Weekly roundup

I do my bit for other people and hope I am both a good friend and a good daughter.  People rely on me because I’m dependable, practical, knowledgeable about ‘stuff’ and will help someone out if I feasibly can.   Because I am at home all day, they assume they can call on me whenever they need to.  They also assume I am free to go out to lunch, off on days out and generally have so much time on my hands I am sitting by the phone just waiting for them to call.  They tend to forget that I am sick and live alone with no-one to help me.  I spend a minimum of 17 hours of every day in bed so only have 7 usable hours each day in which to fit my entire life, I have severe energy restrictions and I struggle just to get dressed.

I do try to set boundaries, but enforcing them can be just as exhausting as caving in.  An elderly, sick friend is currently moving house and I have spent whole days helping him.  On top of that he goes to a cafe every Sunday morning and expects me to meet him for brunch, even though I might already have had lunch with him one day in the week.  He became so demanding this week that I had to remind him of my situation and that in the past month I’d actually spent more time with him than my own parents.  In addition, I had not had one single day to myself, where I sat in the garden with a book, for an entire YEAR.

I try to have 3 ‘holidays’ each year: Easter, my birthday in September and Christmas.  I never go anywhere as I can’t afford to plus there’s no-one to have the dog, but I am supposed to spend the time lounging around doing absolutely nothing, just like I would if I were on the beach in Greece.   It never fucking works.  I missed my Easter holiday this year because I had a virus, so I told my parents I was having a week off this week as the weather was due to be lovely.  I was so looking forward to just lying on my sunbed and snoozing for days.  It didn’t happen.

Monday I had to go into town as the battery in my watch died and Bertie’s repeat prescription needed picking up, so I called in to see my parents.  My Mum’s doorbell needing fixing (vital and couldn’t be left), a birthday present needed wrapping for their sponsor child in India (there was a deadline) and she wanted me to order some cropped trousers for her as she’d put on weight and none of her summer clothes fitted and being as though we were expecting 38C temperatures and if she’s hot her breathing gets worse I felt like I had to.

Tuesday I did manage some ‘me’ time, but it was physically demanding as it involved being down by the river to take some photos.  I was quite pleased with the results, though, as I’d wanted to capture a gull fishing for at least 3 years!

Wednesday I went to view the bungalow in the morning, then my cleaner was here in the afternoon and I have to tidy up before she arrives because the house often looks like I’ve been burgled.

Thursday I have my groceries delivered and they needed to be put away.  Then we had wicked thunder storms and torrential rain, so I was forced to lie in bed watching repeats of Escape To The Country.   Lightening hit near my parents’ house and their landline stopped working, so I had to go in and work out if it was their phone (in which case they needed a new one) or the line (in which case they needed an engineer).  It turned out the micro filter had blown so they needed a new one of those.

Friday was the only day I managed to sit in the garden, because on Saturday it peed down.  And of course every single afternoon, plus 3 mornings, I have to take Bertie out because his bladder doesn’t take a week off.  And I still have to make meals, and stack the dishwasher, and put the recycling out…………

Needless to say it hasn’t felt much like a holiday.  It never does.  I am just as knackered as I was at the start of the week and I genuinely don’t know what the answer is.

 

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Weekly roundup

I had every intention of writing a fun, informative post on some wildly exciting theme this week but life had other plans.  I’m currently contemplating redecorating my lounge and I would love a new sofa.  I bought the one I have now 15 years ago because it was practical – it’s a recliner for my orthostatic intolerance, it has high backs to support my neck and it’s dark coloured wipeable leather for the world’s muckiest dog – it’s also ugly as sin and cold to sit on.   Just for once I want a pretty sofa and have my eye on a velvet corner unit, however if I’m going to spend a massive amount of cash on a piece of furniture it has to be just right and I’m struggling to find exactly what I want.  So on Tuesday I decided to trail miles to Gateshead to the Sofa Workshop to see if they could make me one up.

