Uncategorized Archives • Chronic Alternatives

INCREASED DAYLIGHT – do the words fill you with horror or glee, right now?

The increased daylight of Springtime brings the season to us strongly and definitely. These are uncertain, unprecedented times we’re living in!
Keep safe, stay well, follow distancing guidelines and wash your hands, again. Seems to be a worthwhile suggestion for us all, right now.

With all this extra thinking time I’ve been doing some digital housekeeping.

Two things I love but haven’t shared.

My bad!

increased daylight — Two pigeons sitting in a springtime tree

These hacks have both contributed to a thing very close to my heart – getting a meaningful night’s sleep.

You don’t notice when you’re not left drifting the gloaming hours of darkness or pre-dawn. If sleep is interrupted for even just one night life becomes pretty miserable.

We lose the ability to manage our mood and confuse our tiredness for hunger. Confusing dehydration for hunger is for another post.

Lots of people have experienced some form of insomnia sometimes. Often followed by an insatiable need to snack or have a cry with no end in sight.

This, for me, is a perfect time of year to address the issue. The clocks have changed which regularly changes how I sit with the world and how an increase in daylight sits with me.

Days get longer and nights are shorter both contributing to that increased daylight.

It’s strange as we curse and grumble about winter’s long nights and lightning fast afternoons.

But when change comes as it invariably will (assuming we don’t get knocked out of orbit) we get the day bringing increased daylight even earlier.

How is your sleep?

I ordered some daylight blocking fabric from a well known online retailer (it’s not just the river running through Brazil, Peru and Colombia).

I also found 6 large bulldog clips – most likely another online purchase to ‘line’ my existing curtains (I’m no Domestic Goddess).

when you’ve had multiple nights of reduced sleep you’ll be craving a few cherished hours sleep.

Not waking with the sun is a revelation.

ANOTHER online purchase (forgive me local retailers) was a pair of blue light blocking glasses.

I think there’s a fair amount of agreement that our screens and devices emit blue light (essentially daylight) taken in by our pituitary gland (sits behind the eyes).

There are also daylight sensors in our fat! When adipose tissue doesn’t see daylight it could start to get us feeding as winter is on the way.

Hormones are shuffled to prepare us for sleep.

Our bodies don’t get a rush or a gentle drip drip of naturally created melatonin because our eyes have sat near bright screens becoming confused by their endless daytime. Natural daylight is far more easily ‘read’ by our bodies.

Normally we are pleased when we are MORE connected to the world. Physically with outside and nature or digitally allowing us to spend time with family.

It feels wrong to cut ourselves off from everything around us but choosing to temporarily block out the sun (and fake sun) is well worth it!

Aim to be the Master of your Universe

Aim to be the master of your universe

Amazingly, we can be the victims and masters of our own minds at the same time!

Remember, we are in charge of how our mind chooses to busy itself. We have the option to be the master of our universe.

I don’t always hear that recognition in the voices around me?

Aim to be the master of your universe

Before we continue I’d like to extend my condolences and best, best wishes to Ann Boroch’s family and friends at this sad time.

I was writing this post when I heard about the suicide of a compassionate, determined and skilled naturopath in the US who, over a decade ago started to heal herself of MS. She was facing a life of increasing immobility but instead of accepting her fate she researched and found a form of no sugar diet to rid herself of overgrown candida could go a long way to keeping herself well!

Sadly, Ann Boroch seemed to have lost her fight in being the master of her own universe.

We all face a range of challenges every day.

Some of which can sink us but others we seem to be able to skip through.

Aim to be master of your universe.

What is it that can make that difference?

We know nothing of Ann’s personal demons but these

5 strategies can smooth life out and we can start to feel like the master of our universe, again.

staying in charge of our breathing can help knock the edges off a rising panic.
Feeling like we’re being listened to can make all the difference, too.
Finding something we like to do whether that be crosswords, jigsaws, catching up with friends, taking a walk in the park or pirating knitting patterns (illegal distribution is not recommended).
Visualisation: The first job of our brain is to keep us alive and has been for a very long time. The brain goes through some mental gymnastics to stop us getting damaged, again. We imagine ‘what might happen if…?’

