The Holy Grail

I have had a big day.  BIG.  Huge.  If you’ve never seen the film ‘Pretty Woman’ you won’t get the reference, but trust me when I say today may have been a game changer.

The Holy Grail for anyone suffering from Histamine intolerance (HIT), and people with Mast Cell Disease who find it necessary to follow a low histamine diet, is the ability to test the food we eat for histamine.  The reason it’s so vital is that many factors affect histamine formation, the main ones being how old a food is and how it’s been stored.   A lab testing the histamine content of imported strawberries that have spent weeks travelling from Israel, for example, may come up with a very different result than if they’d tested strawberries taken straight off a bush in their garden.  And how do we know if a specific strain of British strawberries have the same histamine content as a specific strain of Spanish strawberries?  The answer is, we don’t.  Realistically the only way to test the amount of histamine in the food we eat is to actually test the food we eat, and my food here in the UK will be different to the food you might be eating in the States, Europe, Australia, Asia or anywhere else on the planet.

In October 2018 I wrote this post about researchers at City University of Hong Kong who were developing a way of testing for histamine using your mobile phone and a sensor.  Well, today I had the joy and privilege of meeting one of the researchers, Victor Lau, while he was on a short trip to the UK.  I have been excited all week waiting to meet Victor and was not disappointed.  He was absolutely lovely and has given me permission to talk about our meeting and the home histamine testing device.

Hong Kong practically lives on fish and seafood but food standards aren’t as good as they might be, so since 2016 the researchers have been working on a way to test for histamine in seafood for use in the commercial food industry.  The research is Government funded so not driven by profit.  Until I emailed them back in October they had never heard of Histamine Intolerance or Mast Cell Diseases and are now hugely interested in our plight.  Victor made a point of telling me that it’s not through any desire to make money out of us – they genuinely love the idea of helping patients and when the device becomes available to buy they will keep the cost as low as they possibly can.

I have to stress that the current device is a prototype and still being refined.   There’s a long way to go to reach a saleable product, not least because the results have to be rigorously accurate if you’re dealing with sick people and allergic reactions and then the device would need the relevant Governmental approval, however I’m assured that we’re only talking 3-4 months before a working prototype would be available for me to test 😮

The equipment needed for the current testing system is as follows:

  • An app for your phone.  They gave me the app and it was a doddle to install on my Android phone.
  • The testing device, which is about half the size of a mobile phone.
  • Some testing strips – these slot into the side of the testing device and you place your food sample on the strip.
  • Some food to test, preferably something which can be formed into a liquid when mixed with water.
  • Some distilled water.
  • Some weighing scales able to measure in individual grams.
  • A dropper.

Here’s a picture of today’s set-up:


This is how the testing currently works:

  • Place a sterile pot on the weighing scales.
  • Measure out 1gram of food into the pot.
  • Add the same amount of distilled water.
  • Mix together until you have a liquid thin enough to pass through a dropper.
  • Open the app on your phone – it gives you guided instructions as to how to conduct the test.
  • Using a dropper, place 2 drops of the food mixture onto the end of the testing strip (that’s the small orange-coloured strip sticking out of the right side of the device in the middle left of the picture).  Wait 2 minutes for this to be measured and registered.  Wipe off.
  • Add 2 drops of distilled water onto the testing strip to re-calibrate.
  • Repeat another 4 times, alternating food and water.
  • An average histamine content will be calculated from these 5 samples.
  • At least, I’m hoping I’ve got the technique correct – I’m no scientist and it was all new to me!  I’ll show the guys this post and they can correct me if I’ve got something wrong.

Victor about to weigh tea!

The process is a little time consuming, taking about 10 minutes per food item, but it’s really easy to do.  Currently it’s not something you’d be able to do in a restaurant, but I don’t care so long as I can test the food I eat at home!  Speaking of which, Victor asked me to take some food samples along to be tested.  They’d never tried the device on anything other than seafood, so were as excited to see the results as I was!  However, the device is currently only calibrated to test for histamine above 100ppm (parts per million), which is a safe level for healthy people but of course not for those of us who have to follow a low histamine diet – we need to be able to test for 20ppm at the very least and Roy Vellaisamy, Victor’s colleague in Hong Kong who I spoke to today on the phone, assures me this should be possible.  So bear in mind today we could only say if a food was below 100ppm or above 100ppm but not give a precise figure.

