks, three times a day. Finally, I got to twenty-minute walks, twice a day. No amount of activity is too small to start.

I didn’t do any strength (resistance) work at all in the beginning. I added some swimming: gone were my 2.5 km sessions: my physio was advising I swim 250 metres. I mumbled and grumbled that 10 laps wasn’t worth getting in the pool for, but I did stick to her advice the first time. Listen to your physio (or listen to me), don’t hurt yourself trying to push too hard.

RESISTANCE WORK

Weights RobynIt wasn’t until late 2015/early 2016 I got back on the weights. I’d always liked the leg press but had no idea what I should try to start with. Prior to the autoimmune arthritis and the hyperthyroid diagnosis, I’d been diagnosed (by MRI) with meniscus tears in my left knee, not a lot of cartilage to speak of and I’d had a Synvisc shot. I was understandably cautious, but knew I was continuing to lose muscle strength which wasn’t going to help me long term at all. I needed strength to support my joints, especially the damaged ones.

I loaded 10 kg weights on either side of the leg press and felt SO frail. I was in my school gym – most (not all) fellow fitness students were athletic and I felt like I didn’t deserve to be there. I upped the weight to a total of 60 kg quite quickly. From 60 kg to 100 kg took quite a bit longer. If I recall correctly, I got stuck around the 80/90 kg mark for quite some time.

OTHER CONSIDERATIONS

 

Sometimes progress stalls. I find I lose gains very quickly if I miss a strength workout. Whether this is due to medications, the conditions themselves, my age (yes, I do have to consider that these days) or a combination of all three, I’m not sure.

In late July 2016 I had a change of medication. I found this helped dramatically with the fatigue and therefore it has helped all the other aspects of my re-conditioning.

OBJECTIVE ACHIEVED!

As you can see, it isn’t achieved overnight. I’ve worked at it. Slowly, but surely, I’ve achieved my original goal: to stay off pain medications.

Thanks,

Robyn.

 

Disclaimer: This article is based in part on personal experience and is of a general nature, not tailored for any individual circumstances. Where appropriate, readers should seek medical clearance before embarking on an exercise program. 

 

Photos: Provided by Robyn

 

Want to be a guest blogger? Contact me! Whether you live with pain, know someone with chronic pain, and/or help people with chronic pain – it’s all valid and useful. No subject too small or big, or too funny or not funny enough! Write me and we can collaborate. Cheers, Josh. 

 

Book section – Loss and Gain… and Loss Again.

You’re about to read a section of a chapter in the book I’m writing. Feedback welcome. *Language warning* (There’s only one naughty word).

It’s 2013, I’m working in my new-ish job of teaching students with special needs at a school for moderate to severe intellectually disabled kids. I was pretty good at it. I had been approached to work 1:1 with a particularly violent, severely autistic young man. The truth is more likely that nobody wanted the job, the school was at their wits end with what to do at this point, and the parents – rightly so – were kicking up a massive stink. I just happened to come along at the right/wrong time and I liked the idea of earning money. I’d only been out of uni for a few months and had a mortgage, a v8 ute, and a penchant for golf stuff I didn’t need. Adam*, my student, was an absolute handful and the most awesome young man I’ve taught in my relatively short teaching career. He was funny, cheeky as all hell, and he really wanted to learn and master every skill you tried to teach him. At one point there were three staff including me solely working with Adam. Each day was absolutely exhausting.

During my first term with Adam, we were engaged in at least one physical altercation with him per day. These went from relatively minor to full blown physical assault from Adam. We were trying to understand his triggers, learn his anxieties, the warning signs, and try to build trust with him. Using sign language, and other physical, and pictorial cues we could help Adam to self-calm.

Unfortunately, it often did not go well. At least not at the beginning. On my first day with Adam I went to the GP after work to check if I had a broken nose. Fortunately, over time we began to see improvement. Adam was becoming less agitated and anxious. He began communicating his needs and wants, making choices and was able to start controlling a variety of aspects of his daily school life. The instances of physical restraint dropped considerably from daily in the first term to only two separate occasions in the final term of that school year. The aim was to have Adam in a class with other students the following year. We succeeded. HE succeeded!

I could talk to you about Adam all day. His successes, his cheeky nature, his uncanny ability to finish a 500-piece puzzle he’s never seen that’s black and white, and upside down.

During this time of personal growth, learning to be a better teacher, teaching a whole bunch of awesome kids; I was slowly becoming aware of my own pain, my own disability. I was losing my ability to function in society.

It was a long journey. I’d been in pain since the original surgery three or so years earlier. But from 2013 it was getting progressively, and noticeably worse. I was visiting my GP regularly, increasing my use of ibuprofen and paracetamol to almost maximum daily levels 7 days a week, and having increased time off work as, some days, I couldn’t get out of bed. I would regularly show up wearing a knee brace on my left knee. This gave me support as my knee became very clicky and I couldn’t always feel my leg properly or trust it to hold me up. I would randomly, and still do, lose control and feeling for a second. This resulted in a number of sudden falls. I even went down the flight of steps at our mountains house, it was a long fall.

