Tag Archives: health

Clueless

I get quite a bit of flack on my blog for dismissing currently popular theories on what causes or cures diseases, in particular that certain foods make us sick or that we can eat ourselves well.  Food, and the effect it has on our body, just isn’t that simple.  For example, we were told for years that saturated fat was bad for us, and then along came coconut oil which despite being a saturated fat actually lowers bad cholesterol and raises good, blowing the saturated fat theory out of the water.  And as I’ve mentioned before on my blog, my parents eat an almost identical diet yet my Mum’s cholesterol is high and my Dad’s is low so there’s obviously more at play than simply what they’re putting in their mouths.

When I developed M.E. I was working on a luxury cruise liner and as an officer I ate in the passenger dining room.  Breakfast was a smorgasboard of wonderful fresh fruits and my evening meal was fit for a king though I opted for salads much of the time as I didn’t want to gain too much weight.  I’m pesco-vegetarian and have never been a big drinker.  In addition I was a regular at the on-board gym and spent many of my evenings dancing the night away.  I lived as “healthily” as it is possible to do yet I still got sick.  My booze guzzling, overweight, smoking, “unhealthy” colleagues did not.  How freakin’ unfair is that?!

My Mum has smoked since the age of 14 and hasn’t exercised for as long as I’ve been alive.  As a consequence her lungs are fucked, she has had a heart attack and her kidneys are packing up.  But despite being an alcoholic for the past 6 years and doing nothing to help her situation, she is nearly 80 and the tumour the doctors found on her lung turned out to be benign.  Her sister, on the other hand, never smoked, didn’t drink, walked everywhere as she couldn’t drive and cooked every single thing she ever ate from scratch yet she died from cancer at the age of 78.

My cousin, the eldest daughter of said Aunt, is 60.  She met her husband when she was a teenager and they have been blissfully married for 40 years.  Neither smoke, rarely drink, are slim, walk daily in the beautiful clean air we have here in the Lake District, her husband is a regular at the gym and my cousin used to teach home economics so is an accomplished cook and like her Mum has always made every item of food from scratch.  They own a second home in the South of France so took early retirement in their fifties and now spend 6 months of the year relaxing by the pool in the sunshine.  You couldn’t find a couple of who live a happier, healthier lifestyle yet both have cancer.  My cousin breast cancer and her husband chronic leukaemia.

In addition, my cousin has zero Vitamin D levels.  How can a person who spends 6 months of every year lying in the mediterranean sun have absolutely no vitamin D when current guidelines tell us that spending just 15-30 minutes each day outside will give us all the Vitamin D we need?  It’s clearly not quite that simple.  Disease, in general, isn’t quite that simple.

My Step-Dad’s Mum moved into sheltered housing at the age of 56, after which she didn’t exercise a day in her life.  She weighed 20 stone (300lbs) and had diabetes, yet despite having a regular blood glucose level of 16 (should be under 7) she didn’t really have any problems and ate whatever the hell she liked.  She lived until she was 103.  103!  And only entered a care home when she was 99.

Much is spoken these days about genes and genetic susceptibility to disease but it’s a very complex area.  I came up negative for the genes associated with Dupytrens Contracture, for example, yet already have a Dupytrens nodule in the palm of my left hand.  DC affects 4 times as many men as women, yet I am female.  When it does affect females it tends to be mild, yet my Mum has severe DC in both hands and has already had three unsuccessful surgeries.  It usually affects the right hand, yet I have it in my left.  So in my case everything I read about DC has turned out to not apply.

My Mum has Ehlers-Danlos, yet has never had the pain or dislocations from which I suffer.  I’d also bet my house on the fact my Brother has the EDS gene yet has never had a single symptom.  If we all have the same genetic disease why is one person crippled with it and another not (and why does the crippled person have to always be me?!).

If exercise staves off Dementia why does my Dad, who until 4 months ago walked the fells every week and who has the blood pressure and cholesterol of a 21 year old, have it?  If eating broccoli staves off Dementia my Dad should never have developed it – he loves the stuff.  If keeping your brain active staves off Dementia why hasn’t it helped my Dad, who regularly does the crossword, has the best long-term memory of anyone I’ve ever met and can work out the maths of a dart board before I’ve even turned my calculator on?  My Mum, of course, has slobbed infront of the telly for the past 15 years smoking and drinking yet her brain is still as sharp as a tack.