However, I knew I’d get back late and be totally zonked so at 7.30am I thought I’d prepare the veg for my dinner so it was ready to come home to.  Big mistake.  Huge.  No-one should be in charge of sharp objects when they haven’t eaten breakfast yet and are still half asleep.  You know what’s coming.  Yes, my friends, the knife slipped and I tried to chop my thumb off.  Ouch!  (only I didn’t say that – I said words that began with F and B 😉 ).  There was blood everywhere and I nearly fainted because I hadn’t eaten for 13 hours, however I finally got my hand wrapped in a damp dishcloth, managed to make and eat breakfast and get dressed, waited for my dog walker to arrive so that she could have the mutt and drove the 7 miles to A&E one handed where I ended up having 6 steri strips put on.  As I have hEDS and my skin gapes like a fish when it’s cut I thought I might need stitches and to be fair looking at it 6 days on I think I should have had stiches because it hasn’t knitted together well and the wound is all lumpy, but it is what it is.    Taking the steri strips off yesterday was a sod, as I had to rip the caked on bloody scabs off too – yowza.

So all the things I had planned for this week went out the window as life one handed is tricky.  Having said all that, later that morning I still drove all the way to Gateshead,  light headed and with my hand on fire, to look at sofas and was gutted when even they didn’t have what I was looking for!

As if all that weren’t enough, I was out with Bertie for his afternoon jollies on Friday when all of a sudden he sat down and started licking his back end.  When he stood up again his lovely tail, which proudly curles over his back, was limp and hanging like a dead weight and he was obviously in pain and refusing to move.   He already has a severely herniated disc right at the base of his back/top of his tail so any problem involving his back end makes me panic!   His legs seemed fine though, so I wondered if he’d been stung by a bee or something.  I managed to get him home and gave him some paracetomol but it didn’t help and he was in so much pain he couldn’t sit, stand or lie, so we ended up at the vets who was as flummoxed as I was.  She gave him some Tramadol and said to see how he was the next morning, but even the Tramadol didn’t stop the pain and by 6pm he was still unable to sit or lie down.  So I rang the vet back and we added 200mg of Gabapentin (he’s already on a low dose of Gabapentin for his spinal problem).  That did the trick and he finally managed to get some sleep.  Thankfully on Saturday morning he could move his tail, if not curl it, and the pain was much improved so I’m now wondering if it was a bite from a horse fly into the joint – they’re evil little fuckers and having been bitten by one myself I can safely say it’s agony.

So my week has been a bit draining, both physically and emotionally.  I love my dog so much the thought of anything happening to him turns my insides to ice.

There has been good news too though, yet again from my photography.  Each year, our regionial wildlife charity puts together a Calendar to raise funds and I have had this image of Swans chosen for the February entry 🙂  The other exciting thing to happen this week is that I bought a gorgeous red and gold hooped gown in a flash sale to use for a photo, so look out for the resulting image in next week’s roundup.

 

Home Histamine Testing News!

As my regular readers will know, a dedicated team in Hong Kong are working on a small device which will allow members of the public to test food in their own home for histamine.   It’s the Holy Grail for us, as the only way to know how much histamine is in the food we eat is to test the food we eat!

The testing device is now in fairly advanced stages of research although isn’t on the market yet.  The team have promised to send me the device to test in the next month or so when the final prototype is ready.  I’m sooooo excited about that I can’t even tell you and am eager to start testing foods and sharing the results with you all.

I heard from Roy this morning with some fabulous news.   The team had submitted their sensor to the 47th International Exhibition of Inventions in Geneva and I am thrilled to announce they have won gold 🙂  GOLD!  Isn’t that brilliant?!  The exhibition is regarded as the world’s most important event exclusively dedicated to inventions and involved more than 700 exhibitors from 45 countries.  Inventions are presented by companies, universities, private and State Institutes and organizations, and there are more than 30,000 visitors from five continents alongside 650 journalists from both the written and spoken press and television from throughout the world.   It’s a massive achievement.   Huge congratulations to all involved and I’m delighted the team have been awarded the recognition they deserve.

Weekly roundup

I have had a horrendous few days.  The depths to which people can be vicious and vindictive shocks me, especially when they are grown adults.  I have alternated all week between being  angrily defiant to being a weepy, crumbling wreck – I am too ill for this crap which is wholeheartedly undeserved.  I wrote about the situation in my last post so I won’t harp on.

As if being slandered and publicly humiliated weren’t bad enough, I have had one of the worst colds in years this week.  It started with an 8 day migraine, then came razor blades every time I swallowed and three days later the sneezing, streaming and coughing began and to add insult to injury I still have a banging head.  Due to that, and the almost unbearable stress of recent events at my Camera Club, I have barely eaten or slept for days.  The Pheasant splattered by a car on the road outside my house feels better than me today.

I have felt so poorly I have done nothing and seen no-one.  I speak like Donald Duck, cough like a 40-a-day chain smoker and you can image what massive stress + a virus has done for my M.E.   Consequently I really don’t have much to tell you.

