Author Archives: Jak

Weekly roundup

Y’know those times when the stars are aligned, everything is seamless and effortless and life is as smooth as a glassy lake?   Yeah, this week has not been one of those times.  If something could go wrong it has, just to fucking spite me.  Get a brew and a KitKat, this is a mammoth post 😉

I have the most important few days of the year coming up.  I am having 10 of my images exhibited in a funky, well-known gallery right in the heart of London.  I know, 😮 and double 😮  I have spent 2 months getting the pictures perfect, printed and mounted and needed to get them framed ready to ship off to the Big Smoke.  I already own 5 lovely black frames so went on Amazon to order another 5 to match, only I needed a different size and Amazon didn’t stock them.  No worries though, I found a marketplace seller on Amazon who did.  Amazon usually dispatch within 48 hours, but I waited and waited for the frames to arrive getting more panicky by the day and eventually after nearly 2 weeks they appeared…………and were fakes and nothing like the frames I needed.  FFS.  So then I had to contact the original frame manufacturer directly and get them fast shipped, which cost £45 more than it would if I’d bought them on Amazon.

I, of course, then needed to send the fake frames back.  Gets them all packaged up and in the car to drop off at a Collect+ store…………….and their computers were down and they had no clue when they would be fixed so they couldn’t send them.  FFS.  Again.  So I had to do a 20 mile round trip to the nearest other drop off point – I should request an hour of my time plus petrol money be added to my refund.

My friend has just moved house so I thought he was bound to have a strong cardboard box large enough to fit my 10 exhibition prints for shipping.  Nope, that would have been far too easy.  So I spent 2 hours on Google trying to find something suitable, which wasn’t so large I’d have to remortgage my house to send it, with no joy ;-(  However, I eventually discovered a cardboard box making company literally 10 miles from my house and they custom-made me a perfect sized box within two hours of me contacting them, which was the most expensive cardboard box ever made but at this stage I would have sold a kidney for a suitable packing crate.

Spent ages getting my pictures labelled, title cards printed and bubble wrapped everything to within an inch of its life.  I could then weigh my box (14kg) and arrange a courier to deliver – this was on Wednesday and the package had to be in London on Monday!   It had to be a timed delivery slot, though, because obviously the organizers don’t actually live at the Gallery.   DHL quoted me £77 – are they having a fucking laugh?!  The sodding box has to be returned too, so the cost would be doubled.  I literally had palpitations wondering how on earth I was going to get my pictures to The City on time.  However, fate struck once again when I remembered the box-making chap telling me he used Hart Distribution, so I contacted them and they quoted me £22.50 which included £150 insurance and guaranteed segregation for my fragile box from the rest of the packages (it would only have cost me £10 if I hadn’t needed a timed delivery).  Yayyyyyy!  My precious cargo is winging its way to Londonia as I type and I can only pray it gets there in one piece.

In amongst all this, on Thursday I had to take my Dad on a 130 mile round trip to Hospital regarding his hip replacement.  At 2.30am that morning I’d woken with a migraine and despite taking three lots of infant Ibuprofen (the only pain relief I can tolerate) I hadn’t been back to sleep and my head was still banging at 11am when I picked him up.  I don’t know if you’ve ever driven a long distance with a migraine and after only 3 hours sleep but suffice to say it was no fun.  Nope, no fun at all.  The appointment went really well though and they are hoping to do his surgery in the next 3-6 weeks 🙂

My house continues to be on the market and last Thursday I received a viewing request for the same day I was taking my Dad to the Hospital.  You can manage viewings through your online account, so I requested a new date from the viewer.  I heard nothing for 5 days, then on Weds I receive another viewing request for Friday morning at 9am (fucking 9am?!) from a woman with weirdly similar contact details as last Thursday’s woman, ie her name was Cara instead of Tara, her mobile was only 1 number different etc.  Unnerved, I asked the Estate Agent to find out what was going on and it turned out to be the same lady but her details had somehow gotten mixed up.  Hmmmmm, really?!  Anyway, I logged in to my account and confirmed the booking.

While I was at the hospital on Thursday, however, I received another viewing request from the same woman for next Tuesday.  WTF?!  So when I got home at 5pm I rang the Estate Agent and stayed on the line while they contacted the viewer.  Turned out that she hadn’t received confirmation of Friday’s viewing because I’d sent it to the email and mobile number given which of course were incorrect *sigh*.  However, she confirmed she could still do the next morning at 9am.  So despite still having a migraine, having had no supper and a lonnnng day with my Dad at the hospital I tidied up the house ready for the viewing.  At 7am Friday morning I log on to my email…………to find the bitch had cancelled and requested the Tuesday viewing again instead.

