Author Archives: Jak

Weekly roundup

I did something exciting this week.  My great-gran, my gran, my Mum and I all have an Essential Tremor and last year Mum and I applied to take part in the world’s largest study on the disease.  We initially had to fill out a detailed questionnaire and to be honest I thought they’d exclude my Mum because of her drinking and the amount of tablets she takes and me for the fact I have several other diseases, but after waiting for several months we found out we had been accepted into the trial.  So we were sent a prescription for a blood draw, along with phials and a pre-paid Fed-Ex envelope and on Tuesday we had our blood taken at our local NHS health centre (great they agreed to do it for nothing!) which we shipped off to France to be gene tested.  The actual trial is being done in Canada but I think anyone applying from Europe will send their blood to France who will forward the results to Montreal.  My Nan’s and Mum’s tremor was so bad by the time they were 70 they couldn’t write their own name so researchers have 20 years to find effective treatment so that I don’t suffer the same fate.

I’ve made a new friend at my Camera Club.  She’s absolutely lovely and very kind hearted, so we had lunch together this week and talked endlessly about all things photographic.  I know I bore non-photographers senseless with my hobby, so it’s nice to have someone to talk to who shares my passion.  It’s incredibly difficult to make new mates when you’re largely housebound and meeting new people was one of the reasons I joined my Camera Club, so after going for 4 years it’s fab that I’ve finally clicked with someone although as people we’re very different.

Thursday I went with my Dad to see the spinal consultant about his leg stiffness and weakness.  Despite finding several bulging discs and some spinal stenosis on his MRI scan the Doctor wasn’t concerned and said he’s definitely not a surgical candidate.  So he referred him for physio and that was that.  My Dad already had a physio appt for the next day and the physio was also unconcerned.  He just told him to walk as much as possible and dismissed him from the Clinic.  I’m not sure how walking, which my Dad already did loads of, is going to help spinal stenosis so I felt disappointed that he’s basically going to receive no help.

My Cleaner (who also walks my dog two days a week) has gone down with a lergie, so hasn’t been this week.  My house was minging so I had to clean it myself as best I could on top of taking the dog out in the snow.  It’s typical it coincided with my period week so I was feeling pretty rough, not least due to a three day migraine and a fainting spell brought on by stupidly low blood pressure.  It’s no fun having to go out in a freezing winter blizzard literally 30 minutes after you’ve passed out and thrown up and feel so weak you can hardly put one foot past the other.  Bertie didn’t care though – he loves the snow 😉

Speaking of The Curse I had only my second ever totally-pain free period in 38 years, hurrahhh!  I’d been feeling achy and grotty for a few days beforehand but when I actually started there was zero pain, when usually I’m in bed with two hot water bottles feeling physically sick it’s so bad.   To think that most women have periods which are that easy is mindblowing and if you are one of those women you have no idea how lucky you are.  I have been crippled every four weeks since the age of 11 due to endometriosis and adenomyosis and my periods have felt like a form of torture, which is why I’m so desperate for them to end.

Thursday I’d arranged with a women in the next village to photograph her daughter.  I was doing the shoot for free in return for using the photographs in competitions and was also giving her 2 free mounted prints, which is a good deal by anyone’s standards.  We’d arranged it in December but she didn’t turn up, telling me she simply forgot even though we’d only spoken about it 14 hours earlier, and it’s taken her this long to ring me to re-arrange.  So I spent an hour setting up the studio and gear at 5pm, my worst time of day when I’m usually in bed, then I waited for them to arrive.  And waited.  And waited.   You guessed it, she didn’t turn up again and I haven’t heard a word from her since.  She knows I’m ill and I’ve no idea how she has the gall to be so to be so rude and dismissive of my time and energy.  She’s shot herself in the foot though because she also clips my dog every 6 weeks and if she thinks I’m paying her to do that ever again she has another think coming.

Unrest is being shown tonight at my local cinema.  I downloaded it on iTunes the day it became available so have already seen it but my best friend, who’s had ME for 18 years, hasn’t so I asked if she wanted to go and she said no.  She has no interest in the film whatsoever which just goes to show how differently we all cope with chronic illness.  There is no right or wrong way.  Everyone’s experience is different.  Everyone’s needs are different and we should be allowed to react to our situation in our own unique and individual way.  Whatever gets you through the day.