I miss tomatoes sooooooo much, so the first food tested was tinned, chopped tomatoes from Tesco.  They tested above 100ppm so there’s no way you could include them in a low histamine diet 😦  However, I’d also taken with me a fresh tomato and this tested below 100ppm!  We’ve no idea, though, how much below – it could be 10ppm or 99ppm so tomatoes are still not a food I’ll be eating until I know for sure how much histamine they contain.  Interestingly, Victor re-tested the fresh tomato a couple of hours after I left, which by this time had been out of the fridge and in a warm environment for several hours.  It now tested above 100ppm, which on the surface looks as if histamine had formed rapidly in the warm environment in which Victor was testing.  However, it may not be quite that cut and dried.  We only know it initially tested below 100ppm, but we don’t know by how much – it could actually have been 99ppm.  And in the second test, we only know it tested above 100ppm, but again we don’t know by how much – it could just be 101ppm.  Of course, on the other hand it could be that it tested as low as 30ppm on the initial test, but after being kept at room temperature for several hours it had reached histamine levels of 190ppm!  The ability to test precise levels of histamine in a food sample is something which would be vital to us if the device were to be useful to us as a patient population.

The next food I wanted to test was a good old British brew (well, actually, my tea was organic black Clipper tea from some far off land 😉 ).  I was gutted when this tested above 100ppm (and that’s without adding milk) but I have to be honest and say I still don’t think I can give my daily cuppa up.  Histamine is a bucket effect, and as long as my bucket is low from eating foods low in histamine the odd cup of tea shouldn’t fill the bucket too much and tip me over the edge and into a reaction.  That’s my excuse anyhow and I’m sticking to it 😉

By this time my train home was almost due, so I had to leave my other samples with Victor to test in my absence.  I’d taken some Quorn mince and some cocoa powder, so I’ll let you know the results when I have them.

Today has felt like a watershed day for those of us with HIT and/or MCAD.  I can’t stress enough how interested both Roy and Victor are in our situation, how generous and lovely they are being with me and how much they genuinely want to help.  It certainly makes a change from the usual way we rare disease patients are treated.  I told Victor that HIT seems to be much more recognized in Germany than here in the UK, and he luckily has a close colleague who lives in Germany whom he can find out more from.   For my part, I gave him Dr Seneviratne’s details being as though he’s the leading HIT & MCAD doctor in the UK and is so knowledgeable on all things histamine.

Victor stressed that they want to make a device which is useful to us, so if any of you have any questions please do comment below this post and I’ll forward them all.  I have every faith that, with a bit of tweaking, the device could be brilliant for us – the ability for you to be able to test the food you eat, and for me to be able to test the food I eat, would be awesome and something I didn’t even dream would be possible.  Not only that, but Victor thought it wouldn’t be too difficult to develop the device to test for things other than histamine – nuts, for example, or gluten!  All that would be needed is a separate testing strip whose receptors bind to gluten instead of histamine – the rest of the testing kit, ie the app and device, would remain the same.  Imagine the possibilities in our modern world where food allergies are rampant!

Watch this very exciting space 🙂

 

 

 

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Turf Wars

My house in on the end of a little terrace, with a drive running alongside.  Behind me is a bungalow lived in by my ‘nice’ neighbours who have a right of way Easement over my drive to get to their house and garage.  Behind them is my garage.  Right opposite my garage is a Commercial Unit, currently leased by Mr X from which he runs a furniture business.  He also has a right of way Easement over my drive to get to his Unit.  I own the drive from the main road to the end of my garage, but the top little bit of the drive is owned by Mr X, who parks his work’s van there during business hours.  Fine so far.

