Category Archives: Medical & treatments

Killed by M.E.

The death of a young British woman has officially been attributed to M.E. this week and is the second time in Britain an Inquest has recorded M.E. as causing a sufferer’s passing, the first being Sophia Mirza in 2006.

Merryn was 21 and had suffered from severe M.E. since she was 15.  In the end she simply couldn’t tolerate food and starvation lead to her tragic death.  When I was severely affected I was simply too weak to eat solids.  In those days M.E. wasn’t treated in any way and my GP just said to get some Complan from the chemist 😦  I lived off smoothies for a year which in no way provided enough nutrition and, like Merryn, weighed under 6 stones (80lbs/36kilos).  When I was hospitalized they sent for the psychiatrist who put in my notes that I was anorexic – I couldn’t get them to understand that I was starving and wanted to eat but my body just wouldn’t take food!

Reading through Merryn’s story it was interesting to see that her M.E. began with hives and swelling following a holiday in Europe.  Knowing what I do about mast cells and my own situation I can’t help but wonder if they were involved and of course MCAD can cause awful problems with the gut.  It is not, however, going to show up on testing unless you specifically look for mast cell mediators which at the moment requires a person to go to a lab and have fresh samples done, something a severely affected M.E. patient is way too ill to do.

Merryn’s family had the brave forethought to donate her body to the M.E. Association’s Ramsey Research Fund for examination and the pathologist found brain ganglionitis (ie inflammation).  This has been found before on the post-mortem of another M.E. sufferer.  The pieces of the puzzle are consistently all there if only Doctors were properly looking for them.

My heart goes out to Merryn’s family.  I can’t imagine what the years of her illness, or the past 12 months, have been like for them.  They have been so strong in donating her body to help other sufferers and I’m just relieved that the Inquest quite rightly put Merryn’s death down to this devastating disease because if she didn’t have it she would still be alive.

 

 

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Self-medication

My Mum has spondylitis and severe osteoporosis and is often in pain with her back.  Paracetomol (Tylenol) doesn’t touch it and she refuses to take codeine as she then can’t poop, so during a particularly bad spell a couple of months ago she got some Ibuprofen from the supermarket to try and, hurrahhh, it worked wonders.

After a couple of weeks of taking just 4 tablets a day, however, she started to feel unwell and to cut a long and scary story short she ended up with stage 3 Acute Kidney Injury from the drugs, alongside fluid around her heart and on her lungs.  This innocuous medication, available from just about anywhere, nearly killed her.

We chronic illness sufferers, especially those of us with misunderstood diseases and very little health care, take all sorts to try and help our symptoms.  Vitamins, minerals, herbs and tinctures, hormones, over the counter drugs and all manner of other stuff we don’t discuss first with our GP and it worries me.

The problem is with much of this “medicine” for want of a better word is that it’s not regulated by anyone other than the people who manufacturer it and who have a vested financial interest in getting you to buy it.  Even some regulated and approved drugs, such as the Ibuprofen my Mum took, may interact with other drugs, herbs, supplements and vitamins we’re taking or may simply be contra-indicated with some of the symptoms or diseases from which we suffer.

Taking too much iron as a supplement, for example, can cause stomach pain, nausea and vomiting and if you continue the excess iron accumulates in internal organs, causing potentially fatal damage to the brain and liver.

Too much vitamin D from supplements can cause a buildup of calcium in your blood which can cause nausea and vomiting, weakness, and frequent urination.  Symptoms might progress to bone pain and kidney problems, such as the formation of calcium stones.

Too much colloidal silver can permanently turn your skin blue and St John’s Wort can decrease the efficacy of birth control pills and harm unborn babies.

In addition, no-one has any idea what effect taking Ginkgo Biloba alongside antibiotics has, for example, or mixing thyroid medication with a chondritin supplement.

Because of my Mast Cell Disease I’ve reacted to several fairly innocent supplements, including B12, GABA, Senakot tablets, heartburn tablets and even hops in a herbal tea.  If you’re taking a herb, vitamin, mineral or supplement to try and help a medical problem you’re hoping it will have an effect on your symptoms but you have no clue what else in your body could be affected along the way.