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Food Histamine Q&A

Someone obviously very new to the world of histamine in foods asked a question on my blog recently and it took me right back to when I was first really ill and totally confused and bewildered about the whole subject.  I’d barely heard of Histamine Intolerance when I was diagnosed and little of what I read online made sense.  All the low histamine food lists differed from one another and no-one seemed to be able to tell me exactly what to do or what to eat to get myself better.  So I thought I’d do a post of the questions I had 5 years ago in the hopes it helps my readers new to the world of histamine intolerance.  Bear in mind this is just my personal opinion based on my experience and research which I have read – I am not the Oracle of all things histamine and just a (still) bewildered patient alongside the rest of you.

Q. Why are all the lists different?  Why are some more strict than others?
A. All the low histamine food lists online are based mostly on the personal opinion of the Author.  No spice, food preservative, food additive, citrus fruit, chocolate, tea leaf, herb or much of anything else has been tested for its histamine content.  In fact, only a handful of foods (mainly fish, soya, sauerkraut, aubergiene/eggplant, dairy) have been tested for their histamine content, so the lists are mostly pure speculation.  I know that’s not what you want to hear, but it’s true.

Q. Is pak choi/vodka/lentils/bagels/insert-your-food-of-choice-here high in histamine?
A. I have no clue and neither does anyone else.  That’s because it hasn’t been tested for its histamine content.  Even foods thought to be high in histamine, eg. cheddar cheese, will differ depending on how it was produced, stored or transported.  A certain brand of cheddar cheese in Italy may test lower, or higher, than another brand of cheddar cheese in America.

Q. So which low histamine food list should I use?!
A. It’s entirely your personal choice.  None of them are THE definitive food list because that doesn’t exist.  My advice would be to choose a list you think you can stick to, give a go for 4-6 months and see if it helps.

Q. Does the cooking method affect the food’s histamine content?
A. There was a recent study showing that frying and grilling specific types of food increased its histamine content, whereas boiling sometimes decreased it.  However, it depended on the type of food.  Eggs, for example, showed little rise or fall in histamine regardless of how they were cooked but fried vegetables had more histamine than raw vegetables.  As with all things histamine it’s not as simple as fry or don’t fry, boil or don’t boil.  It’s not something I personally worry about.

Q. Why can’t I eat leftovers?
A. It’s the freshness of food which affects its histamine content.  The older the food, the more histamine it has.  So 2 day old leftovers are going to be higher in histamine than fresh food cooked and eaten on the day it’s bought.  At least that’s the theory, but again it’s not that simple.  Who knows whether “fresh” unripe bananas picked in the Caribbean, taken on an open truck in forty degree heat to a warehouse, sorted, repacked onto another truck to go to the docks, travel in an unfridgerated container for a week to reach England, put on another truck to a warehouse, then forwarded to Tescos in Preston, then packed in the boot of your car for an hour as you drive home, then sat in a fruit bowl for three days before you eat them are going to be lower in histamine than chicken soup you made yourself yesterday but have reheated?!

Q. Does refrigeration affect histamine levels?
A. Most of the research on this has been done on fish.  Little is known of the effect refrigeration has on eggs or carrots for example.  However, from the limited research refrigeration slows down histamine formation.  But if the food already contains histamine, eg the banana example above, it won’t reduce it.

Q. Does freezing affect histamine levels?
A. Freezing is the only thing which halts histamine formation.  However, it doesn’t destroy histamine which has already formed.  So if you freeze a week old uncooked chicken breast which already contains high levels of histamine the histamine will still be there.  My advice would be to freeze foods as soon as you buy them or freeze meals as soon as you’ve cooked them, then cook from frozen whenever possible or at least cook or eat as soon as they’ve defrosted.  I never defrost stuff for hours overnight in the fridge, preferring to defrost at room temp for 1-3 hours then cook and eat.

Q. What about histamine levels of canned foods?
A. As far as I’m aware no tinned goods have been tested for their histamine content and in any event it would probably depend on the type of food and how it had been stored and prepared prior to canning.  I guess tinned goods are on the ‘excluded’ lists of low histamine diets because they contain preservatives (which haven’t been tested for histamine either!) and because they’re considered ‘old’ and assumed to be high in histamine, but it is just an assumption.  The truth is no-one knows.  I eat tinned beans and don’t react to them in any way, but that’s just me.

