How to Manage Fatigue

Am I fatigued, or just exhausted?

Fatigue1All of us BigD-ers feel weary at times. I’m often most tired just before I dialyse. Some days I arrive at the unit, dragging one foot after the other, dead tired. Putting my needles in can be as marathon effort. And once I’m on, I sit back, suck a couple of ice cubes, close my eyes and I’m in dozy land.

But half an hour later, I wake, bright and rested.

Thinking about it, most times I’m physically tired from my physical activity throughout the morning – my early morning walk, house stuff, running around, computer work. By the time I get to dialysis, I’m exhausted and ready for a long sit-down. And the sit-down solves the problem.

Exhausted manOn the other hand, fatigue is a lingering tiredness that is constant and limiting. With fatigue, you have unexplained, persistent, and relapsing tiredness, that is not relieved by naps or long periods of rest. So how can we manage fatigue?

Guest post: How to Manage Fatigue

This pithy and practical guest post is from Constance Peng, Provisional Psychologist / PhD student at the University of NSW in Sydney, Australia. It has some great advice and ideas to help us BigD-ers put a little more energy into our day.

At least 60% of dialysis patients say they often feel fatigued

Fatigue makes it difficult to participate in enjoyable and meaningful activities, can lead to depressed moods and overall poorer quality of life. If you are one of the 60 per cent, and your doctor has not identified any medical reasons for your fatigue (e.g. anaemia, hyperparathyroidism), then it is worth thinking about making some lifestyle changes.

Studies have shown that dialysis patients who have poor sleep and are physically inactive tend to experience more fatigue.

Some tips to help you improve the quality of your sleep and increase your physical activity

Go to bed and wake up at the same time every day (even on weekends). This will train your body to know when it should be asleep.

Limit your daytime naps to 30 minutes and have them before 3pm, unless your doctor advises you to nap more often. Try not to nap during your dialysis treatment. However, if you do, remember that napping excessively during the day makes you more awake at night.

Sleep only when you are sleepy. If you cannot fall asleep within 20 minutes, get up out of bed and do something boring until you feel sleepy.

ActiveSchedule in daily exercise you can easily fit in between your dialysis treatments and other commitments. It can be as simple as 15 minutes of slow walking, stretching or gardening. Stick to this no matter how tired you feel.

Pump it higher!Practice pacing. If you try to do too much on days you feel good, then you will feel too tired the next day to do much. This is a called a “boom and bust cycle” and you will end up doing less over time. Instead, aim to gradually increase your physical activity over time. For example, you can increase the length of your daily walk by five minutes every fortnight. Stick to this plan no matter how tired or energetic you feel.

If you would like further information on how you can tackle fatigue by changing your behaviours and patterns of thinking, it may be worth speaking to a Clinical Psychologist, who can explore the underlying causes of your fatigue and use effective techniques to help you get more out of life!

The BeanThis article first appeared in The Bean, the newsletter of the Concord Hospital Renal Unit, Concord, NSW.  Thanks, Constance for sharing it with us!

If you would like read more of The Bean, or sign up, click here.

Purple House – life-saving, community-saving, inspirational or all three?

I fact it’s so much more! I wrote about this amazing group of people, led by the fantastic Sarah Brown in August 2017, and she and the House have gone from strength to strength.

But don’t just take my word for it. This astonishing interview on the ABC’s Conversations is just a glimpse of how she has changed the world not just for people on dialysis and their communities, but for all of us.

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Bringing life-saving dialysis to the bush with Sarah Kanowski. Sarah Brown always wanted to be a remote area nurse. Then she began a medical revolution 51mins 25secs, Wed 3 Oct 2018

 

Just a reminder: Western Desert Dialysis reaches 18 communities

18 Communities Strategic Plan

Part of Purple House’s 18 Communities Strategic Plan

 

Purple House Alice Springs

Sarah Brown in front of the purple walls of Western Desert Dialysis in Alice Springs

On dialysis at the Purple House

On dialysis at the Purple House

 

A day out triggers some not so tasty memories

IMG_7334It has been a cold, wet and blustery day here today, with wind and hail coming directly from Antarctica. Just the day to go down to the bay, drink coffee, and check out how the waves and ships handle the weather. We decided on St Kilda pier kiosk, a delightful little café at the end of an about a kilometre of pier jutting out St Kilda Pier cafeinto the bay.

The walk there was like a gym workout, struggling against the blasting wind, hardly able to keep our feet. But we finally arrived and despite our many fellow travellers heading in the same direction, we found terrific seats at a window facing the ships anchored in the bay.