The rapid fall into life-threatening ill health suffered by my Mum from a simple over-the-counter pain killer was staggering and it’s certainly taught my family a lesson in checking with our GP first before taking anything new.

 

 

Mild Cognitive Impairment

This post is off topic to my own health issues, but is something I’m currently dealing with with my step-Dad and being as though we all have parents it might be something some of you are also facing or will face in the future.

I’m going to start by saying I am utterly convinced my step-Dad has a learning disability of some kind, though as a child in the 1950s of course this was never investigated.  He was just labelled as “stupid” and shouted at a lot 😦  The reason I say this is:

  • He ties his shoe laces in a very bizarre fashion.
  • His handwriting and spelling are appalling.
  • His logical thinking is even worse.  For example the light bulb blew on the landing one day and off he toddled up the stairs with a new bulb and an axe in his hand.  When asked what he needed the axe for he said “if the bulb is hard to get out I’m going to give it a bit of tap” not understanding that hitting a glass bulb with an axe is going to break it into smithereens.  Another example is that we were having a new dishwasher fitted and needed a 3″ hole putting in the external wall of the house for the waste pipe, which my Dad thought he could achieve using a hammer and a dinner fork :-/
  • He is hopeless at sequencing and couldn’t put together a piece of flatpack furniture, or follow a recipe, if his life depended on it.
  • He’s never been able to repeat back a tale correctly, so much so that we’ve never been able to rely on him to accurately tell us anything which has at times made life hugely difficult and is the reason I insist in going to all his medical appointments with him even though he hates me being there.
  • He is very emotional and can cry at the drop of a hat, and lose his temper at the drop of a hat.

Having said all that, he is by no means thick and for some things has above average intelligence.  His memory has always been superb, I think because he’s always had difficulties with reading so has developed his memory skills to compensate.  He is also excellent at maths and can do mental arithmetic better than anyone I know.  I feel immensely sad that he has never been assessed for his learning difficulty because I think it would have done heaps for his self esteem to know that the issues he’s faced all his life haven’t been down to lack of intellect, but rather a brain disorder he could do nothing about.

The reason I tell you all this is to set the scene for the difficulties we faced in realizing he was starting with cognitive problems in his mid seventies.  Because some his behaviour has always been a bit strange, his ability to rely information dodgy and his reasoning ability off, when he first started with cognitive issues we didn’t even notice.  It was only when his once superb memory began to be affected that a huge red flag was waved.

One Mothering Sunday I was taking my parents out for lunch to a Hotel in the town where they live and my Dad, who was driving, couldn’t remember how to get there in the car.  He used to drive for a living and has always been excellent at directions, so to say this came as a shock to us all is an understatement.  He then started forgetting acquaintances names when he was telling us who he’d bumped into while out for a walk and struggled to recall the names of actors in tv shows, which used to be his speciality.

My Mum then started to express concerns about his driving, saying that he’d driven through red traffic lights without evening noticing them.  He was very easily distracted and didn’t seem able to carry on a conversation and drive safely at the same time.

He’s always been someone who likes routine, but now when his routine is disrupted he becomes tetchy and agitated and he simply can’t cope with two things happening at once.  He has developed rituals which take ages to perform, for example at 7pm on Friday nights he goes out to play darts but has to start getting reading at 5pm.  Quite what he does for 2 hours is anyone’s guess, because all he needs to do is change his clothes, collect his darts and money and put his coat and shoes on, but he faffs on for ages and if something happens to break his ritual he gets really stressed.

After about 18 months of memory decline he also became very tired all the time.  He could sleep for ten hours a night then get up, have breakfast and nod back off on the couch at 9am.  This was so unlike my usually active and full of life Dad that Mum and I decided he needed to see the GP.  However, we didn’t want to worry him so being as though he was also having trouble with his water works I made an appointment with this as the excuse, but beforehand I wrote to his doctor outlining why we were really there but telling her not to mention the “dementia” word as we were hugely worried that my Dad might become anxious and depressed if he thought that was on the cards.  She was excellent, initially talking about his tiredness and urine issues then going on to subtly ask him about his memory and any other problems he might be having.  My Dad, though, is a person who will never admit to being ill and told the GP that he had no other problems other than weeing in the night – thank God I’d filled her in on his memory problems otherwise she would have been totally in the dark and his symptoms not investigated.