Q. What about dried goods, eg. pasta.
A. Again, they haven’t been tested for their histamine content so no-one knows.

Q. What’s the deal with histamine liberators?
A. Histamine liberators are irrelevant in histamine intolerance as HIT involves DAO and HNMT not mast cell activation per se.  However, I know many people with mast cell disease also follow a low histamine diet, which is why I’ve included this question.  There is no such thing as a histamine liberating food as far as we know.  No research has been conducted that shows any particular food liberates histamine stored in mast cells.  This includes egg whites and stawberries.  Which doesn’t mean to say you don’t have a reaction to a food, but that it’s your immune system which is over-reacting to a harmless substance and nothing intrinsic in the food itself which causes a reaction.  I react badly to apples, for example, because I have a birch pollen allergy and they are related – it doesn’t mean apples are histamine liberators.  I take no notice whatsoever of information online which tells me some food or other is a “histamine liberator” and will continue to do so unless it’s proved otherwise through research.

I’m sure you’re now thinking “well what the hell do I eat and how can I know it’s low in histamine?!”.  The fact is the whole low histamine food area is a very very complex subject with so many variables it makes your head spin.  There is no easy “eat this and don’t eat that” solution, I wish there were.  The histamine content of any particular food depends on so many things including its age and the way it’s been picked, handled, transported, processed and stored.  It will differ from food to food.  A button mushroom in China may differ in its histamine content compared to a button mushroom in Wales.  Strawberries picked out of your garden will differ from strawberries imported from Israel.  And so on ad nauseum.

Nearly every article online about HIT refers to the same single research paper.  However, the paper is fundamentally flawed as explained in my Histamine in foods: the evidence page.  For example, it lists egg whites as a histamine liberator based on a worthless solitary study of animals in 1956 which was never published or replicated let alone tested on human beings.  Yet this has gone viral and now everyone treats it as fact when it is anything but.  The truth is the research evidence on the histamine content of food is poor and much of it is decades old – there were no refridgerated lorries in the 1950s.  In fact there were hardly any fridges in the 1950s.  We have come a long way in the last 70 years in how we pick, transport and store food which is why research needs to be up-to-date.

However, there is hope on the horizon.  A home testing kit is being developed in Germany which will enable us to precisely measure histamine in food.  This is the only way we will know for sure how much histamine is in the actual food we’re eating and it can’t come soon enough.

 

 

Weekly roundup

This week seems to have passed in a bit of a tired blur.  Bloody hormones, I do wish they’d bog off and leave me alone.   I type this with stomach ache, back ache, nausea, weariness, a weird head and a general yukkiness all because my period is imminent.  Knowing that the end is in sight, yet not quite being there, is so frustrating.  Pleeeease Menopause hurry it along so I don’t have to go through this crap every month.

My Uncle died on Friday, though it was expected and he was already in hospital.  It’s sad, but he’s suffered with awful ill health the past couple of years none of which was curable so even his children admit it’s a blessing. He’d had a long, healthy and happy life – you can’t ask for more than that.  It’s the Dad of my cousin with breast cancer, and to be honest I’m secretly pleased he’s passed away now so that she can bury him before her surgery at the start of February and then concentrate on getting herself well.

Despite feeling relentlessly rubbish I crossed something off my Bucket List this week.  I saw a Starling Murmuration up close and personal high on the Pennine fells.  OMG it was breathtaking.  It started with about 20 birds in a circle in the sky and within 5 minutes a thousand birds had appeared out of nowhere.  They danced and swooped almost silently, creating mesmerizing patterns in magical unison, and at one stage they were right above me so low I could have almost reached out and touched them – good job none of them needed the loo or I would have been pebbled dashed!

We were back at Camera Club on Wednesday night after our Christmas break and it was the judging of our annual Millennium Trophy competition, in which I came a respectable second.  The theme this year was ‘a panel of three’ so I tried something a bit experimental by simulating under water pictures.  The reason the judge gave for me not actually winning was that he didn’t like the fact the middle and right photos were dark at the bottom.  I was trying to convey the depth of the water but he thought it was unnecessary  – what does he know anyway 😉


As I’m aging, and as people around me die, I’m increasingly aware of how precious life is and how short.  Having been so ill all these years there is a probability that I will not live as long as if I’d been healthy and I have an urge to make every day count, so I’ve been looking for goals to set myself for 2018.  But they have to be things which don’t put me under pressure, things I enjoy and things I can physically achieve.  My first is to try for my next photographic distinction in November, which I think I’ve mentioned previously, and my second is to write more of my book which was shelved last year in favour of my photography and due to the health issues of my parents.  It’s tortuous going as I can only write one paragraph at a time, and then only on the days when my brain is clear enough, but I’ll keep plugging away because I’m determined to finish it and tell my story.