I’d never had any bother with the shared driveway until Mr X moved in three years ago.  He persistently kept parking his van outside the door of his Unit, which also happens to be right outside my garage, meaning that I couldn’t get my car either in or out – this despite the fact that he owns the top part of the drive and if only he pulled 3 feet further forward he wouldn’t block my garage.  I was polite and kept asking him not to and he just smirked at me and continued to park.

As the months went by the customers using his business also started pulling in to my drive and parking right outside the door of the Unit, ie right outside my garage and blocking it.  I politely kept asking them to move and was usually met with “I’m just seeing Mr X about my chair, I won’t be a minute!” or “I’m just offloading a chest, I won’t be a minute!” or “I’m just picking some material, can’t you wait!” and then I’d have to sit there and sit there til they’d finished.   As time wore on I got more and more cheesed off.

Not only did Mr X’s customers park on my drive, so did his staff.  Every time I wanted in or out of my garage I’d have to go into the Unit and ask them to move.  I was met with increasing hostility from one staff member who used to bark at me to “bloody wait!”.   I was even called a bitch on one occasion.

The first summer he had the Unit, he and his staff pulled a table outside onto my drive and proceeded to eat their lunch around it.  I had a doctor’s appointment and needed my car out of the garage, so asked them politely to move.  “We’re having our dinner, you’ll have to bloody wait!” barked the hostile staff member.  So I asked her if she’d like to ring my doctor and explain I’ll be late for my appointment because I have to wait until they’d finished their butties.  FFS.

Last spring I had my big appointment through at Newcastle regarding my severe endometriosis and adenomyosis and the fact I needed a hysterectomy, even though this might be life-threatening due to my MCAD.  I was travelling the 180 miles alone to the appointment to see a team of specialists including an allergy-anaethetist, the gynaecologist, a specialist nurse and a specialist immunologist, was stressed and worried, came out of my house………..and was blocked in.  I went into the Unit, asked the customer to move his car and was met with a torrent of abuse by the staff member.  I drove the first 17 miles to the hospital crying my eyes out.

I complained about the incident to Mr X, sobbing as I did so.  My Mum was also just recovering from a heart attack and my Dad had just been diagnosed with dementia.  I was menopausal, ill and utterly exhausted.  He promised to have a word with her and her abuse stopped, but the customer parking did not and he continued to do nothing to stop his customers, sometimes several every day, blocking me in.

I resorted to putting up “no parking” signs at the entrance and the top of my drive.  It did no good.  The customers, visitors and delivery vans just ignored them.

Last November I came home one pitch-black winter’s afternoon, reversed up my drive and went smash into a car illegally parked outside my garage.  It was his ex-wife dropping off his son.  It cost me £250 in excess, 2 months of wrangling with the insurance company who didn’t want to pay for the repairs, my insurance premium has now doubled and to be fair it really wasn’t my fault as she should never have been there.

This situation has been ongoing for 3 years now and Mr X’s customers are still parking in my drive.  All it would take to remedy the situation is for him to park his van in a lay-by on the road opposite the entrance to the drive, literally 15 feet away, so one customer at a time could park at the top of the drive on his land to load/offload or do whatever the hell it is they need to.  But he refuses.  He thinks he has every right to run his business any way he sees fit, and if that means parking on my drive so be it.

The thing is, the house deeds explain the terms of the Easement which is a right to “pass and repass along the drive”.  There is zero right to park or even stop on it, let alone obstruct the drive so that I can’t use it.

Things came to a head this week.  It’s clear to me that Mr X’s customers think the drive belongs to him, so I’ve bought a new sign which reads “Private drive to my home.  No furniture business vehicles”.  He didn’t like that one little bit, came round to my house and demanded I remove it.  I asked if he was going to stop his customers, current wives, ex-wives, visitors and delivery vehicles from parking on my drive and he said “no!  They have a right to offload stuff and I have a right to deliveries for my business”, which actually he doesn’t……..not on my drive at any rate.  So I said in that case I wasn’t removing the sign, so he’s now told me I’ll be hearing from his solicitor.  Brilliant!  I’m completely in the right and hopefully if it goes to court it will be settled in my favour once and for all by way of an injunction banning him, his customers, visitors, ex-wives, current-wives, Tom, Dick & Harry from parking on my land.