When we can feel in charge of something in a world where that’s often not the case life generally flows more smoothly. The image below shows it can be taken too far and we can feel isolated… but safe.

I appreciate this is sounding very US West Coast/Californian especially to a society that’s just finding out what Brexit might mean for us and our universe but still, we’re in charge of what goes on in our heads.

‘Coping’ with stress is an adaptive function that has helped keep us alive.

The same turning over of ideas that so far has saved the human race can also work against us. Be aware of any shifts in thinking.

We’re wired to worry and it takes conscious effort not to follow the same path. Endlessly going over stuff doesn’t serve us and can become addictive! Even more so if we don’t make any changes in response to the fretting.

One trick (easier said than done) is to get out of the habit of stressing about stuff!

How can we stop the release of cortisol that accompanies the fight or flight response? We become primed for action, our body stops digesting food, gives us a natural boost of anti-inflammatories to reduce possible pain, our arms and legs are ready to get us out of danger.

Before blind panic sets in write everything down and perform a mind dump. This simple action can nearly literally take the thoughts out of our heads.

Learning ways to reduce our worries is the first step toward leading a calmer life. as a 20 minute interview with Dr Rossman spells it out for us.

With some tweaks to what and when we eat life can feel a lot more rosey!

Zietgeist? Shine a light!

porthole in a decompression chamber — room with a view

This post will be about issues brought up in Face the Facts on wednesday the 16th July.

The radio show was talking about the how parents of children with a chronic condition were feeling compelled to pay for treatment that might benefit their autistic children as that particular chronic condition, in their opinion was falling through the NHS’s net.

I appreciate there are a number of folk that say autism IS curable through dietary strategies (I’m hoping one of them will do a guest post on here in the future) but for the moment we’ll call cases of autism manageable at best. Parents feel they have no choice but to look for alternatives to the standard NHS care offered to them.

This is a copy of my letter to the face the facts show:

Hello, I have MS (another chronic condition that is chronically underfunded by the NHS).
An interesting report from the Commonwealth Fund came out a matter of weeks ago (on an earlier post ‘The NHS is Tiptop… and not‘). In it a US think tank (with an axe to grind about the US’s aversion to adopting universal healthcare perhaps?) released an analysis on the state of Western healthcare, the NHS came out on top with the US spending the most and coming in bottom on nearly all measurements. The UK was bottom of the list of ten for chronic conditions.

I have been taking hyperbaric O2 at my local MS Therapy Centre for the last three years, this sh*t works. I’m not cured but it helps bladder and fatigue issues and, as an added extra, a session in the tank lifts my mood (Look up effects of chronic, low level hypoxia).
It’s like the difference between going out on a blue sky day compared to a grey day – you can’t measure the difference but there is one. MS Therapy Centres might become another subject for John Waite’s Face the Facts?
If he’d like to look into a therapy that is providing benefits to a range of conditions including stroke I’d be happy to be a first point of contact as a trustee for my local centre. They can also be contacted centrally here.

We are a network of 50 or so independent charities around the country that were set up by people with MS for people with MS in the early 80s to initially provide this therapy in particular. Now many other therapies are available to more than just those with MS.
They set this up before the internet and JustGiving! that’s a story right there, isn’t it?
MS has a similar set of symptoms to stroke (stroke’s vascular aspect takes an acute form) while MS has been described as a slow motion stroke and shining a different type of light it has also been suggested we rebrand MS as a form of dementia (the brain atrophy we experience from early on in the disease process is the same brain shrinkage seen in the elderly)

I’ve been reading and trying lots over the past 20 years to try and reduce some of the symptoms of this condition. I think I’ve learnt what NOT to pay too much attention to but I’m always interested in hearing about more stuff.

Alternatives are the best way to go!

Neurologists tell us that MS is an auto-immune disorder. We know people with MS have scarring in the brain. lots of individual people say the scarring in the brain is down to all sorts of things and auto-immune issues don’t really come into it. In truth, in over 150 years of ms having a name researchers still can’t say what causes the condition. On the whole I think it helps save my sanity not to explore how this situation has arisen. I don’t believe all these researchers are stupid so why have their efforts been so woefully unfocused so far?