I received an email on Wednesday morning from the Lottery people.  “We have exciting news about your ticket.  Log in to your account as soon as possible.”  OMG I’m rich.  RICH!  So I log in with heart hammering and hands shaking……………to discover I’d won £4.30.  Guess I won’t be buying my own tropical island or hiring my own Chef any time soon then!

Thoughts from an old timer

My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.

I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field.  In the initial phase I was so ill I nearly died.  I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly.  And I’m not on my own.  I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease.  Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.

I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on.  But they are not.  The original ME sufferers have already been there, done that and got the t-shirt.  We have not laid in our sick bed and given up.  We have fought like cornered tigers to get better.  My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse.  Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.

Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired.  I don’t know how many times I need to say it.  M.E. has nothing to do with chronic fatigue.  Nothing.  NOTHING.

When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo.  This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food.  It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product.  A secondary symptom to the main event.  And so, I am utterly convinced, will be the “fatigue” associated with M.E.

I say this with such conviction because I have lived with M.E. for nearly a quarter of a century.  It started with a tummy bug, ie an immune event.  It then really took hold after gastroenteritis, an immune event.  I became severely affected following travel vaccinations, another immune event.  I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it.   None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else.  My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E.  Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E.  Food is not the answer, never has been and never will be.

M.E. is an immune disease.  End of discussion.  I don’t even think it’s an auto immune disease, but an acquired immune disease.  Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result.  It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.

The fact there are currently no answers is a bitter pill to swallow.  So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place.  Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either.  When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E.  And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place.  Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.

I’m not saying that people with M.E. never improve, though it is rare.  I’ve improved for no good reason I can find.  One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse.  Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods.  But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.

I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule.  They will find the cure that the millions of sufferers that have gone before them haven’t.  So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.

 

Vitamin D

Since my cousin’s breast cancer diagnosis before Christmas I’ve been learning more about Vitamin D.  I was aware that Vitamin D worked in tandem with minerals like calcium and magnesium as well as influencing our immune system, insulin secretion, bone formation and blood pressure regulation but I had no idea that recent research has shown that we have Vitamin D receptors in nearly every part of our body and as yet don’t know the importance these receptors play in health and disease.  In addition, research has shown a correlation between low Vitamin D and more severe breast cancers and high Vitamin D and increased survival rates, so our Vitamin D status is clearly hugely important yet doctors pay scant attention to it.

So what exactly is Vitamin D?   It’s not one substance but a group of fat-soluble compounds that serve as pre-hormones to the active form of vitamin D which is called calcitriol.  Within the group of compounds is vitamin D3, found in supplements, fish, egg yolks, and cheese and vitamin D2 which is synthesized by plants and is the form most often used to fortify foods such as milk.  We also make vitamin D in our skin when we get out in the sun and our skin is exposed to ultraviolet-B radiation (UVB).  This initial form of vitamin D, called 7-dehydrocholesterol, then travels to the liver where it is converted into another slightly more active form of vitamin D called 25-hydroxyvitamin D.  It is this form of Vitamin D produced by the liver that doctors are testing when looking for deficiency.  When vitamin D leaves the liver it travels to the kidneys where it is converted into the active form of vitamin D called calcitriol.  This is no longer considered a vitamin but a steroid hormone.  So Vitamin D is a highly complex substance embarking on a long journey which has the potential to go wrong at any stage.

Doctors can’t agree on how much Vitamin D is optimal for health and figures vary from 50-80ng/mL.  Figures on what constitutes low Vitamin D also differ, from under 25 to under 11ng/mL.

Although we get some of our Vitamin D from foods most comes from the sun.  In fact, recommendations from The Powers That Be say that we should get all the Vitamin D we need by exposing 30% of our unprotected skin to the sun for 5-30 minutes between 10am-3pm three times a week (though they don’t differentiate between the sun in Africa and the sun in Iceland!).  However, from the response to my previous post we know this is rubbish and that many of us could live naked in the Sahara and still have low Vitamin D.

When we have routine blood tests done and our Vitamin D comes back below normal we are simply prescribed supplements and sent on our merry way.  Not a single doctor asks why we are deficient, a situation I find mind blowing.

Doctors in the UK could be forgiven for assuming we’re just not spending enough time in the sun, especially in the winter, but the same can’t be said of people living in California or Perth yet they appear just as likely to be Vitamin D deficient as anyone else.  The obvious conclusion is that people in sunny countries wear more sunscreen which is blocking vitamin D absorption but research on this subject has shown conflicting results.  I personally hardly ever use sunscreen (I simply forget to put it on) and spend plenty of time outdoors both summer and winter yet my Vitamin D has been below 20 for at least the past five years.

