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Damian Hayes

@thevoyagethroughthemaze

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27 years chronic pain. 25 years of research including every form of medication, procedures and tests, leading to writing a practical strategies book.

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A Day in the life of a Chronic Illness/Pain sufferer:
6pm:

Arrive home to find the council rates bill has landed - $2,600.

Our initial shocked reaction quickly turned into a smile, realising funds were in hand in our Bill account to cover. An expected bill, so all good as we put aside funds each fortnight to cover. Some surplus monies are also regularly accrued for overruns and unexpected expenses. One less item to worry about!

We find an emotional release is very therapeutic however not unnecessarily.

Dinner prepped quite quickly as being awake @ 3am this morning (when we also indulged in some ice-cream - yum), we did the slicing and dicing to be ready for dinner this evening.

7pm comes and goes with dishes done and ready to find some rest, when a crazy migraine kicks in.

In the past we would grab some pain-killers, but no more. Far too many tried and failed in the past.

For us, they provided no relief so with our doctor’s consent, we now take no medications whatsoever. The side-effects can be worse than the illness.

Bed time soon. Can but hope for a good night 😊

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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16 hours ago

A Day in the life of a Chronic Illness/Pain sufferer:
4pm:

Home time is coming, however unfortunately the compulsion to throw up has returned. The flare is making a comeback. We simply cannot leave work as all hands are needed on deck to wrap up the day. What do we do?

Our time on duty in the army comes to mind. One day we copped an injury. Blood everywhere. What happened next?

Hmmm, if we are injured on duty in the army, the CO (commanding officer) issues the order “walk it off soldier”.
i.e. just keep going. So, this is what we did.

We quickly wrap up the injury and keep moving. Okay, time to apply this here. Just push it aside and keep going, with home-time coming being the incentive.

Home time arrived. Whew!

Workplace responsibilities completed. Now to work our way through traffic and commence the evening’s entertainment.

Am already thinking about that super comfy spot to try to bed down for the night. Glad we made the bed/chair this morning 😊

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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2 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
2pm:

A rough day so far, more than half-way through, although we never thought we would think this way as we can function at a workplace we selected in a fashion that can be enjoyable. Not so much when we are feeling lousy.

Certainly the distraction provided can take our minds away from our many ills, and it usually provides some financial resources to assist provide for our family.

We probably need to stop looking at the clock as time will slow down again. Yes Albert, we are starting to understand your theory. We also know you did not 100% prove your theory. Never mind 🫣

Fatigue is definitely setting in from our invisible illness. Glad the flare mostly settled however it drains the little energy we have. May struggle to get home.

During the early days of dealing with this illness, the unpredictability was disturbing.

Over time, we get to discover the wide range of wondrous experiences that come along for the ride.

Unfortunately there are still more surprises in store. Maybe this is the reason we do not like surprises.

And we are back to the more predictable work environ 😊

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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3 days ago

Continued:

The more personal sections give the book its emotional depth. Hayes writes openly about sleeplessness, frustration, work, family, isolation, anger, embarrassment, dark thoughts, and the strange negotiations that chronic pain forces into relationships.

He also brings considerable humor to the subject, especially through Des and Hope, the characters he creates to represent Despair and Hopelessness. By giving his tormentors names, he creates psychological distance between himself and the pain, then introduces Sunshine and Starshine as counterweights. That imaginative streak reaches its fullest expression in the “Voyage of Self-Discovery,” where Hayes mentally plays rounds of golf and lets each hole unlock memories, stories, lessons, regrets, and moments of gratitude.

It’s an unusual idea, but within the larger book it makes perfect sense: attention, imagination, memory, connection, and storytelling all become tools for reclaiming territory that pain has occupied.

What stays with you after finishing Chronic Pain is Hayes’s insistence on participation in life. His approach is grounded in experimentation, self-awareness, relationships, professional medical support, and the willingness to keep adjusting when circumstances change.

By the closing chapters, the maze of the title has become more than a description of chronic pain. It represents the continual search for routes through difficult days, along with the recognition that a worthwhile life can still contain friendship, humor, usefulness, curiosity, adventure, and joy.

