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Alerts

This is a page of links to several diverse alerts which have been saved as PDFs, on topics ranging from anaesthetics, cardiac medications, and a medical alert card.

Anaesthetics and polio.

Anesthesia Concerns for the Polio Survivor.

Beta-blockers and Carnitine – post polio.

Bruno on Cholesterol.

Deadly Pain medications.

Dental and anaesthetic cautions – Bruno.

Drug and Exercise Cautions.

Ezetrol & Statin Warning.

Medical Alert Card.

Medications post polio – Dr Susan Perlman.

Polio Survivors as patients.

Sleep

If you are old enough to remember . . . I mean before TV (Channel 7 started in 1959 in WA) Friday night at the pictures was Kids Night and Saturday night was Family Night. We didn’t go every week, it depended on what was showing but I always thought it was a waste of time my sister going (she is only a year younger than me) because she was often asleep while the trailers were on – before the main film had even started. Whereas I was always wide awake till the end of the film 10.30 – 11pm! Dad carried her out to the car, fast asleep. I had to walk to the car because I was still awake. My sister still goes to bed and gets up with the birds, and I am still a night-owl.

Everyone has their own night-time sleeping patterns.

They are programmed into us and we shouldn’t change them. Interestingly, a study published in Diabetes Care in 2015, reported on a study of over 64,000 Nurses looking at the relevance of natural early-risers (larks) or late-to-bed (night-owls) people, shift-work and the development of diabetes and cancers, including breast cancer.

What they found was that we should have jobs where the work time fits with our natural sleep-time patterns. They found an equally poor long-term health effect for “larks” having to work late shifts, and for “night-owls” to have to get up for a 7am start. It was found that 35% were “larks”, 54% middle-of-the-road, and 11% were “night-owls”.

The Results of the Study:

“Imposing both partial sleep deprivation and circadian misalignment on participants resulted in decreased metabolic rates, increased plasma glucose levels, decreased insulin sensitivity; and work schedules that constrained individual natural sleep timing were associated with obesity. In conclusion, the results suggest that if work times interfere with individual natural circadian sleep timing, shift and day workers may be at an increased risk for type 2 diabetes.”

Diabetes Care. 2015 Sep; 38(9): 1707–1713. 

So when we go to bed is important and very individual. Our health suffers if we try to go against our natural pre- determined inclinations. Sleeping problems amongst WA polio survivors escalated from 36% in 1989 to 80% by 2004. This has reduced to 73% in 2014 since I have been working on ways for us to improve our sleep.

The problem of getting a good night’s sleep has increased in the normal population of late as well and the results of our survey of polio survivors in the other Australian states show levels of poor sleep ranging from 84% in SA and Vic to 88% in NSW, Qld and Tas. So this is a real problem and there are more dire health consequences than just being tired and grumpy.

People get stressed just because they think they are not getting enough sleep. My mother used to worry so much that she wouldn’t be able to get back to sleep if she was woken up – so I had a 12 midnight curfew when I lived at home in my twenties, before I was married!

I am one of the lucky ones! I am usually asleep as soon as my head hits the pillow and can go straight back to sleep if I wake during the night. In fact I feel cheated if I don’t wake a few times during the night – just to see how long the night is! – and these wakes are usually at the end of the REM times, as in the chart below. But I can’t get to sleep if I go to bed too early – and my natural pattern is to sleep in later. So I get a lot of my work done late at night.

My husband used to be envious as it took him half an hour to get to sleep. One of my sons is like me and the other like him. The same with two of my grandchildren.

So why are we all so different?

When I was a kid we had a definite sleep-time routine. After tea we read or played cards, (or watched TV when it came in) then had a hot bath, supper (hot milk cocoa, crackers and cheese or home-made cake) off to bed and out like a light.

Having a hot bath stimulates the para-sympathetic nervous system which actives while we are asleep so being warm helps us get to sleep. The sympathetic nervous system is active when we are awake and is stimulated by cold. So a cold shower wakes us up, & being cold or having a cold bed will keep us awake.