The only bright light on the horizon is the news that I won another photography medal this week at an international Salon.  Silver, for my new picture called ‘On the shelf‘.  My friend told me she now has congratulations fatigue.  Another medal?  Yeah, whatever……. 😀

Weekly roundup

This week has been physically tough.  My period arrived (I swear I’ll still need sanitary products when I’m dead cos Aunto Flo is showing zero signs of buggering off!) and I am currently on day 7 of a migraine.  My knees and elbows are having a pain flare for reasons unknown and I’m still so brain fogged/exhausted I feel like I’m drugged.  But other than that I’m good 😉

On Monday I took my Mum through to the city to visit the hearing aid clinic at the Hospital.  She wears two hearing aids but they simply won’t stay in her ears and she’s already lost one which dropped out as she went round the supermarket.  It turns out she has very narrow ear canals and even the smallest aid is too big, so they’re custom making her ones which sit inside the ear itself instead.  As my Mum rarely gets out of the house we made a day of it, having our lunch out and a tootle round Matalan as it’s all on the flat for the wheelchair and has a good sized disabled changing room.

The rest of the week I’ve been trying to organize repairs to my car port, the back of which is made of old wood which has totally disintegrated.  All was going fine until we discovered asbestos and then it was on to plan b!  When you have M.E. you barely have the energy to get dressed let alone for events to go belly up.  So now the job is much more complicated than I expected and will take twice as long – of course it will, because Mr Sod has it in for me.

As I wrote about in this post my Dad and I made a last minute trip to the Hospital in Newcastle on Friday.  I was expecting them to finally say his neuropathy was idiopathic (ie no explanation could be found) and to tell him he just has to learn to live with it, however they’ve said that idiopathic neuropathy isn’t usually progressive and severe like my Dad’s so they are still searching for a cause, which is great news but means yet more 180 mile trips to the Hospital for tests and appointments which nearly kills me and takes a week to get over.

Yesterday I found out I’d won two more trophies for my photography in an annual competition which involves all 52 camera clubs across the north of England 🙂  I genuinely wasn’t expecting them so am tickled pink.  However, my joy was momentarily marred by the news that a smear campaign has now been started against me by the bullies at my Camera Club who are saying I’m writing shit about my Club on Facebook.  It is blatantly untrue.  I have written one post on Facebook about their behaviour and the way they have treated me, in a measured non-ranty way and mentioning no names, but would never in a million years ever trash my club because I’ve loved being a part of it.  The sad part is, people who aren’t even on my Facebook and haven’t read the post are believing the bullies 😦  This is what bullies do when their behaviour is exposed – they deflect negativity away from themselves and on to the victim, who eventually ends up the bad guy.  That people fall for this bollocks is really fucking disappointing.  When I find myself questioning why this situation has come about I like to read this quote and remember it’s not about me, it’s about the bullies’ inner demons:

Today I am looking forward to meeting my bestie for lunch and a catch up, but first I am eager to take the mutt out for his morning constitutional.  Spring has officially sprung here in the UK and there is no prettier place on earth.  The hedgerows are covered in fluffy blossom, daffodils nod in the breeze, birds are busily nesting, I saw my first butterfly yesterday even though there is still a sprinkling of snow on the fells and as Bertie and I wander by the river, hoping to catch a glimpse of wild Otter, I am thankful every day to live where I do 🙂

 

 

MCAD v HIT

I’ve noticed that whenever I talk about histamine and food here on my blog there is often confusion about the cause of food reactions, so I thought I’d write down my take on what’s happening.  I’m no expert, though, just a patient along with the rest of you so I could be well off the mark and I’m sure if I am someone will point it out 😉 .

I’ve had MCAD my whole life, but I have never reacted to foods.  I don’t have a nut allergy, or a gluten allergy, for example and have always been able to eat whatever I like.  I know I’m extremely lucky and many of my readers aren’t so fortunate.

I only started reacting to food when I was in my mid forties.  It came on gradually over a few years.  Bright red flushing after meals, increasingly itchy skin, hives which I’d never had before and out-of-control acid reflux.  Eventually in 2013 all hell broke loose and I started having anaphylactic reactions after I ate anything – severe palpitations, muscle spasms (particularly in my gut and back), weird head rushes that felt like I was having a stroke, anxiety (obviously the whole situation made me anxious, but the adrenalin fuelled anxiety from anaphylaxis is a different thing altogether), huge spikes then huge crashes in blood pressure, and eventually I’d just pass out.  It was terrifying and I had absolutely no clue what was going on.

