Tag Archives: MCAS

Weekly roundup

I have had one of the busiest times of my sick life this past 2 months and I thought that after I’d done my talk in Scotland last week that I could finally rest up, because I was on my last legs.  Looking back now, that seems a bit………..naive 😉

I can’t cope with the sensory overload, not to mention the physical effort, of going to a supermarket, so have my groceries delivered to my home courtesy of Tesco.  I’m in love with Tesco – they are the 8th wonder of the modern world – that is until Christmas, when the battle for delivery slots becomes a catfight to the death.  I have a delivery saver plan and therefore have access to the Christmas week delivery slots early, along with tens of thousands of other delivery saver plan subscribers.  We were informed that the slots would be available at midnight on Tuesday night and I knew I had to book my delivery then or I’d have to actually visit the store on Christmas Eve and, having done that last year and barely survived, I’d rather starve.  However, I have been so exhausted recently that there was no way I was going to be able to stay awake til midnight, so I went to sleep around 9.30pm and set my alarm to wake me, which it unceremoniously did at 11.45pm.  The ringing felt like a bomb exploding in my brain but I managed to come to and blearily got myself ready, finger poised, to book my slot on the dot of 12.  With a minute to go, however, I panicked and decided to reserve a delivery for Monday 23rd just in case something went wrong (last year the website crashed and I ended up delivery-less!).  Then on the stroke of midnight the slots for Christmas Eve appeared…………and they all said “unavailable”. Say WHAT?!  Either there were shoppers out there with freakyily speedy index fingers, or Tesco had failed to tell us they WEREN’T FUCKING DELIVERING on Christmas Eve.  Thankfully, though, I had my reserved slot on 23rd, and it’s a damned good job because at 3 minutes past midnight the site crashed.  Again!

It goes without saying it took me about 3 hours to get back to sleep and I woke on Wednesday feeling like I’d been dragged through a hedge backwards.  My plan was to rest up all day because I desperately wanted to go to my Camera Club in the evening, but the Universe had other ideas.  My Dad is on the waiting list for a hip replacement and it was booked for 24th January, but at 2pm on Wednesday afternoon the Hospital rang me to say they had a cancellation for Friday this week and would he like to come in?  Holy crap!  So then I had to go through to town to break the news to my (very nervous) Dad, who’s never spent a single day let alone a night in hospital in his life.  Mum and I got his hospital bag out (they both have one packed ready in the wardrobe for emergencies, well they’re 80 and we think it prudent) while my Dad got in the shower, as you’re supposed to bathe with antiseptic body wash for 5 days before the op.  We then had to change his bed, because he needed to use fresh sheets every day after his shower.  I did still make it to my Club, but by the time I got home at 11pm I was so ill and exhausted my brain was swimming, I was literally seeing stars and could barely focus.  Proabably shouldn’t have been driving – don’t tell anyone!

Thursday I’d arranged to go to my elderly, disabled friends’ house to finally finish his unpacking.  I knew I should cancel because I needed to conserve my energy, but he’s been in his new house 2 months now and hasn’t had the internet all that time because his laptop, modem, printer etc. was still in a box in the spare bedroom.  So I made the effort to go, and thank God I did because I arrived to find his house freezing and him flushed.  Neither the heating or hot water had come on and he obviously had a temperature.   I discovered his gas boiler had no pressure, so I re-pressurized it which got the heating back on but there was clearly a leak somewhere, so I arranged a visit from the plumber the following day.  I then forced him to ring his GP (he wouldn’t have if I hadn’t made him) who told him to go straight down to the surgery.  He landed back with stronger antibiotics because his chest infection was back with a vengeance (it never went – he should have been admitted to hospital the other week for heaven’s sake) and an insulin injector, because she’d found his blood sugar was sky high (he’s type II diabetic).  I wonder, now, if I hadn’t gone that day whether we’d’ve found him the next morning in a hypothermic, diabetic coma :-/

Thursday night I felt like the undead and barely slept in case the alarm didn’t wake me the next morning.

My Dad had to be at Hexham Hospital for 7am, which meant me getting up at 4am.  I have fucking M.E. and waking from deep sleep in the middle of the night, then having to get dressed, eat and venture out into the pitch black freezing cold of winter was never going to make me feel my best.  I dropped Bertie off, picked my Dad up and at 5.30am set off to make the 80 minute journey over the Pennines to the North East.  It’s a windy, twisty, narrow road over the mountains and my brain lurched around in my skull every inch of the way, which made me massively motion sick and at one stage I thought I was going to have to pull over to throw up, but I somehow (and I really have no clue how) got there without crashing and killing us both.  All went well and he was home at 5pm the next day – as it was Saturday my brother offered to go and collect him which was great.  My Dad’s not going to be able to drive for the next 6 weeks though, so it’s going to be a busy time for me – my life is never anything but busy and I just have to give up the expectation of it being anything else!