The thing that has upset me more than anything, however, is that my ‘nice’ neighbours are on his side 😦  They think I’m being unreasonable as he has a business to run, depsite the fact they too are sometimes blocked in their own garage (though nowhere near as often as me) and customers driving past their bunalow have smashed plant pots they own outside their front door!  Why can’t they see that he should never have agreed to take on the lease of a Unit which has no offloading facilities when these are absolutely vital to his business?!  It’s not my sodding fault there is nowhere for his customers to park.  The fact I’ve been verbally abused to the point of tears doesn’t seem to bother my ‘nice’ neighbours in the slightest, or the fact I have M.E. and by the time I’ve been out and come back home I’m so ill and exhausted that I barely have the energy to walk the 10 feet from my garage to my back door, let alone having to go through the stress and rigmarole of first finding the illegal parkers, asking them to move, sometimes suffering verbal abuse in the process, waiting for them to finish what they’re doing, backing my car up so they can get out, and only then am I able to park in my garage and go home.  Their lack of loyalty towards me is incredibly hurtful and is much, much worse than the arsehole behaviour of Mr X.

Luckily for me I have legal expense cover on my home contents insurance and am now at the stage where if he doesn’t proceed with court action I will – the only reason I haven’t done it before now is that I’d have to declare there’s been a problem with the Easement if I came to sell my house, which I’m trying to do as I want to move (due in no small part to Mr goddamn X).  In the meantime I’ve bought a little CCTV camera to record the goings on as my solicitor says I need to keep a record of the times my garage is obstructed. And all because one vile man is so lazy he won’t park his van 15 feet away in a lay-by in a quiet village, thereby allowing his customers to park on his land instead of mine.  Honestly, some fucking people!

One In A Million

Overnight my blog received its 1 millionth visitor.  It’s gobsmacking to me.  Seriously gobsmacking.  Here I am in the middle of nowhere, surrounded by sheep and farmers, spending 17 hours of every day in bed feeling like road kill and over a million people have read something I’ve written, including someone from Vatican City and one of the world’s leading MCAD doctors.  Mind-seriously-blown.

I started my blog because I felt like I was the only person in the world to be diagnosed with not only M.E., but also hEDS, HIT and MCAD.  I had no clue there were thousands of other disease-triad sufferers out there and finding you all has helped me feel less alone.  And there have been many times that I have felt utterly, utterly alone not least because I’ve lived on my own since I developed ME back in 1994 and have never had anyone to care for me no matter how sick I’ve ever been.

My blog has always been a bit like an online diary – a place where I could offload because in real life I had no-one to offload to.   I include information on my diseases I’ve found along the way which I hope you’ve all found useful, but in essence my blog is written for me.  The fact that anyone ever bothers to read about my shitty life and my even shittier illnesses is simply the icing on the cake 🙂

I know I’m not everyone’s cup of tea.  I loathe when people come on my blog and tell me I should be doing this, or I should be doing that – unless you have access to my medical records and are menopausal, 51, have M.E., HIT, MCAD, hEDS, Endometriosis, Adenomyosis, Polycystic ovaries and severe migraine disorder for over a quarter of a century you and I are not the same and you have no clue what I should, or should not, be taking, eating or doing.  So I know I get tetchy with some of my visitors but that’s because they’re giving me advice that I absolutely did not ask for.

It’s also been levelled at me that I don’t like anyone to disagree with me.  Quite correct.  It’s like reading someone’s diary and disagreeing with their thoughts because they’re not the thoughts that you have.  I can think and feel any fucking way I like and just because it’s not how someone else might think and feel doesn’t make it wrong.  I wish more people got that and gave each other space to express their own unique and individual opinions and thoughts without feeling the need to constantly challenge them with a “yes, but……”.  These days, if someone writes a comment that starts off evenly remotely negative I simply don’t read it.