“Follow the money” is usually fairly good advice when investigating most gnarly questions and I don’t imagine it’s any different here. But this thought pattern doesn’t get me anywhere so I won’t continue expending energy on it.

The closest anyone can come to defining MS is calling it multi-factorial, some sort of a combination of disordered immune activity, congenital vascular defects, reactions to infectious agents in the air we breathe and the food we eat, viral triggers and… the list goes on!

Whatever may bring it about, MS can be considered a disease of inflammation in the brain.

Uncertainty seems to be all we can be certain about with MS but at least people are looking… in a variety of places.

Since the 1830s a vein running through the centre of lesions in the brain has been noted in post mortem studies of MS’d brains. This suggests MS is a vascular disorder where cerebral blood flow is restricted or at the very least not optimal for a happily functioning brain.

What I have chosen to take from this somewhat muddy, unresolved and frankly disappointing situation of indefinite research that seems to take us no further along a treatment route (except perhaps interminable antibiotic protocols) is that there are many other things I can do to try and make my life a little better.

It took me a while to reach this point and I still sometimes howl at the moon at the injustice of less than useful MS research. But if there’s one thing MS has given me it’s an understanding that life isn’t fair so, nowadays I focus on what I can change around me.

Exercise of any sort possible every single day. We’re not talking team sports although go for your life if that’s your bag.
I’m pleased when I can do either press ups on the stairs, standing for any length of time, moving limbs generally,
I think I’ve mentioned the rebounder elsewhere
Trying to increase how long I can hold the plank for,
some Pilates movements – building a core is helping me walk it’s at the foundation of all movement,
Exercise bike at various resistances and dancing (not in front of anyone though!)

I’d imagine dancing would be good exercise as it involves controlled, coordinated movement in step with someone else. Table tennis is supposed to be a good game for involving brain and limbs and eyes and asking them to work in concert.

I’m hoping increased muscles generally and in the trunk particularly will contribute to keeping walking. Also, further exertion for muscles would demand extra bloodflow which should eventually increase circulation around the brain, I’m choosing to believe.

The Art of Medicine

TThis post takes in considerations of end of life and midlife care. I believe it’s not until we can comfortably consider life and death as part of the same thing (that’s going to come to us all) that we’ll never truly do the best for people who need our help. Think Hakuna Matata and the circle of life if it makes it any easier!

We’ve had quite a time to think of medicine purely in scientific terms but a good doctor is so much more than a trained health professional enthusiastically dishing out antibiotics.

“Andrea Williams, the chief executive of the Christian lobby group Christian Concern, led criticism of Ashton. “To say that it’s care for a doctor to kill is … a complete denial of their Hippocratic oath,” she said. “A doctor is there to care for the patient, not to kill the patient. Midwives joyfully bring life into the world. It’s not a doctor’s place to play God at the end of life.”

The words above were in an article in the Guardian on recent pronouncements of retired health professional, Prof John Ashton. He has held a number of positions advising on the role of medicine in our society to governments of the day.

I think Ms William’s stance on the meaning of the Hippocratic Oath perhaps accounts for why the NHS believe that they’re winning so long as their patients aren’t dying.

Life is more than a binary process: either being alive or dead.

“First do no harm” is the part of the Oath that got spouted at me when i spoke with either GPs or my neurologist about the theory of CCSVI. It believes that narrowed veins in and around the head lead to a slowing down of blood and a resulting de-oxygenation of blood feeding the brain. This lowered O2 can lead to slowed mental processes, lowered mental acuity and low mood.

If we acknowledge that potentially reversing this process is within a medical professional’s ability to reduce this activity then are these professionals not actively doing harm in doing nothing?

How did coronary angioplasty ever get past the First, do no Harm rule for folk suffering from narrowed arteries around the heart? This rule was flouted because it could be seen by a medical professional in the late 70s treating someone with a heart attack that widening the tubes around the patient’s heart would give some relief to the effects of angina even if the procedure did involve breaking his skin at the top of the thigh.

It’s apparently not considered a major incision so that takes care of that flouting then!