As far as I can see we are fairly much clueless as to what causes disease.  We don’t even know why if you put 3 people in a room with the cold virus 1 won’t develop a cold, 1 will catch the cold and 1 will get pneumonia.  If drinking to excess, smoking and not exercising kills you my Mum should have been dead twenty years ago and her sister should have lived another thirty.  Smoking destroys collagen so you would think that my Mum’s EDS would be much worse than mine as a non-smoker, yet the opposite is true.

If I were healthy I swear I would just live however the hell I liked.  I would drink and eat whatever I fancied.  I would exercise if I wanted to and not if I didn’t.   It appears to me that health, for the most part, is as much a game of Russian Roulette as anything we do or don’t do.  Life is too short to live it denying ourselves pleasure or doing stuff because we think we should, not because we enjoy it (does anyone really enjoying spinning classes or doing 30 crunchies before breakfast?!).  Now where did I put the humongous box of Wine Gums Santa so kindly left under my tree……….

 

 

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Rural health inequality

I’ve lived in both a city (Wolverhampton), a market town and a rural village and there is no doubt about it – people who live in the countryside are discriminated against on every level.

A good friend of mine lives in London.  There are no less than 3 hospitals within a one mile radius of his house.  I live in Cumbria and my nearest hospital is 30 miles away.  If you need more specialist services, like treatment for childhood cancers, female cancers, heart, lung or spinal surgery, or allergies my nearest hospital is 90 miles away.  There is no public transport in my village and it is impossible to survive without a car.  If I wanted to visit my local hospital via public transport, I’d first have to pay £15 for a taxi to my local town, then catch the train to the city then hail another taxi to the hospital……and back again, which would literally take all day.  When you’re really poorly the effort of making the journey to a hospital makes you feel more ill than the ailment from which you suffer and one of the reasons I barely ever saw a Doctor during my ten bedridden M.E. years – I was simply too sick to get there.

Can you even imagine what would happen if Great Ormond Street, the Royal London and Guys all moved to Cheltenham or Ipswich and it took Londoners a taxi ride, changing trains 3 times and another taxi ride to get there with a sick child, a cancer patient or a frail elderly parent?  It’s unthinkable, yet rural people are expected to just get on with it and not make a fuss.

If you’re unlucky enough to be admitted to hospital as an emergency, and go in an ambulance, you have absolutely no way of getting home again.  My neighbours, both in their seventies, recently had this experience and were discharged from A&E at 3am, in their pyjamas.  They then had to hail a taxi to bring them the 30 miles home which cost them nearly £80.

When my Mum had her lung surgery over in Newcastle my Dad and I visited her for ten days.  That’s a 180 mile drive every single day, the cost of a full tank of petrol and an £8 parking fee not to mention meals.  It cost a small sodding fortune and I have no idea how anyone on a low income manages (my Dad paid for everything because I couldn’t afford to).  After discharge she then spent 2 weeks in our local hospital, where we visited every day.  A 60 mile round trip, petrol, meals and parking fee.

Following having half her lung removed, if we’d lived in the city my Mum would have been offered a 7 week rehabilitation programme with a team of specialist lung nurses and physios to get her up and moving again.  Only she lives 20 miles up the road in a town where no such programme exists so she was just left to get on with it.

As a Carer now for my parents I visit them 4 days a week.  This journey alone costs me £80 a month in petrol, which is a huge chunk out of my small income, not to mention the cost of buying, insuring, MOTing, servicing and maintaining a car.

There are 2 specialist centres for people with Ehlers-Danlos syndrome in England.  One is in London, 300 miles away from where I live.  The other is in Sheffield, 124 miles away which takes nearly 2½ hours in a car (there is no direct train).  It’s not do-able when you’re as ill as I am, especially if you need to go regularly and not merely as a one-off appointment.

I received an email from one of the EDS charities this week offering for me to attend an event “near you”.  Great, I’d love to!  Only it was in Leeds, 100 miles south.  Birmingham is 100 miles north of London but no-one would ever suggest that Birmingham is “near” London FFS!  The Lodon-centric attitude in this country drives me nuts – it’s as if nowhere else exists.  None of the conferences are ever held north of Birmingham, when they should actually be held in either Carlisle or Newcastle – at least that is the middle of the UK and would enable people from Scotland to attend.  But of course it’s a long journey to make from London, and the trains to get from London to Newcastle are dire, so no-one ever bothers.  Who cares what happens in “the north”?  It’s not like any of us matter.