My blog has evolved just as I have evolved.  My knowledge has changed and grown over time and I think differently about many things in 2019 than I did back in 2013 when I was newly diagnosed.  I don’t pretend to know everything about everything.  I know enough to manage my diseases and that’s all.  Having said that, I’ve survived meningitis, cheated death twice, got back on my feet after being bedridden for a decade, fought for my hEDS and MCAD diagnoses when they were relatively unknown illnesses, survived countless anaphylaxis attacks and am fit enough to do a hobby I love, to live independently and to occasionally walk my lovely little dog – and all without any knowledge of genetic mutations and methylation cycles not to mention eating gluten, sugar and dairy every day of my life alongside Pringles, Starburst and a few gallons of tea 😉   However incorrectly some people think I’m living my life I’m obviously doing something right, for me at any rate.

Blogging so openly and publicly about your life is not for the faint hearted.  You make yourself vulnerable to spammers, stalkers, weirdos, the angry, the depressed, the dismissive, the judgemental, the just plain nosey and the downright bloody rude.  But in return you also open your life to friendship, support, knowledge, encouragement, understanding and laughter – and it’s that which keeps me going 🙂

Thanks to you all for caring about me and my struggle.  For sharing in my journey and for sharing yours with me.  You’re one in a million and I am thankful for you.

Weekly roundup

By next weekend I’m hoping to have some BIG news to share with you!  I’m really excited, so keep an eye on your inbox at the end of this coming week.

Monday my cough was so bad I had to ring my doctor.  She palmed me off onto the nurse practitioner who is about as much use as a chocolate fireguard.  My chest is clear, as I knew it would be because I’m not coughing anything up.  My breathing test was over 500 – it was excellent even when I had pneumonia, because I have hEDS and my lungs are super stretchy.  When you have hEDS doctors absolutely shouldn’t rely on this test as a sign of how healthy your lungs are!  So in her own words the nurse practitioner told me “I don’t know what to do with you”.  Super.   She then started asking me about my MCAD, HIT and hEDS.  Er, why?!  She then wanted to refer me to a fucking dietician, like that would help my cough.  I did point out I’d been diagnosed with HIT for over 5 years now and was managing fine thank you very much, and in any event no dietician in Cumbria is going to have even heard of Histamine Intolerance and I would be teaching them about the disease!  She then wanted to refer me back to Dr Seneviratne……….for a cough!!  Jaysus.  So I explained to her that I’m fairly sure my cough is down to reflux and to give me a prescription for an H2 blocker, Famotidine.  I became allergic to it a couple of years ago but now I’ve had a break my mast cells might tolerate it for a week or three until my cough settles.  She gave me the prescription and just about shoved me out the door.   Thankfully my mast cells are so far accepting the drug, though to be honest my cough isn’t much better :-/

Also on Monday I’d had enough of waiting for the hospital to book my Dad in for his full body CT scan.  It’s been 7 weeks now since his lumbar puncture and he’s supposed to be under the care of the emergency neurology clinic!  So I rang the Neurologist’s secretary who said the referral had been made but no appointment yet was showing.  Apparently we just had to wait.  Funnily enough, though, only 4 hours later the scanning unit rang my Dad and offered him an appointment the next morning.  Obviously what’s happened is that the referral was made but not marked urgent, so he was placed on the regular waiting list.  It’s exhausting trying to keep on top of all this stuff, and surely to God it’s not my job to make sure someone else does their job properly :-/

Wednesday evening I was guest speaker at my Camera Club, doing a talk on Beginners Studio Photography.  It’s taken me about six months to put a 2 hour workshop together and, Sod’s Law, I felt absolutely dreadful on the day having barely slept all week due to my cough.  I started the presentation fine, but about 2 minutes in my mind went totally blank.  A big, black hole of nothingness where my thoughts should be.  I swear I couldn’t even remember my own name, let alone what the hell I was supposed to be talking about, and I stood there in front of 40 people gaping like a fish out of water.  Eeek!  An eternity passed and eventually I just started gabbling on about something (I don’t even remember what) until my brain decided to get itself back in gear.  I was mortified.