I emailed her to say I couldn’t do Tuesday as I was in London so could she still make that morning at 9am.  She emailed back that she was writing a report, so no.  She sodding well knew she was writing a report the night before when she’d confirmed the viewing.  She then went on to slag off the Estate Agents for being “unprofessional” despite the fact it was her messing everyone else around.  So I told her that I was now not available until week commencing 21st Oct and if she requests a viewing then I’ll say I’m busy.  If she’s this much of a nightmare before she’s even looked at the house what would selling to her be like?!

Despite all the above, regular life goes on.  Two months ago I ordered some shoes from an online company I hadn’t used before.  I ordered two styles, kept one pair and sent one back, however they have not refunded me despite me contacting customer services three times.  So I had to open a dispute with Paypal, who also got nowhere with the company so have thankfully credited me the cash while they sort it out with the seller.

Back in June I had an appointment at Sheffield to see an Immunologist who specializes in MCAD.  It’s a 7 hour return train trip, so I booked a hotel to stay overnight and my return train tickets.  Only the hospital cancelled and I never made the journey.  The train company’s T&Cs say that if you don’t make the trip you can get a refund on your ticket, so I applied.  Three months, and several customer services requests later, I had still not been reimbursed so I made a formal complaint, only to be told to ring their web team who would refund me – because I hadn’t already FUCKING TRIED THAT!  Deep breath Jak, deep breath 😉  I am so pissed off with companies trying to fleece us all.  Either not refunding and hoping we’ll forget about it and they can keep our cash, or keeping hold of millions of our money for months all the while earning huge wads of interest.  So I found the email address of the CEO of Transpennine Express and emailed him.  I obviously didn’t expect a response, so imagine my shock when this week I received a reply from the Managing Director of Customer Relations apologising and offering me not only the refund but £50 compensation.  Go me 😀

And to top off my fabulous week my cleaner told me on Weds that she had an interview for a full-time job and if she got it she’d be quitting.  Getting help when you live in a very rural area is stupendously difficult, so is it awful of me to admit to doing mental cartwheels when I found out she didn’t get the position?!

My reward for making it through a stupidly stressful week is to have yet another migraine.  I am typing this lying flat on my back with my head resting on a heat pad, feeling sick to my stomach and with the room spinning like I’ve chugged 10 pints of Cider.   Really God?  Like, fucking really?!  I can only hope my brain heals itself in the next 24 hours before I have to make a 3 hour train journey on a tilting Pendolino otherwise I’m royally screwed.

On that note I shall love you and leave you.  Pray I’m well enough to enjoy my Exhibition – I’ll tell you all about it in next week’s roundup!



Weekly roundup

I’ve had one of those weeks where every single thing has gone wrong.

Out of the blue at 11am Thursday morning I received a request for a house viewing that afternoon, so a mad scramble ensued to get everything cleaned, tidied and perfect.  After the viewing I received 5 stars on the feedback form, so the house was just what he wanted.  He then preceded to say my immaculate little cottage wasn’t worth what I was asking for it and wanted to knock £25,000 off the price.  I would have laughed if I hadn’t been so fucking exhausted.

Feeling really MEish and unwell, that evening I got into bed just wanting to chill with a brew and Say Yes To The Dress.  Turned on the telly…………and saw the dreaded blue screen with ‘no satellite signal’.   Arrrgghhhhhh.   I eventually worked out that when I was recording a programme the signal went off from every other channel, so I tried all the usual fixes but nothing worked.  *Sob*.  However, I got up the next morning with renewed determination to not spend £60 on a Sky engineer, removed all the cables, cleaned them and put them back and yayyy I’m back to watching grown women fight over whether to buy the sexy mermaid or the humongous ballgown.  Get the meringue you weirdo, it’s your wedding day and the only time in your entire life you get to look like a toilet roll holder princess 😉

I was woken at 4.30am on Saturday by the sound of my dog retching.  Pets at Home no longer stock the hard rubber balls he loves so I’ve had to order some from t’internet.  While I was waiting for them to arrive I gave him a softer ball someone had put in his Xmas stocking last year, only he tore it to bits behind my back and swallowed it 😮  So at 4.45am I was cleaning up vomit laden with bits of white rubber while the dog promptly went back to sleep and had the cheek to snore.  And bugger me, if at 4.15am this morning the mutt didn’t wake again retching, though this time he just upchucked bile 😦  I do hope he hasn’t got rubber lodged somewhere and needs vet assistance – it sounds terrible but I don’t have the time, energy or cash this month to be dealing with a sick Bertie on top of everything else.