IMG_3178We ordered coffee: Julie a skim milk, decaf latte and (despite me only ever ordering small coffees) I ordered a large flat white (mainly to help me recover my breath and body warmth). And a lamington to share.

We had a lovely time.

IMG_3180When I finished my lamington (I’m not supposed to eat too much chocolate, so I always leave a few crumbs as a sop to my conscience) the sight of the leftovers on my plate triggered a long-repressed memory.

About ten years ago, Keely, one of Julie’s nephews, came to live with us. He had grown up with his mother in Queensland and decided he would move to Melbourne to find a job and maybe continue his studies.

Like every 18-year-old (then and now) he lived on the computer – our computer. One time, after quietly waiting for him to finish whatever he was working on, he logged out and left. I jumped into the still-warm seat and called up my current work. I had been eating a lamington at the time, so I put it (on a plate) next to the keyboard. As you do, I slowly ate the lamington as I worked. When it was all gone, I noticed coconut crumbs on the keyboard, so I started picking them up and eating them. Finally, I picked up quite a large piece and started chewing. It was hard and sharp. It took it out and looked at it. It wasn’t coconut, it was a chewed off fingernail. Keely’s fingernail. I spat and spluttered any trace of it into a tissue and told Julie. For some reason all she could do was laugh.

Which reminds me of another Keely-activated adventure. I was sitting at the kitchen table, about to eat a biscuit and drink some afternoon tea. As usual, I forgot to get my phosphate binders from the kitchen shelf. On the way there I noticed one sitting conveniently on the bench next to the table. So I picked it up, popped it in my mouth and had my afternoon tea.

what-causing-persistent-cat-cough-501064295I thought nothing more about it until Keely came home that night. In front of everyone, he said to me, Hey, did you see the white pill on the bench? Yes… I said, with the start of a bad feeling. Oh good! said he: I put it there. Mitzy (our cat) was trying to swallow it and kept sicking it up, so it I thought I’d put it out of reach. What! said I. What’s the problem says he. I ***ing ate it, that’s what!

Again, no sympathy from the rest of the family, just laughter.

I waited a week or so to make sure I hadn’t got feline enteritis or something before I started to see the funny side.

Ah, happy memories on a cold and wintry day.

A weekend away looking at big art

Tuesday 24 April’s Age newspaper had a story about some new silo art, created just in time for Australia’s Anzac Day on the 25th. It showed two medics, one from the past (WW1 nurse) the other from pretty-well right now (medic working in Afghanistan). They were enormous and looked fabulous.

Julie and I had a free weekend coming up after my early (6:30) dialysis, so we decided we’d go and see them in the flesh (so to speak).

Silo art is relatively new. In Australia, it started in Western Australia in 2015, with the Avon silos in the WA Wheatbelt, a gigantic area north and east of Perth.

Phlegm, CBH Avon grain silos.

Avon Silos

For the uninitiated, the silos I’m talking about are mostly concrete and were built 60-100 years ago to collect grain from the surrounding wheat fields and to load it onto trains that take it to cities or ships for consumption or export. Changes in agriculture, combined with the closure of railway lines, has left hundreds of grain silos in regional Australia abandoned.

These silos have been reused for various community activities, like film projection events, using the concrete silo walls as a screen; cellular or telecommunications towers, or for storage by private companies and farmers.

But by far the most delightful use is for silo art. Since 2015 silos in most states have been painted with a huge variety of artwork, from endangered native animals to real people who live and work in the area.

A quick search on the net shows that Silo Art Tours are becoming very popular, with maps and commentary for most districts. But we wanted to see the latest addition to the collection, not yet on any tour guide, at Devenish, pop. 300, about three hours from Melbourne (and 20 minutes from Benalla).

Art Bonus! When we checked the Benalla website, we discovered that Benalla is a pretty arty city in its own right. Every year since 2015, they hold the Wall to Wall Street Art Festival, where some of the country’s and the world’s best street artists paint the walls of the town and turn it into the street art capital of regional Australia.

Silo art AND street in the same weekend, on one tank of fuel. Sometimes you just get lucky…

So, Saturday morning about 10am, Julie picked me up from dialysis, bright, and perky and full of newly cleaned blood, and off we went. Straight up the Hume Freeway and about 2.5 hrs later we arrived in Benalla and checked in to our motel.

First stop the local bakery for coffee and cake. Excellent. Next, we start the art walk. Fantastic! Here are just a few we found on our rambles.