The Doctor referred him to the local Memory Clinic and within three months he’d had an extensive assessment carried out in his home by a lovely specialist nurse.  This involved lots of written and verbal tests and, to our absolute astonishment, he passed with flying colours.  Seriously, he did superbly – my Mum and I mentally took the test alongside him and he outperformed the pair of us!  How could he be having such issues in day to day life yet perform so brilliantly when tested for cognitive deficiencies?!  He was also told he would have to re-take his driving test, which again his passed no problem, and his brain MRI scan came up totally normal.  In one way this was fab but in another it was hugely frustrating – his family knew he was having difficulties but for the most part they simply weren’t being born out on the tests.  Having said all that they did pick up on the fact that he used inappropriate language in converstion, had some issues with spatial tasks and his memory problems were apprent in taks involving verbal recall.

He was diagnosed as having something called Mild Cognitive Impairment (MCI) which means he has more cognitive problems than a healthy person of his age but they aren’t serious enough to be classed as dementia.  He has to be re-assessed every 6 months though because a percentage of people with MCI will go on to develop some form of dementia over time.

My step-Dad is now 78 and over the last year his memory has worsened, though not worryingly so.  He has started a new behaviour, though, which I could find nothing about online.  He whispers to himself constantly, but he knows he’s doing it and only does it when he’s alone.  It’s common in Alzheimer’s for people to talk to themselves in mirrors or to hallucinate and talk to imaginary people, but they don’t know they’re doing it which isn’t the case for my Dad.  I also know healthy people talk to themselves, living alone I certainly do, but it’s in a normal voice or I talk to the dog like he’s human.  My Dad’s behaviour is completely different – a whispered mumbling steady stream of chatter the second he leaves the room.  I caught him yesterday putting his shoes on, whispering away to himself at a hundred miles an hour yet when he realized I was there he stopped immediately.  I have no clue what this is all about though have mentioned it to the Memory Team.

He’s also now making information up.  For example, he’ll talk to his sister on the phone, often on the loud speaker so my Mum hears the conversation which is how we know he fabricates.  When I arrive he’ll tell me his sister has phoned then go on to tell me some of the facts of the conversation and some stuff he randomly just makes up.  We have no idea why he does this.  When you’re having a conversation with him he seems totally engaged and appears to have followed the topic fine but my Mum and I know he hasn’t, because if you stop the conversation mid way through and ask him to repeat what has just been said he can’t.  He makes an excuse that he didn’t hear or catch what was said but that’s not the issue – I’m not really sure what the issue is, but it’s not his hearing which is regularly checked and is OK.

My Mum has zero patience with him and gets really irate when he can’t do things or tells her information which is wrong, but my poor Dad can’t help his brain being ill any more than she can help her heart and lungs being ill.  It must be so frightening to feel isolated from conversation and to live in a world which often doesn’t make sense and he needs a structured, calm, supportive environment not her winding him up and making him even more stressed.  She should be encouraging him to develop routines if that’s what helps him cope and not demanding things of him which he clearly can’t do, such as cooking or keeping track of finances.

Some people with MCI don’t deteriorate over time but I’m fairly sure my Dad will go on to be diagnosed with full blown dementia.  In fact, when I talk about him I always say he has dementia because I know he does – the fact this isn’t currently born out by official testing is irrelevant.  It’s obvious to those close to him that his behaviour isn’t normal and he struggles hugely with some aspects of daily living, though he’s learned over time to cover this up and often does a good job, you’d only know there’s a problem if you know him well.

 

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 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……….

 

 

The “demanding” patient

My blog is followed by various medical professionals and when I posted my Blood Test Results this morning I received a pompous reply from a GP telling me the post was inflammatory, being a “demanding” patient gets people nowhere and I didn’t have a clue what I was talking about.  Not one to shy away from criticism I thought I’d post a reply.

1. I’m sick y’know

Possibly this GP doesn’t realize the monumental effort it takes for someone with M.E. and a brain injury, who suffers from dyslexia, to write an entire blog post.  Seriously, I am fucked for hours afterwards.  The fact I now feel the need to write a second post in the same day is going to make me feel shit until tomorrow.  That all my efforts to share my experience in the hopes of helping other people in the same boat as me is met with such lack of understanding is hugely saddening.