There are definite stages to the sleep cycle and if we don’t sleep enough hours, we don’t get the benefit we should. Stage 1 is a light sleep from which we are easily woken. We begin to lose muscle tone, causing twitches and jerks Stage 2 is marked by a loss of nearly all muscle tone. We spend around half of all your sleep in Stage 2; a light dreamless sleep. Stage 3 and 4 is known as slow-wave, a dreamless stage of sleep; it is actually the most likely time for sleepwalking to occur. REM Sleep marks the onset of dreaming. REM sleep deprivation impairs our ability to learn complex tasks and form long-term memories.

Solutions to common sleep problems

Not getting enough good quality sleep (7-8 hours) means that we cut short these sleep cycles and they do have a purpose. If we imagine our bodies like the supermarket at night, shelves are restocked, rubbish cleaned up and thrown out and tills tallied up and recorded. Everything is readied for the next day and our bodies do this while we sleep as well. Three of the most common complaints I get from people are:

1. I have trouble falling asleep at night.
The short answer to this one is- ZINC will usually fix this. In simple terms, zinc is low in our soil and most people are short on zinc. Taking extra Zinc turns off all the “racing” thoughts going round and round in the brain. I liken it to shutting down our “brain computer” and doing a “save”. We need zinc to commit short term memory from today’s happenings to long term memory, so we can remember important events later.
You may have heard of taking melatonin and GABA or even 5HTP to help us sleep. We don’t have to buy these. Our bodies normally make them as long as we have enough of the ingredients. Zinc is the major one we are missing so we should start there.
Melatonin results from the breakdown of an essential amino acid called tryptophan, which is found in most protein-based foods but is particularly plentiful in chocolate, oats, dried dates, dairy foods, red meat, eggs, fish, poultry, sesame seeds, almonds, sunflower and pumpkin seeds, bananas, and peanuts. We need zinc, B3, B6, C and magnesium to convert these foods to tryptophan then to 5HTP then to serotonin, and then into melatonin.
So this is where the hot cocoa, and cheese and crackers for supper, came in when we were young. We also need a dark room for the body to make melatonin, so pull the curtains and switch off or hide any night lights, including clock radios. Uncover if you need to get up for the loo.
GABA? – to make it we need glutamine and taurine (best taken in the morning) and again B6 and then zinc at night.

Zinc chelate 220mg x 4 taken 30 mins before bed. Take magnesium before bed too. Have a hot bath/shower before bed

Falling asleep

2. I wake after a few hours and can’t get back to sleep.
Again, try 2 more zinc as GABA is needed to get back to sleep. Also magnesium, potassium (soup or veggie water), glycine (gelatine – jelly or jelly lollies) or chocolate. Avoid artificial sweeteners, coffee, MSG or taking too much glutamine (and don’t take it at night as glutamine is for mental alertness during the day).
Other things that keep us awake are restless legs or cramps (need more magnesium), pain (often need magnesium for muscle aches – try cutting out cheese and yoghurt; take manganese for painful hip or shoulder or stiffness; gelatine and borax for arthritic pain). Frequent trips to the loo and incontinence may respond to taking cranberry tablets – not juice, it is too sweet. If we eat sweet foods before bed this can cause a rise in blood sugar, followed by a sharp dip a few hours later which wakes us. Getting up to go to the loo will raise blood sugar, which may then allow you to go back to sleep. A better idea is a bit of protein for supper – ie crackers with cheese, egg or fish to even out blood sugar. Nuts and seeds or carrot/celery sticks act as resistant starch so help maintain an even blood sugar too.

You need more GABA – so take glutamine and taurine + B6 in the morning and zinc chelate x 4 before bed. Have some protein for supper and eat some chocolate. Jelly helps too. Fix pain problems.

Waking up

3. I wake up every morning feeling tired.
You may not be getting enough dream time. Dreams are one of the ways your brain consolidates memories. During dream time, your brain can reorganize and review the day’s events. It also connects new experiences to older ones. That’s why getting enough REM sleep can enhance learning as well as memory.
The second thing that happens during REM sleep is that your body’s muscles completely relax. This state of relaxation allows you to feel energized and rejuvenated the next morning.
As you can see, REM sleep is crucial to helping you feel sharp, healthy, and well-rested during the day. But if you are getting plenty of shuteye and still waking up tired, it may be because you’re not getting enough REM sleep. Lack of health-restoring REM sleep leaves you drowsy and fatigued the next day. It makes it hard to focus, remember names, or recall where you put your car keys. Even worse, it can do lasting damage to your memory. Taking Vitamin B3 in the morning can help you make more 5HTP which helps your dream time. L-theanine is a substance in green tea that helps as well and sea salt has 84 minerals you need.