My dog Bertie has been pawing at his face since Xmas.  Initially I couldn’t see anything wrong, but now there is a definite lump there so I took him to the vets on Friday to have it checked.  My regular Vet was unavailable, so I saw a girl who still has acne and didn’t look old enough to have even qualified as a Vet.  Her diagnosis was “it could be anything from an ingrowing hair to a cancerous melanoma”.  Hmmm, Dr fucking Google told me that much!  Your job as a Vet is to say which type of lump it is, because one is a bit annoying and the other could kill him.  FFS.  She’s given him some Piriton to settle the itching and I have to go back in a week.  Why do I have to go back in a week?  He’s already had the lump for seven weeks now – is that not long enough to show it’s not going anywhere?  I have no faith in anyone these days.

I found out this week I’ve won a medal in an International Photography Salon based in the Netherlands 😀  There were 5,500 entries from across the world and only 12 medals were awarded so I’m proper chuffed.  However, they didn’t tell me which medal I’d won, ie bronze, silver or gold, or from whom, eg. the Photographic Society of America, the Federation of International Photographers etc., so I emailed to ask.  I received no reply.  I was telling a Camera Club colleague and his reply was “why does it matter which medal you got?  I have a drawer full!”  Well bully for you.  He’s been a photographer for nearly 40 years, whereas I’ve only been doing it for 5, and he’s healthy whereas I’m chronically ill.  Why are some people just so fucking mean spirited?  I’m genuinely thrilled when someone at my Club gets recognition for their skills, because I know what’s involved and all the hard work they’ve had to put in.

Y’know I wrote a post recently about wanting to go and live in a cave?  Well this is why.  All the little things which happen every day to chip away at my faith in humanity.  Doctors should know why you’ve been coughing for 2 months and if they don’t they should investigate.  Urgent appointments for progressively crippling diseases should be made urgently.  Vets should know the difference between an ingrowing hair and cancer.  And people shouldn’t be bitchy when you do well.  What the fuck is wrong with the world?

I was bored on Friday night, so decided to do some light painting photography.  It involves shutting myself in a pitch black room for hours with a torch, which I appreciate isn’t everyone’s idea of a good time but I find it fun 😉  Holding the shutter on the camera open for extended periods, you paint light with the torch onto an object, lighting tiny bits at a time.  You then stack the bits together in Photoshop, which gives a picture you couldn’t achieve in any other way.  I ended up with this photo which in the end took about 6 hours to make but I think is pretty.

Right, breakfast is calling.  As I lie in bed here typing the sun is coming up over the Pennine fells, the sky is a spectacular shade of pink and purple and the birds are chirping their hearts out.  I’ll enjoy my walk with Bert this morning 🙂

 

Dupuytrens Contracture

My Mum is one of 7 children so I have a large extended family.  I’m in contact with them all, yet out of my 17 cousins it appears I’m the only one with Ehlers-Danlos Syndrome.  I’ve clearly inherited hEDs from my Mum who, despite not being formally diagnosed, has all the symptoms though is much more mildly affected than me.  Not only that, but she also obviously has MCAD, though again less severely than I do.  However, we can find no other maternal family members with hEDS or MCAD so quite where the faulty genes originate is a mystery.

My Mum has her fair share of genetic diseases, every single one of which I’ve inherited.  Not only do we share hEDS and MCAD, we also share a Familial Essential Tremor (which appeared at the age of 50 in both of us) and Dupuytrens Contracture (which again started at the age of 50).  The menopause has a lot to answer for.

Dupuytrens (pronounced du-pwee-trens) is a collagen disease which affects the hands (and sometimes the feet).  Scar tissue forms in the palms and the connective tissue thickens and shrinks.  Dupuytrens affects 2 million people in the UK and famous sufferers include Ronald Reagan and Margaret Thatcher.  The disease hasn’t been linked to EDS specifically though to be fair no-one is researching connections with other diseases so we have no idea if it’s more common in people with pre-existing connective tissue disorders than the general population.  Dupuytrens usually starts between the ages of 40 and 60 and for a change is more common in men than women.