I’ve woken with a stonking migraine this morning and a raging sore throat (my sign that I’m way overdoing it).  Of course I have, it’s all been too much this week, but I swear I’m going to deck the next person who says to me “you need to rest more”.  Which part of my life would they like me to cut back on, exactly?  Should I leave my sick, disabled, friend to die in a hypothermic, diabetic coma or to live without central heating or hot water in the middle of winter, or without his laptop even though he’s too ill to leave the house so relies totally on the internet for just about everything?  Or should I leave the care of my parents to my siblings, who all work full time and aren’t available at the drop of a hat at 7am on a Friday morning to take my Dad to hospital, or at 11am on a Tuesday morning to drive my Mum 90 miles for a cataract operation?  Or should I not walk my dog?  Or should I not eat, which would negate my need to cook?  It’s not like I’m doing stuff unnecessarily, well apart from going to my Camera Club but even that feels vital – I need something of my own in amongst looking after everyone else.  Instead of the pseudo-caring advice I’m given, it might be more useful to me if these people who tell me to rest more actually fucking helped me in some way – offered to walk the dog, for example, or brought me round a casserole, or offered to change my bed or hoover my floors because I currently don’t have a cleaner.  But they don’t because that would mean they had to put themselves out.

I’m a bit tired and grumpy this morning, as you can probably tell 😉  I’d sell a kidney for someone to go and make me a brew or bring me breakfast in bed, but as I gave up waiting for my Prince to arrive on his white charger about a decade ago I guess I’ll have to do it.  Then I’ve got Bertie to take out, despite the fact it’s -6C outside (and will feel like -10C on my scooter!) and my skull feels like it’s being stabbed by ice picks.  I’m delighted that my Dad is OK after his operation, but I have to be honest and say that just now and again I wish someone would care for me, just for a little bit.  Dream on!

Note:  It’s 8am and I’ve just logged on to my email.  The first mail of the day isn’t from the Lottery saying I’ve won the jackpot, but from my parents’ energy company requesting a meter reading from disabled customers who are on their ‘extra care/at risk’ register.  What the fuck ever happened to Meter Readers?  Y’know, people who came to your home to take a goddamn meter reading?  It’s not like we don’t pay a shit load of money each month for our energy, more than ever before, yet we receive fewer and fewer services.  It’s another chore to add to my list.  And the first person who says to me “have you heard of smart meters?” will die.  Just sayin’.

Weekly roundup

My week started at 5.50am with me, in my dressing gown in the pitch dark, following my dog around with a jug.  Over the past 18 months he’s been drinking more than he used to, so the vet requested an early morning pee sample to test for diabetes and kidney issues.  Every time Bert cocked his leg and I placed the jug underneath, however, he looked at me in horror and refused to widdle.   I can’t blame him, I’d’ve felt the same way 😉

I eventually managed to catch a little bit of urine and it turned out to be fine.  But he is having a small operation next week.  His teeth need a scale, plus he’s had a deformed dew claw since he was born and it’s a nightmare to trim.  It grows like the clappers and has to be cut every 4 weeks, but it’s becoming increasingly painful for him to have done and he yelps 😦  So the vet thought it best to remove it, but it’s classed as a digit amputation as the rear dewclaws are attached by a bone, a bit like a small thumb 😮

My Dad had his cataract surgery on Tuesday.  It was at Sunderland, 90 miles away, and I refused to take him.  I’ve already been once this month with my Mum and both of them are due back for checkups in December for which I’ll be taking them, so I made my lazy-arsed brother go this week instead.  He works 3 shifts, then has an entire week off – I see no reason why he can’t do more for his parents.

Wednesday I was guest speaker at a Camera Club in Scotland.  I’d battled a throat infection for days and was worried my voice wouldn’t hold out, but apart from the last 5 minutes when I sounded like Donald Duck it went OK.  Well, I say that but it was an interesting evening and I’m going to do a whole post on it just because I can – so watch out for that.