Back to Ms Williams’ feelings: I believe it’s the healthy person’s fear that lies at the heart of extending life at any cost. Quality of Life is more important to the patient than it is to anyone around them.

Even the best, most caring nurses who have chosen the vocation of nursing which is all about the compassionate care of others can’t care about their patient’s wellbeing more than the patients themselves.

The ill live in their body 24/7. Their experience of their body doesn’t involve being accessible by means of an emergency buzzer or cord. Facing up to the quality of that life forces us to face our own mortality. I believe it’s cowardice that’s helped us to this predicament.

An unwillingness to face our own mortality perhaps explains why we seem to put an uncomfortably high proportion of the total NHS spend toward paying for drugs rather than ensure more patients have a comfortable death?

I’ve not checked out the statistics but it seems once we face up to what’s going to come to us all we can better prepare for the ones facing the inevitable, sooner.

This clip from Canadian TV was also at the back of head whilst writing this post

Horses greater than zebras?

It was in the news today, in the Independant that Britain is woefully under represented by scientists and mathematicians. We seem to have a greater number of media studies graduates.

The winner of a third of the Nobel Prize of physiology and/or Medicine, Randy Shekman, (received in December 2013) has announced his lab will no longer put forward papers to a number of “luxuryjournals” such as Cell, Nature and Science as he believes their processes are no longer about the joy of finding stuff out but have been instead featuring sponsored adverts for various pharmaceutical companies (allegedly).

Fiona Godlee, editor of the British Medical Journal (BMJ) said “We have a situation where research has been put to use for marketing purposes, rather than for science”.

She also talks about science to the House of Commons where, out of the 600ish MPs, there’s only one scientist. Speaking as a patient who hopefully might eventually benefit from the doing of science I’m in full agreement with the Nobel prizewinner and the editor.

From my end of the telescope it feels like there’s not alot of innovative science being done in my condition. It feels a bit like Alzheimers and Type III diabetes/lifestyle instigated dementia have grabbed the research dollar as dementia seems to have become the new cancer – we’re frightened it might happen to us or it’s happening to our grand/parents already.

I appreciate the absence of a grasp of the finer points of this argument could be because I don’t have a career in this area so, of course I won’t be up to date with what’s happening in the field. But I’m also reminded of the statin prescribing debacle which Ms Godlee was almost at the centre of. I’m sure 10 or more years ago there was talk of groundbreaking research that could shine a light on various degenerative brain disorders including alzheimers and MS but we don’t seem to represent a big enough market share although some drug companies have done very well out of somewhat effectually treating us and so research gets paid for the larger patient group/biggest earners.

Does that make me sound bitter?

good.

It should.

Sometimes it feels like some marketing men and MS researchers need to be reminded that denial isn’t just a river in Africa.

“Denial is defined as knowing that something exists, but deliberately refusing to acknowledge it for ulterior motives.”

Serving as a full stop to this post I’d like to give three cheers to alltrials.

if any of us have ever taken a medication or figure we or loved ones might do in the future we need to make sure we sign this

half of all trials undertaken aren’t reported.

Not trying to be a stickler/kiljoy/pedant but before we hope for better treatments let’s get a true picture of what’s already on the table.

NHS is tiptop… and not!

one step at a time — light at the end of the stair

This just released: The UK’s National Health Service is tiptop and beats many other nations’ healthcare of and for its citizens. This is fantastic news but not necessarily surprising that we do better than the US who spends more on its health service and still turns people away at their hospital door with no offer of care.

The Commonwealth Fund, a Washington-based foundation which is respected around the world came to its conclusions after studying 11 healthcare systems from around the developed world. Only New Zealand (£1876) spent less per citizen than the UK (£2,008). The US spent just over £5000 per capita.

One area the NHS features almost last in the rankings is care of the chronically ill.

This may not come as a surprise to anyone with a chronic condition in the UK!

The NHS are winning as long as we, its citizens aren’t dying.

The quality of those lives being lived aren’t really taken into consideration so looking after yourself is sometimes the safest or only position to take. Finding alternatives to side effect laden pharmaceutical treatments which often offer only marginal benefits is what 21st century healthcare has begun to be about.