The disease starts with a little hard lump in the middle of the palm, usually in one hand only.  Mine feels like a large grain of rice under the skin and has begun in my left hand, as did my Mum’s.   Over time, the little lumps (nodules) start appearing in lines up to the fingers and eventually develop into string-like chords, often up to the pinky and ring finger (though in my Mum’s case her middle finger is also affected).  There’s an excellent image of dupuytrens progression here.

The scar tissue affects the ligaments which control movement of the fingers.  Eventually the affected tissue becomes so thick and short it pulls the affected finger(s) in towards the palm.  It seems incomprehensible that someone with hands as flexible as mine could end up not being able to put my palms flat on a table, wash my face or even wear a pair of gloves 😦

There is currently no way of stopping the progression of Dupuytrens Contracture.  There has been some research into using radiotherapy to slow down progression, but it’s not currently widely available.  You can also have Collagenase injections into the chords.  Collagenase is an enzyme that is produced by a bacteria called Clostridium histolyticum and the enzyme eats away at collagen causing its structure to weaken.  However it’s fairly likely that the disease will progress anyway and you may eventually need surgery, which involves cutting the chords to straighten the fingers.  There’s no way of knowing how well individuals will respond to surgery.  For some it works very well and they regain a good degree of functioning of the fingers, but in my Mum’s case it really didn’t have a huge impact and the disease returned within a year.  She’s now had 3 surgeries and still doesn’t have functioning hands.

Dupuytrens can affect one, or both, hands.  It can also develop on the soles of the feet and is called Ledderhose disease.  In men Dupuytrens can also affect the penis, called Peyronie’s disease.  Patients with Dupuytren’s sometimes also have localized firm areas beneath the skin on the finger joints. These lumps are referred to as “”knuckle pads” or “dorsal Dupuytren nodules” to distinguish them from simple callus or skin thickening over the joints.

Dupuytrens contracture is sometimes termed the Vikings Disease, on account of the fact that sufferers almost exclusively have Northern European lineage – my 23andme results show 16% Scandinavian DNA.  It is therefore an ancient disease dating back to the 700s AD and far beyond – the fact we still don’t have a way of stopping it, or even effectively treating it, amazes me.  However, there are currently various trials taking place across the globe into treatments for Dupuytrens – details can be found on the British Dupuytrens Society website.

Weekly roundup

There has been no blog post this week because I’ve had my period and felt like road kill.  Not only has Aunt Flo mowed me down she’s backed up and run over me again, just in case there was a part of my body she didn’t mangle the first time.  Bitch.

I’ve spent a couple of days installing pull out wire baskets in one of my Mum’s kitchen cupboards.  Neither parent can bend down to reach into the back of the bottom cupboards anymore, so I thought a pull out basket would be the solution.  I didn’t think through installing 32 screws in a 30cm wide cupboard but.  My drill didn’t fit as it was too big and I could barely get my arm, let alone my head, in to see what I was doing.  The plus-side to having hEDS has always been my ability to contort myself into awkward positions but as I’ve aged I’ve stiffened up and these days a corpse with rigor mortis has more flexibility.  It was a fight and the cupboard won.

Wednesday evening was our 2nd print competition of the season at Camera Club.  They’re my favourite nights and I was thrilled to wipe the board, getting joint 3rd, joint 2nd and joint 1st with my photos 🙂  My 2nd place photo is of a child bride, and was inspired after reading about the legal age of marriage for girls around the world.  Here in the UK you aren’t trusted to drive a car til you’re 17, you aren’t considered capable of knowing enough to vote til you’re 18 but you can get married and produce another human being when you’re 16 – it makes no fucking sense whatsoever.  In some states of America the legal marriage age for girls is 12 – admittedly you need the permission of a judge, but 12?!  The Koran states that girls are ready for marriage when they reach puberty, which is my case was 11 while I was still at primary school.  In Iran, the legal marriage age for girls is 9.  Needless to say, in most countries the legal age of marriage for boys is much older than it is for girls, yet sex at a young age wouldn’t physically damage them and they aren’t at risk of dying from childbirth.  The way girls are treated makes me FURIOUS.