My cleaner let me down on Wednesday and my dog walker couldn’t come on Friday.  Again.

I have put on a shed load of weight in recent months and currently look like a Telly Tubby.   I got my winter clothes out this week and my jeans actually laughed at me when I tried to fasten them, so I’ve had to buy some new kit.  I spent ages on the M&S website picking out stuff to hide my Tinky Winky arse, go to the checkout……..and my credit card had expired.  Fuckety fuck fuck.  There’s a link for me to add a new card, but when I click on it nothing happens.  So I stab the keyboard repeatedly with my finger, but surprisingly the link still doesn’t open.  After the week I’ve had I want to blow my laptop to smithereens with a home-made bomb but I resist because knowing my luck I’d be arrested as a terrorist.   I try another browser, same result.  So I have to start from scratch, enter the ‘my account’ section, add a new card, then re-shop and re-checkout.  I’m too tired for this shit.

I have two major photography events coming up – more on those at a later date – but suffice to say I needed to print fifteen A3 size pictures off………..and I ran out of ink.  I also needed to mount and frame ten of the pictures, so I sent for 5 frames off Amazon to match 5 existing frames I have – it’s really important everything is perfect.  I waited 10 days for the frames to arrive, not realizing the order wasn’t fulfilled by Amazon but by some company in outer-mon-shagging-golia, and then when they got here they were fakes and nothing like my existing frames.  Now panicking as I have a deadline, I’ve had to pay £45 more for the frames directly from the manufacturer and my heart is in my mouth waiting for them to arrive and for them to not be damaged in any way.

While I was sat on the lounge carpet mounting my pictures I reached behind me for the scissors……………….and felt something in my pelvis snap.  Ouch.  Ouch.  Fucking OUCH!  My guess would be I’ve subluxed my SI joint and torn the ligament.  Again.   I’m now barely able to hobble and in constant pain during the busiest month I’ve had in a decade.  Thank you Universe for your help and compassion, you twat.

Today my Dad is going to a nearby Castle for a memorabilia weekend to which he’s submitted some images of his Dad who used to work there in the 1950s.  Unfortunately I am unable to take him in the wheelchair as I’m going to a literary festival with a friend, so my brother is going with him.  However, he flatly refuses to push him round in the wheelchair even though he’s totally fit and well, so my Dad asked if he could borrow my little mobility scooter that goes in the car boot.  For 2 years now while my Dad has hardly been able to walk I have tried to persuade him to use a mobility scooter but would he?  No!  He’s either hobbled around in agony or he’s made his sick daughter push him in the wheelchair, but the second my brother tells him to use the scooter he’s on it.  I’m so pissed I could slap the pair of them.  So I’ve had to virtually dismantle the shed to get the scooter out (I don’t use it anymore as I now have a big road scooter), clean it, charge the battery, put it together to let my Dad have a go so he knows how to use it, then spend an hour writing instructions with pictures for my brother on how to take it apart and put it back together for transportation.  Because I’m’ clearly not having a busy enough week.

Since my recent phantom period my stomach has been swollen like a football and I have not been in the best of humours (just in case you can’t tell from this post).  However, today I am meeting my bestie for lunch and we are going to listen to a couple of speakers talk about some shite I can’t even remember and I am very much looking forward to getting out of the house and doing something different.  I’ve been awake since 4.15am, am dizzy and my pelvis is on fire but I’m sure driving 60 miles and sitting on a hard chair for a few hours will be grand and if I pass out my mate will cover me with her jacket and let me sleep.


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.


In 2017 the diagnostic criteria for Ehlers-Danlos Syndrome changed and there are now 13 defined types.  By far the most common is Hypermobile EDS (hEDS) yet this is the only form for which no gene has been identified, so The Ehlers-Danlos Society have decided to enroll 1000 patients who fulfil the 2017 criteria for hEDS in a genetic study to try and find the gene(s) responsible.  This would be a huge breakthrough not only in our understanding of hEDS but also as an aid to diagnosis.