Check for sleep apnoea. Do you snore?

Morning tiredness

Salt is vital for sleep regulation
• Before getting into bed drink a full glass of water then put a few grains of good quality sea salt on your tongueas you lay down and let it stay there.
• You will fall into a natural deep sleep!
• (Don’t take salt without the glass of water – it can make your nose bleed.)

What Your Sleeping Position Says About You and Your Health
by Chief Scientific Advisor, Dr. Victor Marchione, M.D. 14 February 2014

Book review: Sexual Chemistry

Their sins shall be visited on their children and upon their children’s children

Jeremiah 15:4

Ever wondered about this quotation from the bible and thought it a bit harsh?
Dr Ellen Grant in her book “Sexual Chemistry” published by Mandarin paperbacks, London 1994, brings this prophecy to life, even to death.
Dr Grant, a Scottish obstetrician working with the research body of the Family Planning Assoc. in London over the last 30 odd years has been involved in the late effects’ of fiddling with our hormones, particularly through the increasing prevalence of the Pill and HRT. None of us are really safe as hormones, sexual, growth, antibiotics etc are fed to the animals we eat and genetic engineering is further complicating the genetic structure of our foods. eg the new McGregor tomato has a fish gene added which could make the tomato dangerous to people allergic to fish.
Also our fish supplies have increasing sources of hormones from the effluent in the sea coming from the toilets of women on the Pill and HRT who excrete the hormones in their urine.

What have we done to ourselves and the human race? A good question. Hormones, beside controlling sexual development and function, also help to control growth and muscle building, regulate the digestive system, blood sugar levels, blood pressure and fluid balance. Increased hormones in the blood stream create extra demand for nutrient chemicals, particularly zinc (Zn) and magnesium. A shortage of essential trace elements, especially Zn can block hormone production. Our bodies make more essential hormones than just sex hormones so we can really create an imbalance.
Zn is needed in our diet every day. It is not stored in the the body. Zn deficiency is becoming the commonest of all essential nutritional deficiencies. This results in poor growth, dyslexia, learning problems, hyperactivity and food allergies just for a start. It has been found that mothers and fathers of dyslexic children are also low on Zn.
Zn is particularly important for sperm production.
Sex hormones also lower levels of body magnesium.
Ellen Grant states,
“Magnesium deficiency is a main cause of backache, neck ache and joint problems which affect both athletes and the sedentary. Also with zinc deficiency, it is a major cause of osteoporosis.”

MAGNESIUM (Mg) is needed for energy transfer. Lack of adequate Mg leads to stockpiling of sodium which causes swelling in the tissues as water is retained, resulting in loss of calcium and potassium the end result being weakness and fatigue. Lowered calcium makes bones soft. Lowered Mg makes them thin. An excess of calcium interferes with the absorption of Zn, Mg and Iron. Mg increases bone density. Other essentials for bone include Zn, Manganese, Potassium and Vitamin D.
Mg is Nature’s calmer. Mg deficiency causes anxiety, insomnia and heart irregularities. In females Mg is necessary for implantation of the fertilised ovum. Mg helps in the circulation of blood to the limbs and prevents cramps. Flushing or cold sweats are signs of vascular overactivity, indicating a fall in Zn and Mg levels.
A shortage of essential vitamins and minerals block the body’s ability to produce important enzymes. Enzymes speed and control the chemical reactions within the body, which maintain all bodily functions.