I am not inciting other people to act.  I’m simply sharing my thoughts and experiences.  If anyone else finds my experience helpful brilliant.  If not feel free to jog on.

2. Doctor knows best

Until he/she doesn’t.  I was born with Ehlers-Danlos Syndrome.  My hypermobilty had been commented on by dozens of medical experts over the years, all of whom didn’t bother to examine me further or tie together my myriad symptoms, despite the fact they were all huge red flags for hEDS.

My own GP had never heard of the condition, and the Consultant Immunologist who I’d been seeing for over two decades with my M.E. put my widespread pain down to my hypermobility then didn’t bother to investigate the issue further, despite the fact I’d had spinal surgery for a disease rare in children but indicated in hypermobility syndromes.

If I’d left it up to any of the medical professionals I’ve seen over my lifetime I would never have been diagnosed with EDS.  On averge it takes an EDS patient a decade to be diagnosed and for me it took 42 years.   Even then I had to diagnose myself and persuade my GP to refer me to an EDS specialist.  This is due to lack of knowledge amongst GPs in particular and the medical profession in general.  Which isn’t my fault or something I should be blamed for.

When I started passing out after every meal the Gastroenterologist I saw said it was IBS.  FFS!  Because none of his standard, routine tests showed anything I was dismissed from his clinic with some Buscopan.

I have had to become my own expert patient.  I’m sorry the GP who commented thinks that patients know bugger all about their own bodies, tests and diseases but the truth is they often know more than most all of the doctors they see especially when their disease is rare.  If I hadn’t researched mast cell disease and asked my GP for a referral to Dr Seneviratne I might now be dead, because far from having IBS I was having anaphylaxis.

My GP clearly admits she knows zero about my rare diseases, so when she’s not worried about test results which may indicate kidney disease that doesn’t mean I shouldn’t be worried, because I know that mast cell disease can affect the kidneys as outlined in Dr Afrin (world expert on MCD)’s book.  So maybe in a healthy person my results are nothing to be concerned about, but when you bear in mind my pre-disposing factors it’s something which warrants further investigation.  My GP, unaware that MCAD might predispose me to kidney disease, doesn’t know this information so I do need to point it out and ask for further investigation because she’s not going to offer.

If being informed about my own health when my doctors clearly are not, and continuing to seek answers to my non-standard symptoms and test results makes me “demanding” then I guess I’m guilty.  But at least I’m diagnosed which I wouldn’t have been if I hadn’t firmly pursued my symptoms regardless of the fact that my GP wasn’t concerned.

3. Experiences differ between people

I’m sure the experience of the NHS from the point of view of a busy GP is wildly different to that of his or her patients.

I was bedridden with M.E. for nearly a decade.  During that time I lost my hair, speech, ability to eat solid food, had seizures, my hands and feet turned in and I was in extreme pain (to name but a few of my symptoms).  But test results didn’t show anything so I was left, alone, to just get on with it.  I nearly died.

The experiences of the medical profession I had during those 10 years are so horrendous they have left me traumatized and almost phobic about seeing a doctor.  I was neglected, stigmatized, suffered outright hostility, blamed for my own disease, blamed for the fact I didn’t recover, disbelieved and lied about.  This and my experiences of having hEDS and MCAD have hugely coloured my view of the NHS and the people who work therein.  Some of whom are fabulous, wonderful, kind, caring human beings.  And some of whom absolutely are not.  I do hope the GP who commented on my post has watched ‘Unrest’, the docu-film on M.E.  Maybe then he’d understand more my lack of faith in doctors and believing they know more than me about my body.

4.  The drugs don’t work

According to this GP the Spatone I’ve been taking is next to useless, which is a surprise being as though it’s recommended by Midwives all over Britain to pregnant women who can’t tolerate regular iron supplements.  Maybe my ferritin levels have increased from 18 to 46 by magic!  Or maybe it’s the Spatone, cos I certainly can’t eat enough beans to have made such a huge difference baring in mind I feel nauseous much of the time.

I’m now off to collapse in my bed to recover from this bloody nonsense.