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World map cow

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Dinner at the local pub and a good night’s sleep. Breakfast at a very nice little café; checkout and we head north to Devenish. But wait, there is also silo art on the way, at Goorambat, a few km south of Devenish.

We arrive at Goorambat and the silos, nestled by the railway, dominate the small town. Two artworks, both endangered species: a river redgum and the barking owl. Very impressive. While we’re looking, a grey nomad from a caravan pulls up. We get to talking. There is more silo art just north of Devenish, at Tungamah. Worth a look while we’re here.

 

1-IMG_E68021-IMG_E6801Now to Devenish, just a few km up the road. Again, the enormous bulk of the silos are visible from quite a distance. At last, we arrive, joining quite a few others. One look at the silos and we realise that the photos we’ve seen don’t do them justice. Rising 20 metres (65 ft) skywards they are huge and beautiful. (And judging from the way the pub is being frequented, they have done wonders for the local economy.)

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The artist, the appropriately named Cam Scale, comes from Melbourne. It took him 11 days to complete both paintings. Amazing.

After coffee and cake at the pub (they have only recently learned how to make it), we set off for Tungamah, 10 km further north.

This time it takes a little searching, but we find it eventually. It’s birds: a huge kookaburra and brolgas dancing in a wheat field. Great to see, but for us, the nurse and medic take the cake.

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By 1pm, we’ve seen all the silo art there is to see around here. Gratified and delighted we turn south and head for home. But this won’t be our last silo art tour!

ps: If you want to see some more beautiful silo art, check out the Australia Post silo art stamp set, due out on 21 May 2018:

Australia Post silos

In memory of Merle, Rest in Peace

Not rehab, reconditioning

The last six months of hospital stays, bleeds, transfusions, infections and heart stuff has left me pretty scrawny and deconditioned – my enormous abs, legs and biceps are but dim shadows of their former selves.

But over the last few weeks, I have turned the corner.

My infection is under control (with horse-size doses of Clindamycin, a yucky-tasting but effective antibiotic. My bleeding and other mysterious blood disappearances have at last come to an end (mostly because I stopped taking the blood thinner Ticagrelor, which was poison to me). My AF is under control, with fairly large doses of Amiodarone. The almost-blockage in my right coronary artery won’t be stented or otherwise operated on (to remove the calcium lump I have patiently built up over years on dialysis). I am taking aspirin daily as a moderately effective blood thinner and maybe that will be enough. So far this has proved to be the case.

So there’s no need to be skinny anymore. At last, I can walk further than around the bed. This morning Julie and I walked about 3km (1.8m) around our block. It was no speed record, but I have been walking regularly now and as long as I don’t try to run up hills, I feel pretty pleased with myself.

legsBut Julie, being Julie, doesn’t think that this is enough, so I went to my local doctor, got a referral to a rehabilitation centre and made an appointment.

Julie and I went along a couple of days ago. The first step is to be assessed by a doctor, who then nominates a plan for reconditioning (yes that’s what its called) over the next 10 weeks. I imagined the assessment would take 5-10 minutes and I’d be outta there. But no, it took 1.5 hours and was the most thorough (and humbling) I’ve had.

It began in a friendly way, with the usual questions confirming who I was, where I lived, why I was there, my medical history of how my body came to be in such a sorry state. Then a little family history: illnesses and causes of death in the family, etc. All to be expected.

What was not expected was a detailed physical and mental assessment. First the physical: sit, stand without help, checking the level of movement of arms and legs, timing me to get out of the chair, go to the wall and touch it, then return and sit in the chair. Of course, I moved faster than I have for weeks to make a good show of it, but all the doctor said was: 8 seconds, that’s ok. I thought it was pretty slick. But there was more to come.

First, he gave me a pencil and a printed sheet: join the dots in the right order, redraw that cube and others. OK. Now I’m going to say 5 words. You repeat them after me. I’ll say them again and you repeat them again.  Then a little later, I’ll ask you to repeat the words. They were face, velvet, church, daisy, red.

1-IQ testHe then asked me to count backwards from 100 by 7s. Now, this is not something I do on a regular basis, but off I went subtracting and concentrating until I got to 65, when (thankfully) he stopped me.  It was a slow and stumbling performance. (I later asked my 40-year old son to do it, and he raced through the numbers without thinking – his kids do these backward counts all the time, instead of the old times tables we learned at school, and he picked it up from testing them. Not me.