As far as I’m aware, the study is using patients from both the USA, Europe and the UK and I am delighted to say I have been accepted as a participant 🙂  I will be travelling up to Edinburgh at the start of November for my blood draw.  It’s a 3½ hour return journey for me and there are no travel expenses, however I feel it’s too important an opportunity to miss so despite the huge effort involved I am very much looking forward to taking part.

For more information on the HEDGE study, including how to be included in the EDS global registry which is a pre-requisite to taking part in HEDGE, click here.

Weekly roundup

My house sale is not going well.  Despite more than 300 hits on the website I have only had 2 viewings and 1 enquiry.  Both viewings gave me excellent feedback (4½ out of 5 on the form) yet neither has requested a second visit.  If a property scores 5/5 on space, location, value for money and condition WTF more do you want?!

I spent another day helping my friend who moved unpack.  His son and wife deemed to visit him last Sunday but despite being there for the entire day when I next went they hadn’t done a fucking thing.  My friend didn’t even have a fridge/freezer (it was built in at his last house), so had no butter, hardly any milk nor any frozen meals (he doesn’t cook as he’s too disabled) yet neither son had organized one for him.  All it would have taken is a look on Currys website and a click of a button!  So when I was there I rang up a local electrical company, ordered one and it came yesterday.   I also went to Argos and got him a microwave, which he needs for soup etc. as he can’t handle pans on the stove.

I have skipped my third period 🙂  Although I had a phantom period yesterday, with period pain, nausea, backache and generally feeling rubbish, on the whole I’ve felt the best I have all year these past couple of weeks.  I have had only 1 migraine this month ( whoop whoop!) and it has been fabulous not to be tortured by endo and adeno pain (I will probably always get some pain due to years of adhesions, but at least my uterus isn’t on fire every 4 weeks).  I’m still absolutely knackered and not sleeping, plus my back is killing me, but I’m so grateful to have a respite from the excruciating noggin pain I can’t even tell you.

I’m enjoying my new Camera Club more than I thought I would.   I was sat on my own this week so two of the female members made a point of speaking to me, which was kind of them.  I enjoyed the 35 minute journey home over the mountains in the dark, fog and lashing rain less but beggers can’t be choosers.

Bertie was the world’s naughtiest dog yesterday.  We got up at our usual 6am and it was chucking down outside.  I opened the back door to let him out for a wee while I prepared his breakfast, he took one look at the weather, turned round and peed up a cardboard box in the hall instead 😮  He hasn’t widdled in the house since he was a puppy the little tyke!  Luckily I caught him mid-stream, shouted a very loud NO! and used my foot to gently shove him outside in the rain, so he got wet in any event.

Whether he likes the rain or not we are having to go out in it this morning.  I’m looking forward to our walk like a hole in the head, particularly when my bed is so comfy and cosy and……well…….dry!  Why has no-one invented an indoor doggie loo yet?  A urinal for mutts is fairly much a necessity I would have thought, especially if it flushed at the press of a paw.  I’m going to fantasize about that on our sopping wet tramp round the woods, while great fat rain drops fall from the trees and inevitably end up down the neck of my anorak.  They’re like heat-seeking missiles and my flesh is the target.  The fuckers.



Mini Me

There was a discussion on Loose Women recently about whether or not to have children.  It’s something I don’t really ever talk about because it seems to create animosity – I don’t talk about politics for the same reason.  As a society we’ve come a long way in accepting other people’s choices in some areas, gay marriage or gender fluidity for example, but are still stuck in the dark ages in others and babies are one such area.

Deciding whether or not to have children is a big decision for anybody and when you’re chronically ill there is an added dimension.  I know that the subject of kids can be hugely painful for some women if they desperately want a child but can’t have one and I don’t disregard that in any way.  I also appreciate that if you have offspring you love them with all your heart.  However, I don’t share your feelings and that’s allowed.  Just putting that on paper I’m already fearful of the response and I shouldn’t have to be.  I should be allowed to say I don’t want babies without being scared.