The DNA or genetic masterplan of each individual cell can be changed by excessive sexual hormone stimulation. These changes can be repaired provided there is sufficient Zn available. If this repair does not take place, permanent mutations can occur resulting in cell abnormalities causing congenital abnormalities in the developing fetus or cancer from loss of control of the division process.
During pregnancy the increased progesterone levels lower immunity to sustain pregnancy, so the mother is more susceptible to infections including HIV, thrush and cancer as the body is in a state of proliferant growth. Increased Zn and Mg supplies are required to sustain pregnancy. Breast milk is high in Zn for the baby’s immune system and the mother needs extra Zn for estrogen production to produce antibodies for herself and her baby’s milk.
Zn for estrogen is necessary also to prevent post natal depression.
Undescended testes in male babies indicate the mother is Zn deficient.

Dr Ellen Grant trained in Dundee, Scotland in the 1950’s. In 1959 as an obstetrician and endocrinologist she began working in the fertility clinic at the University College Hospital, London. In 1961 she joined the new oral contraception trials with the Family Planning Assoc Research body. Her job was to see women at 6 monthly intervals, recording all data and including taking pap smears which she examined in the pathology department.
What she observed over the following decades led her to believe the changes in women’s chemical status were having dramatic effects on their lives and progeny. Young girls put on the Pill for painful menses were appearing a decade or so later with cervical and breast cancers.
All manner of problems she traced back to chemical imbalances caused by excess hormones, treating women successfully by correcting their body chemistry. Pill users and their daughters were more likely to suffer endometriosis and uterine cancer. Fibroid formation was encouraged by excess estrogen. Ovarian cysts increased because of lack of Zn. Male children presented with testicular and prostate cancer in their twenties.
Dyslexia and learning problems from lack of Zn increased in post-Pill babies. The more active a brain is, the more Zn is used. The areas of the brain most affected by low Zn are short term memory, eye focus and lack of left or right domination. At puberty, post-Pill girls particularly suffered painful menses and mood changes.
Changes in chemical balance increase likelihood of migraines. Headaches are a warning of overactivity in the brain, a change in electrical discharges. The blood vessels in the brain dilate and contract excessively. The enzymes which control these need Zn, Mg and B vitamins. Often extra Mg will clear a headache within half an hour. Headaches which later become migraines are an indication of the development of arteriosclerosis. Increased hormones thicken the arterial linings. Clots break away causing thrombosis, heart attacks
and strokes. estrogen increases immunity and the immune response thus creates more allergic reactions and more headaches. Distended, painful veins and leg cramps are also prevalent in women on the Pill, usually solved with extra Mg.
Brain and eye complications increased in Pill users due to thrombosis. Optic neuritis revealed demyelinating of nerves. Before the Pill, MS was equal in both sexes. Now post-Pill women have 4 times more MS.
Dr Grant found the Pill interfered with the protein metabolism pathways, turning women off eating meat and making them more likely to become vegetarian. If you are tired it is easier to digest and absorb a carbohydrate meal. She saw many patients in their 20’s and 30’s eating the same diet of cereal for breakfast, cheese sandwich for lunch and vegetable pasta for tea. Fish and chicken may be once or twice a week. Husbands were delighted
when she would prescribe a high protein diet.
A vegetarian diet is low in Zn. Legumes and grains interfere with Zn absorption. Coffee and tea lower Zn and iron levels as do alcohol and food colourings. Cereals remove Zn from the body.
Lack of Zn inhibits protein build-up and stops growth. If Zn is low, protein cannot be absorbed and used from the diet. Meat allows absorption of both Zn and iron from the diet at the same time, however Zn is required for this to take place: a vicious circle. If supplemental Zn and iron are taken at the same time neither will be absorbed.
People who are short in stature are usually low in Zn. Downs Syndrome children have low Zn and poor thyroid production. When given Zn their thyroid becomes normal. Thyroid hormones help to maintain Zn concentrations.
Zn is needed for hair protein. Lack of hair protein stops hair growing. Toxic metals are excreted in the hair, so if it stops growing there is an increase in body toxicity.