Hayes asks readers to pay attention to what still belongs to them and to keep using it, one decision and one day at a time. A warm, inventive and deeply lived guide to reclaiming a life that chronic pain keeps trying to shrink. by @thevoyagethroughthemaze

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3 days ago

Damian Hayes’s Chronic Pain is part personal account, part practical handbook, and part companion for people trying to build a life around pain that refuses to behave predictably.

Drawing on more than two decades of experience, Hayes takes readers through treatment options, sleep problems, relationships, work, diet, exercise, emotional strain, and the countless small adjustments that become part of everyday life with chronic pain. What gives the book its character is the way medical research sits alongside moments from Hayes’s own life, sometimes serious, sometimes funny, and often recorded in the middle of another difficult night. The result feels less like being lectured and more like sitting beside someone who has spent years exploring the maze and is willing to share what he has learned.

One of the book’s strongest qualities is its practicality. Hayes examines conventional and complementary treatments, but he also spends considerable time on the ordinary things that can make an exhausting day more manageable: pacing activities, finding somewhere comfortable to sleep, taking a hot shower, walking, listening to music, keeping a journal, eating something comforting, watching a familiar movie, asking for help, or simply changing what you’re doing when pain begins to take over. His Micro, Meso, and Macro framework gives readers a particularly useful way to think about these strategies, matching different responses to different levels of pain.

There’s a refreshing willingness throughout the book to value small victories. A few hours of sleep, a pleasant meal, an invitation accepted, a moment of distraction, or an activity adapted rather than abandoned can become meaningful achievements.

Full review: https://wp.me/p3cyvH-VOD by @thevoyagethroughthemaze

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4 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
12pm:

Lunchtime - thank goodness. Some R&R for our troubles.

We do still need to eat even if we may not be able to stomach too much. Need to keep it light to reduce the possibility of expulsion. A violent act to be avoided whenever possible.

Dang, that Einstein. Time is speeding up just when we would like it to slow down.

Always need to get back to work on time to avoid any attention - fly under the radar, to continue to assist maintain our special secret!

It is so easy to experience grief over the loss of the simple life we used to live… at a time we never appreciated it. Now we can see/know the parts of life we do have, as against the ‘have nots’.

Regrets are pointless. We have, for the moment, ample income, shelter and nourishment to get by. And we simply cannot change the past.

Some of this break-time is expended walking - a low-impact exercise to help burn last night’s 2am ice-cream. Really needed it!

Naturally maintaining some degree of fitness is important for everyone.

Low-impact is the ‘go to’ for the chronic illness/pain sufferer. Not much equipment is required, which is good as medical situations drain not just our strength, but also our finances.

Time to get back… 🫣

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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4 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
10am:

The day progresses.

What! Ouch, a flare up. Not the worst one we have ever had but how do we function… get through the day!

Hang on, time to refer to our prepped back up plan!

Here we are: as we are subject to all the normal (not a term I like) ills of mankind, we could just say we have a headache, a toothache, or an upset stomach.

Knowing what we have to deal with allows us to prepare for these eventualities.
Am always learning… and taking notes.

Ok, will go with the headache and head for the kitchen, make our hot cup of tea and rest for 30 minutes on the lounge to try to settle this down…

Okay, time goes by and the flare has calmed a little - from a 10 down to an 8. This is more manageable. Back to work!

Still feels like one of these ‘iceberg’ days with our superficial self smiling on the surface, and mostly getting our job done.
Whilst under the surface there is pain, stress, and a little brain fog.

Must admit we can put fear aside if we choose to do so. We get to know what to expect from life, prepare as best we can, and deal with these moments, minutes, hours, as they unfortunately arrive… hopefully not, as we say, forevermore.

Hoping Einstein can speed up the day for us… please.

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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6 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
8am:

Okay, family catered and breakfast done. Time to head off to work. What will the day bring?

Driving does not assist the pain level, in fact it adds to it with traffic conditions and some wonderful drivers, who seem incredulously eager to just get to the next red light, and then to work? Wow!

The mind is busy with the chronic pain but need to look to the day ahead. There is work to do and pain to hide. We usually still need to maintain our income, despite our illnesses. Bills do not stop when pain lands… unfortunately they actually grow with medical expenses.