I continued working/struggling in my teaching role for three years. In my fourth year of teaching in 2016, I had used ALL my sick leave by week nine in the first term. Teachers get almost twice the amount of sick leave that most workers get in Australia due to the rates that children bring viruses and such into the school ground. Add to that an overworked, underpaid, hectic job that never really stops unless you’re asleep. Even then you dream about doing something better or miraculously having a paid day off to organise and write reports. So, you could say I was struggling a little. There were lots of things happening. We’d just moved out of our mountains house, planning to build on a flat block south of Sydney while living in the Southern Highlands, I was travelling an hour plus to work and considering a transfer or applying for a teaching position closer to home, and struggling to fit in specialist and GP appointments around work and my ability to stay awake. Then at the beginning of term two I had my first anxiety attack. You’ve probably already read about that. From that point I basically fell apart. It was like all the pain and exhaustion from the preceding years had all caught up with me and unceremoniously knocked me the fuck out.

Josh

Photo by Kevin Dooley

*not his real name, Adam that is…

This is my spot

It’s our ‘friends Christmas’ celebration at E and B’s house. The ‘friends’ celebration involves my wife’s two girlfriends from uni days that have stayed in touch over the years and can definitely be called BEST friends. So much so, we’re kinda stuck. Not really. We’ve all grown and developed as friends together. My wife and I have been together since we were 16 and I’ve gone through the process of meeting her friends, then her uni friends, their boyfriends, two of whom eventually became husbands, then their kids. We’ve holidayed together, helped each other with home improvements (E… 😉), babysat their kids, gone to each other’s weddings, laughed at each other’s vehicle purchasing choices, complained about the distance we live from one another, and the list goes on.

These awesome friends of ours were also some of the few close people who watched me slowly fall apart. They helped my wife out when she was at her wits end dealing with an arsehole husband who was in pain but had no idea why. They came to our house when I couldn’t physically go to theirs. They asked questions and tried to understand my situation to try and help. They were cool with us cancelling or changing plans last minute, even though I know it’s annoying as hell. You’d never know they were frustrated with me for doing that. They’re awesome.

It was this Christmas celebration a few years back that I really noticed my impact on them. But it took a kid to show me. This was pre-implant and I was on some heavy medications. I was sitting in the comfy recliner chair in the lounge room that was always offered to me each time we visited E and B. It kind of became mine during each visit. Told you, awesome friends. I had left the dining table as I was in agony having sat on those chairs for too long, and I was exhausted. The afternoon was wearing on and I was due soon for my next med. It couldn’t come quickly enough. I was angled back in the recliner staring at the TV that was playing some kids show. Miss M, E and B’s daughter of about four or five at the time, had been watching it. I noticed her glancing in my direction semi-regularly. I gave her a strained smile. She smiled back. She’s a cool kid.

“Is Josh ok?”, Miss M asked my wife.

I opened my eyes. I must have drifted off. The same show was playing but Miss M was no longer in the lounge room. I checked my chin for drool. Nope, clear. Haven’t passed out for too long.

“He’s just a bit sore darling”, She replied.

“He’s sore a lot isn’t he?”.

“Yeah, he sure is”.

Miss M, obviously happy with that response, returned to the loungeroom. Next thing I know I’m being handed a pillow from one of the other chairs. No explanation. Just handed it over, threw a quick smile, and went back to her TV show.

Coolest friends make the coolest kids.

 

Josh.

Photo by Charles Williams

How a panoply of prescriptive drugs prevents proper thought processing.

In 2017, we travelled Australia after my successful neuro modulator implant. The implant helps to manage the nerve pain I experience. It’s not 100% effective, but I can do most things on most days. I still have bad days though. I’m also still on some medications that hinder cognitive function. Throughout that year the word Probiotic was my Kryptonite. I still struggle to remember this word today, and to pronounce it properly. This was a source of comedic value for my wife on some days as she prompted me with other P words, until I told her to piss off and tell me what the word was.

The medication I’m on is an anti-epileptic or neuro inhibitor that slows down the neural pathways and chemicals between the brain and nerves. It reduces the pain signals from my damaged nerve. A common side effect is a slowing of cognitive function – thought processing. This slowing is even more noticeable when I’m having breakout pain. Pain that my normal medications and neuro modulator can’t fully control. All my brain power is focused on doing the necessary things and nothing else. My wife has been known to wait up to a whole minute for my response, that’s if I don’t forget halfway through.

As funny as this is, it is also one of the most frustrating parts of managing a complex condition. I’m not trying to float my boat, but I’m pretty smart. I’m no Einstein but I go alright. I used to be able to talk to people easily and I was confident in using a variety of words to illustrate my point. Enter this drug, and I felt like I had been reduced to a ‘bimbling, bumbling, … baboon [sic] (I hope that quote’s correct, my wife and her HP loving friends are going to love this). Anyway, I felt like I was stumbling my way through conversations, sweating up a storm trying to focus on the words coming out of the other persons mouth. As I was speaking I was getting side-tracked racking my brain trying to remember the word I actually wanted but had to substitute. This gets even worse if I’m having breakout pain. I feel like I’m reduced to babbling idiot. A toddler could do better.

I’ve been on the neuro inhibitor for the longest period out of all the drugs I’ve been prescribed. It’s the most effective with the least amount of liveable side effects. It’s certainly not the best drug when it comes to pain reduction, but it takes the edge off the bits the neuro modulator misses. However, it does almost nothing for breakout pain and I don’t like taking the special breakout pain meds due to… you guessed it, side effects. Though the special med reduces breakout pain it replaces the pain with an elephant sitting on your chest and erectile dysfunction. It’s just backwards. But sometimes I’ve got to make the call as to what’s more liveable in the moment.

What would you do?

If only this could be fixed with probiotics.

 

Josh

 

Headline photo by Me! Taken this exact date 1 year ago. We were on the Old Eyre Highway in Outback SA. All by ourselves.