Still recovering from putting in such a poor performance, he asked me to list as many words beginning with f that were not proper nouns (beginning with a capital F). I began like a racehorse, listing the fa’s (fat far fantasy, etc – even fart), then fe’s (feeble fear fellow, etc), the fi’s (fin finance fickle, etc,) then fo’s (fox fondle forest, etc). then fu’s (future fun full, etc. I left a couple of the more disreputable f-words out. I realised later that I left a lot of fr words, like frank frenzied friar, and even good old from.

But of course, that’s all very well when you are in the car leaving the car park. (The French have an expression for it: esprit d’escalier – spirit of stairs, or wit of the staircase: witty responses thought of only too late, on the way home.  Just like me.

Sitting in the back of my mind all through these tests was: do I remember the five words?  When will he ask, because I need a moment to think. Of course, the tests went relentlessly on for another 10 minutes. Then he asked: what are the five words?

1-memorygameMy mind immediately provided the first two: face and velvet, then nothing. He looked at me, I looked at him, then I looked at Julie (who smiled and looked away – thanks Julie!). Then he said I’ll give you two hints and if you still can’t remember, I’ll give you a multiple choice. I got two more with hints and the last with multiple choice. What I also got was a strong dose of humility.

But there was more to come.

In his very next sentence, he said he not only specialised in rehab/reconditioning, but also in Alzheimer’s disease. My immediate reaction was: SO? It was unspoken and followed (also silently) by When does this session end?? Let me out! I came for rehab, not embarrassment.

Fortunately, it ended shortly after. We were taken to the physiotherapy area and I was booked in the start next week.

I must admit I was a little peeved when we left (i’m a sensitive kind of guy), but Julie thought it was hilarious. After a while (and after testing a few friends) I have mellowed. Either we are all lining up for dementia or those results, under those conditions, for people who need “reconditioning”, are pretty normal.

Anyway, that’s what I reckon.

Ask me again in 10 weeks.

Road trip to Adelaide!

Julie has been commuting to her work in Adelaide a few days a week for more than a year now. So, for a change of pace, we decided to start our New Year by driving there together for a working holiday – she would work while I’d be on holiday!

There’s nothing as romantic as a road trip, where we could check out the delights of remote Victorian and South Australian country along the way. When you fly, you leave home, sit in a tube for an hour or so and you are there. On a road trip, the holiday starts as you pull out of your driveway. (more…)

Living well on dialysis? Absolutely!

BigDandMe is all about living well on dialysis.

Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.

It is always great to hear of other BigD-ers with this living-life-to-the-full attitude.

 

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Wayne Cooper LSBM at DELA

Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home. (more…)

Yet another !*?*?*! adventure?

This time the adventure began when I went to the toilet. When I looked at the result I saw a black mass surrounded by red wine that I don’t remember drinking. My heart fell: not good.  I thought, will I tell Julie and have to go back to that damned ED? Or will I just stay quiet and hope it is a one-off?

I flushed and began to walk away when I needed to go again.

Same result, with more red wine. Actually, all red wine.  Er Julie, have a look at this. She looked at me with just a touch of anxiety, looked into the bowl and said: Pack your hospital stuff, we’re going to Emergency, no arguments.

Blood transfusion Number 1

Blood transfusion Number 1

I hate it when I’m, right. (more…)

Another September medical adventure on dialysis

With my heartbeat restored to normal rhythm by those wonderful people at the Austin Emergency Department, life was sweet again.

Then on the evening of my third day back on BigD, about an hour into the run: crippling stomach pains. What the hell is this? Over the last few weeks, I’d had a niggling stomach ache, which I had attributed to a series of hotter than usual curries from my lunch shop. As you do.

red-curry-riceI’ve been losing weight lately, so I’ve taken to having a hot meal at lunchtime to try and beef up a little. I go to the same place most days, called ThreeAteThreee (‘cos it’s at 383 Camberwell Road, of course). It’s owned by a Chinese couple called Rick and Too-Shy-to-Say. Rick is a great cook. He makes a main meal every day: one day chicken, the next day beef. Usually, it is a curry (more…)

A call from home

1-home_is_where_the_heartI’m back home.  Well and truly.  And what a wonderful trip it was.  We spent nine days in Portugal (Lisbon and Cascais), two in Madrid and four in London, a total of 15 days.

My original plan for this post was to write a little about the trip and a lot about the dialysis experience: how it went, how I managed, what I liked, what I didn’t, what I would do differently, what may be useful when you plan your trip.  But life, in the form of a call from home, interrupted this plan.  It’s my internal top story, and it’s pushed dialysis aside. (more…)