To cut a very long story short I paid to see Dr Seneviratne at St Mary’s, who tested my DAO levels which were well below normal and he diagnosed me with Histamine Intolerance (HIT).  I’d never heard of the disease before so it was a steep learning curve!   Most foods contain small levels of histamine but some foods contain large amounts.  I don’t eat meat, and it turns out that many of the staple vegetarian foods I was eating every day (cheese, tinned tomatoes, soya beans, spinach, aubergiene) are all high in histamine   Our bodies also produce histamine as part of the digestive process which is why I could react some days after drinking just water!   Fortunately we have a couple of enzymes in our bodes, DAO and HNMT, which ‘mop up’ the histamine we ingest so that it doesn’t cause us any problems.  For people with HIT, however, the enzymes are low or not working correctly so the histamine we eat in foods, and the histamine produced from digestion, accumulate in our bodies.  It’s a bucket effect – the more histamine we eat the more it builds up, and eventually the bucket overfills and we have a reaction.  No one specific food does this – it’s a cumulative effect.  I embarked on a low histamine diet and within 4 months my food reactions were under control – they hadn’t gone, but they were manageable.

There are various reasons why, if we suffer from Histamine Intolerance, our DAO and/or HNMT levels could be low.  For example, they can be reduced by taking certain medications, in which case if you cease taking the drugs the enzymes should return to normal and the HIT would only be temporary.  In my case, however, I have no idea why my DAO isn’t as it should be – I wasn’t on any drugs, my diet was very healthy and I hadn’t had any major tummy bugs or infections.  For me, HIT seems to be a permanent problem and if I veer off my low histamine diet the anaphylactic reactions come back within a couple of weeks 😦

Because histamine build-up in HIT is a bucket effect, I can often have no problems eating my breakfast in the morning but I can quite often react to my dinner in the evening, because histamine has accumulated during the day.  So I tend to eat my main meal at lunchtime and just have a small snack at night.

The food issues faced by HIT patients are very different to the food issues faced by many Mast Cell Disease patients.  In MCAD the immune system is treating totally normal foods as a foreign invader and mounting a defence against them.  It could be any food and will differ from patient to patient.   It is not a build-up and the reaction comes on soon after the food is eaten (although some people do have mild, delayed reactions which muddies the waters!).  In MCAD our mast cells release chemicals including, but not limited to, histamine which then gives us an allergic-type reaction.   Our immune system doesn’t care whether the food is high in histamine or not – it can react to any food it likes which makes treating MCAD food reactions much harder than treating HIT food reactions!   For some people with MCAD the immune system is so over-reactive they are left with only a handful of foods that are ‘safe’ 😦

It’s important to note that in MCAD the immune system doesn’t just react to food – our mast cells can react adversely to just about anything in our environment.  My biggest reactions are to drugs – my mast cells hate them – but I also react to stress, hormones, some smells, pollen, my dog and often my own emotions.

The biggest difference between HIT and MCAD, is that HIT is a food issue only.  Stop eating high histamine foods and it is possible to get your HIT under control.  In MCAD the issue is much, much wider and not eating high histamine foods won’t alter the fact your mast cells react to hairspray, the smell of bleach or your hamster.

MCAD and HIT are totally distinct and separate illnesses – you can have HIT without having MCAD, and MCAD without having HIT.  However, if you’re unlucky enough to have both they can definitely affect each other and I think that’s where much of the confusion around food comes from.  I have people comment on my blog that they are following a low histamine diet but still reacting to all sorts of foods and of course they will if they suffer from mast cell disease.  Following a low histamine diet will only stop reactions after eating if you suffer solely from HIT.  It might reduce your symptoms if you have MCAD, because if your body is already over-whelmed by histamine adding to the load by eating lots of food high in histamine probably won’t help the situation, but a low histamine diet most definitely won’t cure all your symptoms which are caused by factors other than food.  At least that’s been mine and my friends’ experience.  So it’s important to know whether you’re suffering from HIT, MCAD or a combination of the two because management strategies will be very different, and you can only know this if you are tested by someone knowledgeable in both diseases (easier said than done I know, especially in the UK).

As far as I know there is no data available on whether HIT is more common in the mast cell disease population.  It would be interesting to know if there’s a link, because every piece of the puzzle is important when we’re trying to work out what causes disease and how to treat it.

 

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 🙂