The Pill interferes with carbohydrate metabolism by raising blood glucose levels. This leads to increased insulin production, stressing the pancreas, leading to exhaustion of the pancreas and adrenals. Diabetes results. Hormone taking affects pancreatic enzymes and insulin production.
When there is insufficient Zn there is a lowering of digestive enzymes causing malnutrition. Even when Zn supplies return to normal, it takes 2 years for the pancreas to recover.
Oestrogen increases blood fats and progesterone delays gall bladder emptying, the result is gallstones. After menopause small amounts of oestrogen are made by the adrenals and fatty tissue so fatter people are naturally better off having less loss of estrogen post menopause.
So in trying to control our own reproductivity has mankind finally wrought the potential for its own destruction? Will we ever learn not to disrupt this wonderful machine of nature’s designing? What legacy indeed are we leaving to our children’s children of the future.

Ready for Summer?

With summer fast approaching polios are usually rejoicing: Relief for cold feet and less painful joints! However as we age we may not tolerate the extreme heat of summer as well as we used to do either.

Some Simple Tips

  • Heat drains energy weakness, loss of reserve, palpitations. Supplement potassium ie Slow K, vegie water, vegie peel – crisp with sea salt in oven.
  • Faintness, exhaustion: Loss of electrolytes – add some sea salt to drinking water to just below taste
  • FEET – Burning – Smelly – Swollen – Cracked: Vitamin B5, Zinc, Potassium, Vit B6, elevate feet, rub with coconut oil
  • SKIN – Heat rash or chaffing if skin rubs, dry, scaley patches: Dust with “corn” cornflour  on rash or in skin creases. Coconut oil. paint with iodine.
  • Cramps, spasm: Magnesium twice daily. Drink more water -sea salt
  • Can’t sleep – too hot: Cool bath/shower before bed, use fan, tepid sponge
  • Food poisoning (NB food should keep refrigerated for 5 days): Reheat foods by boiling 5- 10 mins to kill germs. Take colloidal silver 60ml.
  • New shoes that rub and cause blisters: Soap hands and rub over feet frequently to lubricate

ACID ALKALINE BALANCE
It has come to our attention that eye shape changes quite quickly in response to acidity status. I used to wonder why some times I had what I called slitty “piggy” eyes and sometimes lovely big “cow” eyes. Normal eyes are in between. Piggy Eyes are too acid. Cow Eyes are too alkaline. They can change from day to day and even as the day progresses. The 2 main factors that make us too acid are heat (incl hot weather), meat and protein foods or grains. The factors that make us alkaline are cold and fruit or vegetables. We can use this knowledge to help us re- balance our over-acidity or alkalinity.

Make your own “Fizzy” !!

 1⁄2 teaspoon of carb soda in 1⁄2 cup of fruit juice (preferably water or juice that has some citrus in it)

Stir until froths up to top of cup then drink

Take 1 – 4 times a day away from food according to eye shape ie Piggy or Cow eyes.

Take on rising, mid morning, mid afternoon, or before bed. Take at least an hour after meals.

Makes us more alkaline so body can work better.

Hayfever and allergies

Hayfever season can be a tedious time for those prone to allergies. But here are some simple ways of coping better.

Vitamin C is our natural anti-histamine and anti- inflammatory agent. If you look in biochemistry books you will see that the 2 main ingredients in cortisone production in the body are Vitamin C and Vitamin B5 (pantothenate). Try taking sufficient Vit C twice a day to bowel tolerance but if not sufficient try adding a few grams of B5 twice a day too. It is important to take the right Vit C for your blood group.
Vitamin D3 is equally important. Take 6 – 10 daily.

SymptomSolution
Sneezing. Runny nose. Post nasal drip.Vit C 2000mg – 10,000mg
Vit B5 2000mg – 4000mg
Vit D3 6000iu – 10,000iu
Stuffy noseVit C. Boil lemonade and sip hot as you can
Irritated, watery, itchy eyesVit B2 400mg daily
Itchy irritated earsFish Oil 2000mg –4000mg
Sinus problemsVitamin A (cod liver oil capsules 2 – 4 per day)
Persistant coughVit D3 6000iu – 10,000iu
Raw inflammed skin from tissues and heatRub with coconut oil
Dust with “corn” cornflour
Cold soresPaint with iodine, Vit E
Loss of voice, hoarsenessVit B1 4 x250mg. Drink more water

Parasites

The human body is literally crawling with hundreds of strains of viruses, yeasts and bacteria and other small foreign organisms. The digestive tract alone holds more than 1kg of bacteria. In the right balance, these organisms are necessary for proper digestion and nutrient absorption. We definitely do not want to be completely sterile. However, there are over 130 species of parasites which can cause up to 400 different diseases. Here is more information about what to look out for and how to manage them.