We could assume we aren’t absorbing Vitamin D properly but where is the proof of this, and even it is the case why are we not absorbing? What’s going on?  The answer: Vitamin D is such a complex substance the reason for low levels could be down to any number of things or even problems about which we are currently unaware.

We can’t look at any one blood result in isolation.   Other substances like Vitamin K, Boron, Vitamin A, Zinc and of course Calcium affect Vitamin D, though my bloods show that for me these are all well within normal ranges.  Magnesium also helps Vitamin D to work, so if you’re low in magnesium you’re not going to be utilizing Vitamin D properly.  However, my recent blood test shows that I have too much magnesium in my system yet my Vitamin D is still low, which muddies the already unclear waters.

Lots of us with low levels of Vitamin D in our blood take supplements despite not knowing the reason for our deficiency (which might be nothing to do with needing more Vitamin D), but even the information on supplementation is hugely confusing.   In particular the level we should be taking can’t be agreed upon and my cousin with breast cancer was already on a supplement yet still had virtually no Vitamin D in her blood!  In addition little is discussed about the perils of supplementing.  For example, taking high doses of Vitamin D can affect Calcium levels, too much of which can cause kidney stones and calcification of the arteries increasing our risk of cardiovascular disease.

The more I’ve read about Vitamin D the more confused I’ve become and the more I’ve realized how complex this one little Vitamin is and how little we actually know about its role within the body.  One study says sunscreen is to blame for deficiency while another says it has no impact.  One study says we should supplement while another says unless we know the reason for low blood levels we absolutely shouldn’t.  It leaves my head spinning.

Once again I would never have known my Vitamin D levels were below normal had I not requested a print out of my blood results.   My GP has never mentioned it or suggested I need a supplement, which is hugely disappointing, and I have absolutely no idea why my levels are low. Off my own bat, and not knowing whether it’s the right thing to do or not, I have been taking a supplement in the form of a liquid drink (my mast cells as you know dislike tablets), but I won’t know how effective this has been until April because the lab won’t re-test Vitamin D levels within one year of the previous test.  I only hope I’ve not buggered up some other vital mineral in the process, or made my already high magnesium levels even higher.

 

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 food 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……….

 

 

You’re in the army now

My immune system is currently like a crack SAS unit.  Not content with being a private in the army and taking a week to fight off the enemy with a bayonet it wants all intruders dead immediately, if not sooner, even if it puts itself at risk in the process.

I went to bed on Saturday night perfectly normal.  Not a hint that there was anything amiss.  Woke up Sunday morning and before I’d even opened my eyes I was sneezing.  I often sneeze first thing in a morning so didn’t think much about it, but 2 hours later when I’d gone through four man-size hankies and produced enough mucus to fill a bucket I did wonder if something was up.  By 2pm that afternoon my nose was like a tap and my eyes were “full of cold” (is that just a northern saying?!).  Come tea-time it was official – I had the lergie and felt absolutely rubbish.  I could barely keep my eyes open, was chilly and headachy, and so tired I was spark out by 9pm.

I slept through the night and woke Monday morning completely back to normal.  Not a sniffle, not a drop of snot, nor any sign of a virus.  Brilliant, but obviously flippin nuts.  I mean, who develops a streaming cold and gets rid of it in less than 24 hours?!

It hasn’t always been this way though.  When I was first developing M.E. I had the classic one-virus-after-another situation for months until I finally contracted gastroenteritis which was the beginning of the end.  I also remember about 5 years ago having no less than seven cold viruses in one winter, and even had three different cold strains at the same time!  But this year while everyone around me has dropped like flies with everything from the winter vomiting bug to Aussie Flu I’ve remained virus free.   Quite what leads my immune system to be either stupendously lazy or ridiculously over-zealous is a mystery.  I just wish it would settle for the rank of Officer, commanding the troops with knowledgeable efficiency from behind the front line, rather than being either cannon fodder in the trenches or a heroic lone sniper both of which are likely to get it killed.

It’s the Holy Grail isn’t it?  Finding a way of returning our immune system back to normal so that it’s neither over, nor under, reactive.  So that it treats the world with healthy suspicion rather than a complete loony toons attacking everything in sight, or a total coward hiding under the duvet.  I pray the cure arrives soon because my poor immune system is exhausted from its game of Jekyll & Hyde and I’m plain fed up of dealing with its schizophrenic behaviour!