Since my surprise period 12 days ago I have been plagued by severe migraines and I spent most of Friday drinking ibuprofen suspension like it was pop (I’m allergic to all other forms of migraine medication).  I’m so over the whole hormone-induced head pain I can’t even tell you.  I woke at 1am today with the right side of my brain throbbing and as I type this it feels like rats are gnawing on my skull.

Also on Friday I was informed by my estate agent that someone had requested to view my house the next day.  Eeeek, it wasn’t much notice so after I walked Bertie in the afternoon I did the 14 mile round trip into town, in Friday rush hour traffic (which did my migraine no favours), to spend £10 on flowers and to get some polish ’cause I’d run out.   My cleaner has quit and the house was a bit of a pig sty so I spent the whole of Saturday morning cleaning, tidying, washing the front gate (covered in bird poo), sweeping the yard, washing the front door and all the other stuff you do to make your house immaculate.  I palmed the dog off onto my neighbour as he barks his head off at visitors and I can’t concentrate and when 2pm arrived I waited.   And I waited.  And I waited.  And the bitch was a no show.  Four hours later I get a text forwarded from my estate agent apologizing but giving no explanation and asking if she could book another viewing for in the week.  This is the 4th booking this person has made and she hasn’t shown up for any of them.  Needless to say, I said no and that I wouldn’t be accepting any more viewing requests from her.  Today I can barely walk as I’m crippled with back pain from hoovering and mopping all the floors and both wrists and elbows are on fire.

In amongst all the dross there has been some good news but.  Each year, the Photographic Alliance of Great Britain holds a competition where they choose 60 photographers from the 40,000 members of Camera Clubs around the UK they deem to be a master of print.  And I am absolutely thrilled to say that, for the 2nd year running, I have been chosen.  I still have to pinch myself that little old me, lying in my bed in the wilds of the lake district has found something that, not only can I do and which gives me huge joy, but has reached this level of acclaim.  It’s freakin’ awesome 😀

Liberate me from the liberators!

I rarely talk about food on my blog these days.  For the first 2 or 3 years it was all I could talk about because I’d spent 18 months battling severe reactions after eating, not to mention after any kind of medication, and honestly thought I’d die so, naturally, the topic was all-consuming.  But my Histamine Intolerance and Mast Cell Activation Syndrome are, for the most part, under control now and have been for at least a couple of years so I’m happy to not have to think about every single thing I put in my mouth any more and the relief is HUGE.

Now and again, some lovely person out there in the Universe will leave some catty comment here on my site.  Something like “you’re talking shit” or “this site is a joke” which is hurtful considering how ill I am and the effort which has gone in to 6 years of writing twice weekly posts, not to mention the thousands of hours that have gone into research, putting together information, links and photographs, or all the recipes I’ve made available here for free, but not everyone in the world is nice or has manners so you just have to take it on the chin.  A couple of weeks ago, one of these kind people left a message on one of my histamine-related food pages to the effect that the information was out of date and I might like to sort that out.  I was taken aback, as I’d only revisited the page in January this year and hadn’t heard on the grapevine of any significant new information on histamine in food lately (or ever), so I asked the poster to please point me in the direction of said new information so that I could share it with all my followers.   She didn’t reply.  They rarely do when asked to provide proof to back up their claims.

I had some free time today and, despite the most god awful thumping bloody headache, I decided to do some digging to see if I could find any new information on histamine in foods.  I failed miserably, but I did find an abundance of low histamine food lists and every single one had a big list of “histamine liberators”, ie those foods not actually high in histamine themselves but capable of forcing mast cells to release histamine.  Things like egg whites, strawberries, ‘additives’ (unspecified), pineapple, peanuts, fish, pork, liquorice, spices (again unspecified), tomatoes and of course citrus fruits.  Seriously?  No, really.  Seriously?!  And then people have the gall to say that my painstakingly researched information on histamine in food is out of date!

I spent nearly a year researching histamine in foods and could find zero evidence for any food “liberating” histamine from mast cells.  If you don’t believe me, Google til your fingers bleed.  There is no such thing.

Hardly any of the low histamine foods lists, even really popular ones like SIGHI, reference the research on which they base their information.  Most freely admit it’s gathered from patients,  which is about as much use as a chocolate fireguard.  There is a reason we have laboratory tests and double-blind randomized controlled trials and it’s so there is a level playing field, all the participants have exactly the same disease and no other disease (like fructose intolerance, or coeliac disease, or an issue with nightshades), and the resulting information is accurate.