A few years ago I took a self-management course in ‘Long term Health Conditions’ with EPPCIC which I found invaluable. My fellow students on the 6 week course of 2 and a half hours a week included an MS patient, a lady with COPD, someone with type II diabetes and a selection of rheumatism and arthritises. Attending the course is normally arranged by a gp but it was also possible to refer yourself.

I’ve found taking control of an aspect of my life to be really (apologies in advance) empowering.

I now attend and have become a trustee of the Huntingdon, Peterborough and Cambridge MS Therapy Centre. I get sessions in their hyperbaric chamber and breathe oxygen for an hour. Breathing 100% O2 at pressure saturates the tissues in the body which brings a host of benefits. Australia and the USA are aware of its healing capabilities and their athletes and sportsmen take some oxygen sessions if they have a broken limb and want to speed its recovery or just to boost their performance.

Finding any small benefit often using an alternativce therapy is a huge win for anyone with a chronic condition.

Inflammation? Oohh Matron!

garlic's good for you. — garlic has many and varied benefits not just its vampiric connections!

ms* was described as an autoimmune disorder on wikipedia and then a few years ago it was changed to an inflammatory disease. I’m not holding wikipedia up as the fount of all knowledge but yes ms, parkinsons and alzheimers all have a degree of neurodegeneration perhaps brought on by swelling in the brain (not necessarily of the entire brain).

Our lesions, if they were visible would look like swollen, red areas you’d get around a cut on your skin. This swelling is the body’s ‘soldiers’ standing about and making sure no infection takes hold. Glial cells provide support to neurons which send and receive the messages that control our body’s functioning.

There are four members of the glial family: microglia, astrocytes, myelin and oligodendrocytes which create a structural framework for neurons, they maintain homoeostasis and offer protection from harmful bacteria and drugs. They either clear up damaged cells or, having gone rogue they mistakenly nibble bits off myelin (like pipe lagging around nerves) causing a neuron’s messages to get mangled.

Whatever your preferred belief system, inflammation is present in both the vascular injury model of ms (with us through postmortem studies since the mid 19th century) and the autoimmune model that has held sway since the 1920s (which coincidentally is when drug companies began their inexorable march to world domination). Theories seem to be changing and it’s worth looking into a few of them so at least you can talk with your caregivers rather than just being talked to.

All human’s brains shrink over time, msers especially (and to some extent those on the way to becoming type II diabetics, Alzheimers has been dubbed Type III Diabetes by some in the medical profession). It certainly seems an awareness of what we eat can’t do any harm as there are some changes we can make to our daily lives that could have an impact on the day to day functioning of our brains.

About 8% of our brain is made up of stem cells so yes, brain cells do have the potential to regenerate and in healthy brains there is a constant turnover of these glial cells which are created as, where and when they’re needed.

As the brain is approximately 50/50 fat and water (more like 60;40 but i can’t remember which way round) how we choose to consume both fat and water can make a real difference. There are lots of resources online to suggest ways of ingesting fats that your brain would appreciate but it also seems to be about what we choose NOT to eat that can help here. Our bodies have little need of pastry, bread, pasta or biscuits.

Blood sugar imbalances brought about by too many carbohydrates over many years in the diet (which turn into sugars in the blood) which eventually fuel our muscles and brain need to be paid attention to.

Avocados are a pretty good food for us and keeps our brains happy too or so I’ve been led to believe by various online resources (not just the avocado marketing board).

Too many carbs damage the brain as does too few.

All this looking after ourselves is far from straightforward!

Get with your body’s new program and look for the alternatives!

Happy googling!

*I choose to keep ms in lower case as it seems to have less importance to it (in my own tiny mind anyway).

Decisions for the The Long Game

As an owner of a chronic condition things could go better if we think of life a little differently. I don’t want to be at an increased risk of getting Alzheimers and this strategy could be a way to reduce that risk.

One thing that we definitely do have control of is what we choose to eat and not eat. There are a host of folk online who have thoughts about what, when, where, how and why we should make certain food decisions. I very much hope this site doesn’t slot into that category, as somewhere that uses the word ‘should’ alot (I’m trying not to use it on myself) so, please let me know if there’s any whiff of the preach going on here!