I rely totally on the internet – it is my lifeline to the outside world.  It’s how I order repeat prescriptions, book doctors appointments, do all my banking, pay bills, do my grocery shopping and all other shopping.  Yet until last year my broadband connection speed was 6mbps and regularly cut out.  My mobile signal is no better and I can’t make a call at all from downstairs and only get 2 bars signal at most upstairs.  Which means not only do I have to pay for a mobile contract every month I have to keep paying for a landline contract every month too which doubles the cost of my broadband and phone bill.  My one luxury is having Sky tv who offer free broadband and phone services for their customers…….unless you live in the country where it isn’t “cost efficient”, so we have to pay an extra £20 a month for broadband whereas if I lived 7 miles away in town I’d get it for nothing.

Our nearest Hospice is a 60 mile round trip away.  Can you imagine being in your 80s or 90s and wanting to visit your dying spouse every day?  How would you get there if you can no longer drive?  And even if you could drive, how would you afford the petrol if you lived on the state pension?

The discrimination doesn’t stop even when you die, because guess where our Crematorium is?  That’s right, a 60 mile round trip away.  So you have the Church service locally, then everyone has to drive 30 miles to the city for the cremation, then you all have to traipse the 30 miles back again to have the ashes interred in the cemetery.  It’s outrageous to put grieving families through that and doesn’t half bump up the cost of a funeral because rather than hiring the funeral director’s staff and cars for an hour or two you’re basically looking at the whole day.

There’s a myth that everything costs less in “the north” and it’s the biggest fib ever told.  In some parts of “the north” houses might go for a pittance just like they do in some parts of the south, but here in the Lake District an average 3 bed house costs anywhere from £300,00-£450,00 which is 19 times the average local wage.  We hear all sorts on the news about the extortionate cost of housing for Londoners, yet nothing about the equally out-of-reach cost of houses in Cumbria.  A loaf of bread and a pint of milk costs the same in Tesco in Carlisle as it does in Tescos in Maidstone, yet the average salary in Carlisle is £18,000 while the average salary in Maidstone is £25,000 – guess who’s going to be worse off?

Maybe all us country folk should just move to the city.  Only of course then there would be no clean drinking water, cities not being known for their reservoirs.  No-one to grow our food, not that that’s going to be important after we leave the European Union.  No-one to milk our cows.  No-one to sheer our sheep for their wool.  No B&Bs or hotels to book into for our holidays.  No electricity because there would be no-one manning nuclear power stations which aren’t located in cities (who cares that rural children get leukaemia from the waste they produce).  No-where to film Downton Abbey.  No-one taking care of our beautiful green spaces or ensuring our wildlife doesn’t die out.  No-where for our military or our pilots to train.  No-where to go snow boarding, fell walking, horse back riding, canoeing or the 1001 other outdoorsy activities that some folks like to do.  No-where to study our night skies.  No-where to go to avoid the pollution so rife in our city air.  No-where to go to escape the hustle and bustle and to just sit in peaceful solitude.  Not to mention the fact we’d lose 20 million overseas visitors a year which would wreck the entire country’s economy.  On the plus side, at least there would be no tourists trying to climb Blencathra in their trainers and flipflops and no need for our mountain rescue team risking their lives to save them.  Bonus.

Of course it’s not feasible to have a hospital in sparsely populated rural areas, however there absolutely should be recognition of the fact that rural people are economically disadvantaged in accessing health care.  We should have free parking at hospitals and either quick, reliable hospital transport or vouchers towards the cost of petrol, train or taxi fees for both patients and their main carer.  If we have to travel out of the county there should also be vouchers for free b&b accommodation.

There needs to be a concerted effort to make health education available to all.  It’s impossible to take time out from the busy working life of a Consultant to attend a medical conference 300 miles away, just as it’s impossible for sick patients to travel halfway across the country to attend patient events, so much more needs to be done to hold conferences away from London and Birmingham and to ensure that venues are accessible by major train links.

Just because we live outside of cities shouldn’t mean that we receive both poor health education and poor health care.  We pay our National Insurance stamp and taxes just like everyone else, yet seem to get very little in return.