So where has this myth that egg whites, citrus fruits or strawberries liberate histamine from mast cells come from?  It took me ages to work that little puzzle out and eventually I realized that where research was cited on a low histamine food list it usually came from a single source: a paper called ‘Histamine and histamine intolerance’ by Laura Maintz and Natalija Novak in 2007 which was published in the American Journal of Clinical Nutrition, and their information came from various sources cited at the end of their paper.  I followed the trail and discovered that the myth about egg whites came from ‘research’ (and I use the term loosely) by Schachter and Talesnik in 1952 (!) that egg white releases histamine in non-sensitised animals when injected intravenously.    A 64 year old single animal research study which didn’t even involve the animals actually eating anything is the basis for everyone excluding egg white on low histamine diets – jaw dropping isn’t it?   And the myth about strawberries liberating histamine came from unpublished data by Schachter in the 1950s but the paper is so old and obscure no-one has actually been able to obtain a copy to see what it actually says! In the Jul-Aug 2005 edition of the Netherlands Journal of Medicine is a paper entitled ‘Mastocytosis and adverse reactions to biogenic amines and histamine-releasing foods: what is the evidence?’ in which the authors conclude “We could not find any study on histamine-releasing effects of most of the foods suggested of having histamine-releasing capacities.”  I rest my case.

Everyone is a lot more savvy and clued up on histamine these days and there are now dozens of sites giving information on low histamine diets………….and they are all, without exception, wrong.  I simply can’t understand why these myths linger or why sites that really should know better perpetuate them.

Most of the people who write low histamine food lists are genuinely trying to be helpful and offer guidance to patients suffering from HIT and MCAS and it is nice to hear about other patients’ experiences of their safe, and not so safe, foods but it’s merely anecdotal and you simply can’t treat this kind of information as fact.  For example, buckwheat is listed on many lists as a safe food low in histamine, but I simply can’t tolerate it.  The truth is no-one has ever tested buckwheat for its histamine content as far as I’m aware and I have no clue where the testing figures or research information is that says it’s ‘safe’ for someone with HIT or MCAS to eat.

I could be wrong, of course.  There could be exciting new and accurate information on the histamine content of foods out there which I know nothing about and if so I hope one of you, my lovely readers, will tell me all about it. I’d like nothing more than to know which foods are safe to eat for someone with raging HIT and delinquent mast cells and which foods aren’t, but I suspect I’ll still be guessing by Christmas…………2030!

 

Weekly roundup

I’m a bit late with my roundup on account of the fact I’ve spent the morning with paramedics – more on that shortly!

My week actually started out relatively OK.  Well, if you can ignore the fact I was feeling shite and on the verge of a relapse ME-wise that is.  As I mentioned in last week’s roundup, I’ve been doing wayyyy too much in recent months and it’s now seriously affecting my health.  So, this week I decided to cancel everything in order to rest.  Sounds simple doesn’t it, but in reality it’s like wrestling a bear.

Monday I’d arranged to meet my 75 year old disabled friend, Dave, at a local furniture centre to choose a riser-recliner chair, on account of the fact he can now barely get out of an ordinary chair to standing position.  It took 2 hours, not that I minded, but I’d already spent the morning helping my parents, then 2 hours with Dave, then I walked the dog on the way home and by that stage it was 3.30pm and time for bed.  So Monday was a bit of a right off.

There’s also the minor irritants of still having to feed myself, stack the dishwasher, bathe, shop and walk the dog every afternoon (and 3 mornings).  And let’s not forget the fact I’m guest speaker at another Camera club (booked a year ago!) in 10 days time so need to put together a 2 hour speech from scratch.  Oh, and I’m selling my house and this week my fucking cleaner decided to quit on me, so now on top of feeling rubbish and everything else that’s going on I’m having to change the bed, hoover and mop the floors, despite the fact it kills my back.  Other than all that, though, I’ve been resting – honest  😉  I’ve had to, because for 3 days I had one of the worst bouts of vertigo I’ve had in ages and every time I moved my head the entire room spun.