I spend quite a lot of time online and it’s not always cats playing pianos, although there is a bit of that. What we choose to fuel ourselves with can’t NOT have an effect on our output.

When we have a certain amount of degeneration on the cards any and all slight wins are vital but “my leg doesn’t drag as much” sounds very like a lack of success to the fit and healthy.

There’s always going to be a mismatch between the outlook of both groups of people but if you can tread a path through what consultants say and what you feel then you’re winning!

Check back to see what’s caught my eye recently (this is just as likely to be something about cats and pianos as it is a recent study on nutrition or exercise).

All Clear Above and Behind… I have control.

sky at the end of a summer's day — finding control

I used to go gliding when I was younger; the end of the title of this post is the response of a trainee glider pilot given in answer to their instructor’s statement at the beginning of the title so the instructor knows you are aware and conscious and ready to take hold of the controls.

It felt unnatural at first: being catapaulted up into the air from the ground or getting towed into the sky behind an engined plane. When the cable gets released both methods involve being left hanging in mid air. The first realisation that there is no safety net is a bit the way I felt when I read about the condition (MS) I’d been recently diagnosed with.

We’ve received some news we’d rather not have.

But it’s here, what to do with it now?

I believe we have an awful lot of choices available to us in life, perhaps slightly fewer if we’re incarcerated. A failing, unreliable body isn’t quite incarceration, although, occasionally, it will feel that way.

Perhaps you’ve ended up here after looking for a definition of what a chronic condition is and what can be done about it?

We all make choices every day, the language we use to refer to those choices I think is very powerful and if we’re not careful, can become counter-productive. I don’t believe it’s healthy to talk about ‘fighting a battle’ and thinking of our bodies as a battleground, an inhospitable, dangerous environment. It seems to have become a scarily common description of illness generally, it perhaps suits some situations but far from most.

I and many others like me with a chronic diagnosis under their belts are very lucky and instead, we own a condition that isn’t on the verge of killing us. I think the battle analogy to describe illness most often gets applied by those whose bodies can generally be relied on and if the well think of illness it’s the sort that is acute or terminal. It certainly doesn’t appear to be the chronic, invisible sort.

Our bodies on the other hand are into this predicament for the long game, our conditions are chronic which means, on the whole, they aren’t deadly (there’s a debate to be had here but basically we’re not in imminent danger of croaking). Our bodies could do with some gentle encouragement to perform as best they can.

Having a chronic condition gives us the time to learn to communicate better within ourselves. It seems (broad generalisation here) society has not been listening much up to this point to the collection of chemical processes, skin and bones that carry them around all day.

We need to learn to cosy up, coax and persuade rather than stick our fingers in our ears and ignore the many messages our body sends every day employing any number of analgesics, social anaesthetics or purely symptom addressing pharmaceuticals.

We need to become dancers, willing to listen to our partners, our bodies a little better. This analogy works much better for me than being told to be like a foot soldier. Perhaps we need to think of ourselves also as creative managers?

The term ‘management’ I think is taking up a different space in this day and age. It used to carry regrettable connotations that conjured up images of unneeded and ineffective middle managers who don’t listen to their workforce and in turn aren’t listened to.

On a bad day managing my disease can feel a bit like how I imagine the deckchair manager may have felt in the last minutes before the Titanic sank – pretty useless and surplus to requirements.

On bad days I feel like my body is listing and yawing on stormy seas and no matter what I do I can’t stop it failing to find its comfort zone, it’s sweet spot. Those are the days I try and arrange not to force or test it.

It’s very different on good days. I can focus on the things I’m choosing to do that cause my life to feel better.

Whether, by the numbers, it actually IS any better (like a reduction in symptoms) is unimportant. How we feel about our condition and ourselves is ultimately, the only thing we definitely have control over.

Our state of mind is a mighty big thing!

thanks for your time so far. I’ll try to keep the posts a manageable length as I appreciate none of us like to squander our time. This occasional journal is a place for me to note my responses to various things around me, I hope they might interest more than just me!