What is polio?

POLIOMYELITIS is an enterovirus (ie tummy wog) of the picornavirus family.
There are 3 strains of polio Types 1, 2 & 3 – and having polio does not protect us from the other 2 strains. NB polio can be caught from the nappy of a child who has been vaccinated with Sabin (a live weakened virus) for up to 4 months later – if you are not vaccinated. Salk (injection) wears off over time. It is advisable to now have Sabin (oral) booster. Australia now uses 2 initial Salk followed by 2 Sabin for babies, to lessen risk of vaccine-caused polio.

CATEGORIES of POLIO
1. Paralytic – spinal &/or bulbar (eg iron lung)
2. Paralytic – slight paralysis or weakness only 
3. Non-paralytic – ‘flu-like with muscle irritability 
4. Abortive – ‘flu like symptoms only
5. Sub-Clinical – no symptoms. 95% of people fit this category prior to vaccination.

Only 5% had a recognisable dose of polio (ie 1- 4) and only 2.5% were left with any residual weakness or paralysis. Anyone from categories 1- 4 may now be experiencing further physical deterioration. These people would have had some nerve and muscle damage due to polio even if it is not apparent to us. It may be picked up by a neurologist with EMG testing. In fact those walking around, with a busy life, are more likely to have problems than those sitting in wheelchairs. They are still using more muscles, probably at a faster rate because there are less left. Weakness is only apparent when nerve and muscle capacity is less than 40-50% of original total. However we all lose a small percentage annually as we age so with polio we can reach 40% earlier than others.

Polio people walk a tightrope whereas non-polios are on the footpath. We have no reserves to fall back on. They were lost to polio.

Polio people avoid doctors and hospitals. They had enough of them when they had polio. We need to be pretty desperate to front up to a doctor. We are likely to trivialise symptoms. We often live with constant pain and fatigue anyway. We accept these as “normal”. Our whole life since polio has been an attempt to fit back into the community – to just be “NORMAL” !!

Polio people often don’t see themselves as disabled.

MOST COMMON SYMPTOMS 
Undue fatigue
New muscle weakness
Pain 
– muscular and/or joint
Lack of endurability
Breathing 
difficulties
Sleeping problems – apnoea & disturbed sleep 
Swallowing difficulties
Reduced ability in daily activities

USEFUL TREATMENTS
1. Slow down – don’t exhaust
2. Exercise cautiously within capacity
3. Support nerves & muscles with supplements where indicated eg carnitine, magnesium, B6 
4. Use aids & equipment where appropriate sooner rather than later. eg caliper, wheelchair 5. Eat to help body not hinder eg red meat for carnitine, lose weight, blood group foods
6. Avoid medications that worsen polio eg beta blockers, cholesterol drugs, muscle relaxants 
7. Explore alternative options – eg massage, Feldenkrais, Bowen, magnets, chiropractors, yoga

USEFUL RESOURCES
1. Work in partnership with your GP
2. Get advice from your Polio Network
3. Use experienced Specialists
Orthotic Dept – RPH – SPC for calipers, splinting, corsets & braces, special shoes
Late Effects Clinic – RPH – SPC for exercise 
Sleep Disorder Clinic – SCGH for apnea 
Pulmonary Physiology – SCGH for breathing 
Neurologist – Dr R Goodheart – (polio trained) 
CAEP for aids at your local hospital OT Dept or Rehab Engineering & Pressure Clinic at RPH – SPC for wheelchairs & cushions 
Silver Chain for home help, showering etc 
Half price Wheelchair Taxis -Transport Dept 
Disabled Parking – apply ACROD