I received not one but two invitations in the post this week!  I never get invited anywhere by anyone so it’s a real treat.  The first invitation is to a wedding……..in October.  Is it usual to send out wedding invites nearly 9 months in advance?!  The other is to a friend’s surprise 80th birthday tea at a posh hotel and the invite tells me it will cost me £20 payable on the day.  WTF?!  Who has a party and expects the guests to pay for themselves?  I wouldn’t care, but the person hosting the party is loaded.  They retired in 2004 and sold property to the value of £210,000 which they now have sitting in the bank.  I, OTOH, don’t have two beans to rub together but when I had my 50th birthday party I paid for every single thing myself – I wouldn’t have dreamt of expecting my guests to pay for my party themselves.  What are people like?!!

The past couple of weeks it’s been bitterly cold here in the UK and the hay fever which has plagued me since Christmas had disappeared, but the past few days have been milder and it’s back with a vengeance.  As I type this I am sneezing and streaming and my eyeballs are already burning.  To add insult to injury I’m also coughing my head off.  It’s reflux, and stomach acid is getting into my lungs.  I’ve had it for 2 months now and it’s seriously getting me down.  Every breath I take makes me want to cough, my throat and stomach muscles are really sore and I’m utterly exhausted.  I’m allergic to PPIs, H2 blockers and cough suppressants, so my only recourse is Gaviscon and Rennies which I’m eating like they’re Smarties.  They are not working.  In any way.  So between my wayward hormones, hacking cough, streaming nose and burning eyes I’m feeling stupdendously shit and massively sorry for myself.   If I were a dog I would have been compassionately euthanized years ago.

On that cheerful note I shall leave you.  I shall drag on my thermals and take the hound out in air heavy with allergens and despite the fact that the slightest movement makes me cough my exhausted, muzzy head off.   Some days I’m glad to be alive………today is not one of them.

Weekly roundup

I’ve had a fairly quiet week for a change and it’s been nice to relax and have some time to myself.  I had a pleasant day on Monday going up the lakes with my friend for his birthday – he was widowed 2 years ago and is still grieving for his wife, so I was happy he’d asked me out rather than moping around on his own at home.

Wednesday evening I’d agreed to do two talks at my Camera Club on various types of software.  Whenever I commit to doing something I worry myself stupid in case I’m ill on the day and have to pull out, but I was fine and it went really well, including good-hearted banter from the audience,   I was finally presented with my certificate for achieving the DPAGB back in November by an official from the Photographic Alliance of Great Britain, who also asked if I’d be guest speaker at his Camera Club in Carlisle next season which was flattering 🙂

I felt physically great at the start of the week, but rubbish by the end of it.  My brain fog today is ridiculous, every part of my body is aching and I have the energy of a zombie.  I’m currently on day 32 of my cycle so am wondering if I’m going to skip a period this time as it’s so late.  All this uncertainty, and not knowing when or if Aunt Flo is going to put in an appearance, is doing my nut in.

I spoke to the GP about my Dad.  His last B12 test twelve months ago was fine, so low B12 is clearly not the cause of his neuropathy.  She’s put him on amitriptylene for his aching leg pain and, being as though he’s also understandably a bit low, I’m hoping it will help.  She also said he most definitely should be tested for Lyme disease, so has arranged for him to have a blood test this week.  To be fair to her, she takes everything I say on board and if I request a test or referral she’s usually more than happy to agree.

I’ve had time to work on another photograph this week.  I live right next to a little village Church, which luckily is still open to the public all day.  Hardly anyone goes in the winter, so I’m able to take my camera in there and have done several photos inside.  As a teenager I seriously considered becoming a Nun but I would have been disastruous at it, on account of the fact I hate being told what to do 😉  I hope no-one is offended by my picture which I’m calling Disobedient – it was simply inspired by my story.