Friday my Mum was having cataract surgery at Sunderland 90 miles away and it was booked for 10am which meant getting up at 6am, breakfast, dressed, dog walked, into town and Mum picked up for 8am.  I was fucked before we’d even set off.  It all went brilliantly, though, and we were actually back home by just after lunch (no mean feat when it’s a 1hr 45min drive each way!).  Of course, I had the dog to walk in the afternoon, so eventually got back home absolutely exhausted……..only to find a car parked in my driveway, blocking my garage.  It was a customer of the upholstery business at the end of my drive.  Regular readers will know that for 3 years the twat who leases the buildings for his upholstery business has allowed, nay encouraged, his customers to park in my drive meaning I can’t get in or out.  It’s illegal because the right of way that exists is to “pass and repass” which means to travel over, not stop on, plus it causes a legal “nuisance” to me.  But he doesn’t give a flying fuck.  I wouldn’t care but he owns the top part of the drive, so I asked the car owner to please pull forward 6 feet so I could get in my garage at which the upholstery guy went ballistic at me, red faced and ranting that I was being unreasonable.  I was as polite as always and stood there while he shouted, then asked the customer to please move his car.  Again.  Which he did.  After I parked up, however, I went into the upholsterer’s office and told him I had had enough and was taking legal action against him.  I’d already got it all set up because this has been going on for nearly 4 years now, so I made a quick call to my solicitor who will sending a pre-action letter this week.

The thing is, though, that I am selling my house so this “dispute” will now need to be made clear to any buyer, which is bound to put people off and may affect the sale.  I can’t be verbally abused every time I need to leave my house, though, especially as shit-for-brains is breaking the law and I am doing absolutely nothing wrong!  So it needs sorting once and for all.

As if all that weren’t bad enough, I enter the house to find a note through the door – Amazon had delivered a parcel in my absence which had been placed in the “grey bin with the black lid”.  Er, you mean the dust bin?  W-T-actual-FUCK?!

I was telling the tale on social media afterwards, and one of my friends says “I haven’t seen one of those since 1993.  The delivery guy obviously didn’t know it was a dust bin”.  Er, really?  The delivery note said “grey bin” so he was well aware it was a bin, but even if he wasn’t I’m not sure what else it could be masquerading as?  The giveaway would have been when he took the lid off to place my parcel inside and it was full of rotting food and 2 black bags of disgustingly smelly dog shit.  That I’m fairly sure, should have given the game away.  Needless to say I then spent the next 30 minutes chatting online to Amazon’s complaint’s department in some far-flung province of India because they don’t give you a goddamn email address to write to and Indian labour is cheap – who cares they don’t know what an English dust bin looks like either and couldn’t give a flying fuck in any event.

Saturday, of course, I spent the day with a stupendous migraine.  Par for the course after all that driving, not to mention stress.  Plus the vertigo was back.

Sunday mornings, after I’ve walked the dog, I sometimes meet my elderly, disabled friend Dave for coffee at a local cafe.  I had no intention of going today because I was feeling rubbish (no pun intended) but Dave had emailed me on Friday to say he wasn’t feeling well, so I decided to make the effort and see him.  He goes every week at 9.30am, but when I arrived at 10am he wasn’t there.  I waited for 10 minutes then started to worry and, to cut a very long story short, finally rocked up at his house to find him lying stark naked on the bedroom floor having fallen out of bed 😦  He’d lain there for 4 hours, but despite being cold he looked flushed, had a banging headache and a nasty cough so Sherlock Holmes here deduced he had a chest infection which is why he’d gone off his legs.  I rang for an ambulance.  While we waited I managed to get him sat upright on the floor, get his pyjamas on, socks and a sweater, got him a hot drink and made him eat a cracker (he’s diabetic).  Two hours later, with a confirmed raging temperature, chest infection and irregular heartbeat (he’s already had a heart attack, has a stent and suffers from angina), he was taken off to the Infirmary – I’ll ring at 6pm to find out which ward he’s been admitted to and will go through to the city tomorrow to see him.  Who needs to rest anyway?!

 

 

Histamine Testing

As regular readers know, last year I discovered a research team in Hong Kong who had a prototype testing device for measuring the histamine content of food.  They had made it predominantly to test for histamine in fish and seafood, but after I wrote to them explaining about our illnesses and the fact we were all desperate for a way to be able to test the histamine in other types of food they said it should be adaptable for our needs.  I was beyond excited and one of the researchers came over to the UK to demonstrate the device to me.  That was back in April, but despite saying they’d send me the prototype to try by early June I heard nothing from them.

Today I received an email from the lead researcher to say that unfortunately the company they’d approached to produce the prototype wanted $30,000 and there was no way that was affordable for them, so the project had been shelved 😦  I am absolutely and utterly gutted.

Not only has the project been shelved, but the lead researcher has left his post in Hong Kong to move to the UK in a different role so that is very much the end of that.  So my friends, we are still out in the wilderness in terms of being able to test our food for histamine and playing Russian Roulette as to whether we’ll go into anaphylactic shock or not on any given day.  Great.

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.

 

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 🙂