There are certainly some good workplaces around however disclosure of our ills can jeopardise our employment. Simply cannot risk it. This also essentially prohibits friendships at work, as personal topics can slip out. A genuine pity as this means we usually have no advocates at work.

Will need to rely on our Inner Circle (a small, select number of people we can 110% trust) to lean upon if the day gets to us. They do however have their lives to live so will need to lean sparingly!

Time goes on… seemingly @ a lower speed. Where are you Einstein when we need you!

Just because we are working does not mean we are well. We need the clock to ‘step on it’.

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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7 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
6am:

This is the time when most people wake with their alarm going off after 7-9 hours of sleep.

We have been awake most of the night, dealing with crazy, chronic pain, and a host of other issues… too many to list.

Okay, whilst we remain tired and in pain, we have our day to address.

We use both hands/arms to try to gently raise our sore bones from our somewhat safe haven.

Must make the bed (a chair with blankets etc for me) straight away to provide the subconscious the notion that our sacred place will be awaiting our return this evening. This can leave us with a warm feeling… some measure of comfort to cushion the day to come… hopefully a good one.

Trying to do our morning routine, catering for family needs, cooking, and preparing to go to work.

The thought comes into our minds about how we could possibly get through the day. Hmmm, we will have the usual fight on our hands.

Okay, have to keep moving.

Must admit keeping busy does help provide a distraction from the pain and side-effects, and the day can go faster. What do you think about that Einstein 🧠

Hoping for an uneventful day 😊

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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8 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
4am:

Okay, awake again. No alarm needed. Am already amply alarmed!

What time is it? Alright, it is 4.15am.
A further 31 minutes of rolling around seeking a comfortable spot where the central nervous system could possibly take a break from torturing the physique… mainly unsuccessfully. Oh well, perhaps tomorrow 😊

Self-alert: not much sleep/rest gained, so enact defensive walking/driving actions to avoid injury today.

Almost time to get the day moving… but not quite yet.

Not going to get any more sleep, so conduct some research to discover if there is anything new. Discovered a joint project with universities in Japan and Scotland finding different pain pathways for chronic pain, as against standard pains. They have named it SNG. Very early days but will track.

Now for an update on the general news of the day, as it is good to keep up to date with what is happening in the world. A handy distraction, which generates talking points other than our loony tunes chronic illness/pain.

We doze off for a bit.

** Please feel free to share your experiences

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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9 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
2am:

Is it morning time? No, just 2.23am.
A further 22 minutes of sleep gained (sort of) and we are up again.

The nighttime situation can certainly leave us feeling isolated. Must admit some time alone is actually welcome, as it leaves us free from any judgement. We do like to be helpful to others however at this time, if sleep is going to elude us, it is okay to do as we wish.

We are free to drape ourselves over a comfy chair with a super soft blanket,!some popcorn and ice-cream, and watch a movie of our choosing. A couple of hours away from my bed/chair. Hoping to be more tired when the film is finished.

It gets to 3.46am and we are feeling like we might be ready to get some more rest. The second half of the movie can always wait. Back to our chair we go, save a flare up 😊

** Please feel free to share your experiences 🤪

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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10 days ago

A Day in the life of a Chronic Illness/Pain sufferer:
12am/midnight:

It is midnight and we are awake.

How did we get here?
Oh yes, we picked up an illness, out of nowhere, and expected our doctor to do their job, their only job - make us well again. Unfortunately for us, they were unsuccessful… as was every other doctor we visited… and paid a fee each time for no result.

The pain is bad. We need to get up in the morning as we have responsibilities.

The pain is one thing, however the lack of sleep is difficult to bear!

Our day and night research keeps us busy but we really need some sleep.

We know doom-scrolling is a bad habit but conducting ongoing research to seek the remedy is in fact necessary, as it seems to be out of our doctor’s reach.

We find there are some studies, theories etc in the pipeline but still in their infancy.

They provide some comfort that a cure may be on its way. Okay… we doze off.

Huh, what time is it? 12 minutes later. Dang. Time to turn over and seek at least some slumber 😊

** Please feel free to share your experiences 🤪

http://www.chronicpain-book.com/

#thevoyagethroughthemaze
#chronicpain
#chronicillness by @thevoyagethroughthemaze

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11 days ago