MEDICAL ALERT
Polio symptoms may be worsened by the following. They should be avoided or used with caution.
Beta-blockers – eg betaloc, inderal, tenormin 
Benzodiazapines – eg valium, serapax, ativan 
CNS depressants – eg mogadon, normison 
Muscle relaxants – scoline, atropine, buscopan 
Cholesterol reducing drugs – pravachol, zocor 
Local Anaesthetics – eg lignocaine, xylocaine includes eye drops & dental work caution General Anaesthetics – all types – monitor dose carefully. No need for premed or muscle relaxants
NB Polios may take twice as long to recover from surgery, accidents, anaesthetics, fractures, trauma

Swallowing problems occur in about 16% of post-polios, it can be intermittent, and it can be frightening, It is most common after type 1 polio: paralytic bulbar type. If you develop new symptoms, don’t hesitate to consult your doctor. Remember to chew slowly and well, without distractions like the TV or conversation. Take smaller mouthfuls, and reduce the size of your meals. You may need to eat more often to compensate.

Sleep apnoea can be related to swallowing difficulties, due to weakness of the upper airway muscles.

Fatigue

Have you ever felt like this?

This is a word picture of what it feels like to have to deal with the fatigue of post polio. This is what it is like for 71% of Australian polio survivors now, as they age with the Late Effects of Polio today.

This may help you to explain to family, friends, doctors etc just how bad this is.

I think I am just “lazy”. It is too much of an effort to get up, to walk around, to do the any work, to prepare meals. I make excuses to myself.

I can’t even think straight to “work out” what I have to do. But it has to be done. So I push myself to get on with it. I think I should be doing things, so I do. Then I am so exhausted that I am overcome with a mind-dampening exhaustion – brain fog that requires complete relaxation lying on a bed, not even thinking. After half an hour or so I start to feel some energy returning. I get up again because I can’t lie here all day. Must get on with the day’s work.

Everything is such an effort. It is like wading through water. It is an effort to put one foot in front of the other. I find the length of my stride has lessened and I have widened the base on which I walk – because I don’t feel steady on my feet and am likely to overbalance and fall over.

I find I am exaggerating lifting my feet – and put them down with a stamping effect, as I am not sure how high I need to lift them to clear the ground or how far down again to get to the floor.

I drive around looking for the closest parking spot to the shops. By the time I walk in and get a trolley, I’m wondering where I will find the energy to push it around the aisles, let alone get back out to the car. Sometimes I don’t even get out of the car. I start the engine and go home again as I didn’t have the energy to even get out of the car to go shopping. These days I only shop for essentials – like food!

Gone are the days when shopping is a pleasure and a day out with a friend is a treat!

I find I am driving with only one hand on the steering wheel. The other is resting in my lap.
It takes too much effort to have both hands on the steering wheel if I don’t have to.

When I sit in a chair, I tend to slump, and slide further and further down the chair. I know I am sitting round shouldered but I just can’t stay sitting up straight. I end up going to lie down on the bed – it is too much effort to even get up out of the chair to go to the bed – but I know I will recover more quickly if I do lie down.

I have problems hanging out the clothes as I can’t keep my arms above my head for too long. Just getting the washing basket out to the washing line wears me out. I have to go back inside and lie down on the bed for 15 minutes or so to get enough energy back to go outside again to try to hang some of it on the line. The same bringing it in again. I really need my family to do it for me.

If only they were still here to help me! It takes so long to do what used to be simple tasks.

What is wrong with me? I struggle to mow small sections of the lawn, or weed a garden bed, wash the car. I used to be able to do all this so easily!

I am so angry and frustrated that I can’t do what everyone else considers “normal” things, without it being a super-human effort. I hate having to ask my family to help me do what I used to be able to do. I feel they don’t value me anymore and resent me being here – having to help me.

They do not understand how difficult life has become for me. I hate being a burden on my family so much that I have considered ending my life to release them from the burden of my being here. My doctor can’t find anything wrong. He says it must be all in my head. He says I need antidepressants – but then I feel worse.

Is this all there is left? I feel like my life is over – it is all just too hard for me. Is this maybe what they call – “Post-polio fatigue”?

I don’t like to admit it. So often I knock back offers of help without even thinking – saying “No thanks. I am right!” or .“I can manage thanks!” even when I can’t. But maybe now I need to accept that I can actually make others feel good about themselves, by allowing them to help me.

But what can we do about it?