I have never wanted kids.  I wanted to get married as a teenager, but when I fantasized about my future husband the image of sharing him with a couple of children never entered my head.  Everyone said my biological clock would eventually kick in.  So I waited.  And I waited.  And nothing happened.  My biological clock is clearly sipping child free cocktails in the Maldives and watching harassed parents running around after their toddlers with a wry grin 😉

I’m going to go further than the fact that I have no innate desire for kids.  Children irritate the crap out of me (if I was scared to say I don’t want babies saying that makes me want to go into witness protection).  Just hearing kids playing outside and the inevitable squealing and shouting and crying that goes on is like fingers on a blackboard to me.  And parents who let their kids run around restaurants, bothering other people not to mention getting in the way of waiting on staff carrying hot food, should be banned.  It amazes me that just because other people love their children they expect me to.  I don’t.  They’re annoying as all hell, however I usually don’t say that out loud for fear of offending.  I, at least, am sensitive to other people’s feelings even if they’re not sensitive to mine.

There is pressure for all aspects of society to be “child friendly” which means there is a distinct lack of space for me as a childfree woman.  No-where I can go to escape other people’s offspring.  And, here’s the absolute shocker, I’m as offended by that as no doubt many of you are by the fact I don’t like your children.  I’m not allowed to say this though.  People with kids are allowed to say it’s unacceptable that there aren’t enough family friendly spaces, but I’m not allowed to say it’s unacceptable there are no kid-free zones.  God forbid not every woman on the planet is maternal.

When I tell people I don’t have children they either look pitying at me like I can’t have children and isn’t it a shame, assume I’ve chosen a career over babies, or they ask me why not.  How fucking rude and intrusive.  When I meet a parent I don’t ask them why they have a narcissistic need to produce a mini version of themselves because it’s none of my business (I’ll probably lose followers over that comment 😉 ).

I fake liking children every day.  I coo over babies, play with my friend’s toddlers and pretend I’m interested in school reports but the honest truth is I’m thinking in my head “when is it polite to make my escape?”

Historically women’s only role in society was to bare, and care for, children.  We weren’t allowed to be educated or to work outside the home, so if we didn’t have children we had no purpose.  And, of course, until the advent of contraception we had no choice in the matter.  In the modern world, however, all this has changed and statistically 1 in 5 western women reach menopause child free (I’m using the term “free” deliberately, because I don’t feel any “less” because of it).  It turns out that given the choice many women don’t want a mini me.

On a fundamental level I feel no need to leave behind my DNA as some kind of legacy to the world.  It is enough that I have existed.  I don’t feel the need to furnish my parents with grand-children – they’ve already had their offspring.   It is not selfish to love my life exactly as it is and to not want to negate my needs in favour of a little person’s – I don’t understand the whole “selfish” concept, it makes no sense whatsoever.  Is the fact I’d prefer to snuggle under the duvet on a Sunday morning to taking my kid to play football and standing in the rain pretending to care about a sport I loath selfish?  If so, I guess I plead guilty as charged.

Women who have children can be very defensive when I talk about my feelings.  I’m not attacking you or your choice, but neither do I expect you to attack me or mine.  I love my dog but I don’t expect you to like dogs, let alone love mine the way I love him.  I don’t let him bark his head off in the garden because it would be intrusive of your peace and quiet.  I don’t let him jump up at people, ruining their trousers with his dirty paws.  I wouldn’t let him sit next to you in a cafe while you’re eating and beg.  I don’t expect supermarkets or posh restaurants to allow dogs – there have to be some places which are dog free for those who loath cute, furry, adoring animals.  We are all different and society should reflect that.  There is no right or wrong, just choice.

I’m going to press “send” now.  Gulp.


Weekly roundup

I did something big huge this week.  I’m not sure if it was the right, or the wrong, thing to do but I did it anyway and I guess time will tell.  I put my house up for sale.  😮 and double 😮 .  I had it valued, then stuck ten grand more on the asking price so that if I sold it I could then increase my offer on the bungalow I want.   Even then I’ve no idea if my offer would be accepted, and it may be that even if I sold mine I would have to back out and let my buyers down, but fortune favours the brave an’ all that.

I haven’t gone through an Estate Agent.  They want nearly £3000 off me and I’m not sure what I’d be paying the money for.  I can take my own photos (probably better than the EA), have produced my own brochure (not as glossy as the EA granted) and would be doing my own viewings in any event.  The only thing I really need from an EA is advertising on Rightmove & Zoopla as that’s where everyone looks for houses these days but is only available to Estate Agents, so I’ve gone with an online EA which has cost me the grand sum of £99.  They still handle the viewings and offers and my property was on Rightmove within 24 hours of me uploading the details so, as I expect to not be part of a chain, I think it’s the right move for me 😀

My house went up for sale on Weds morning and so far I’ve had nearly 200 page views (though 20 of those are probably nosey parkers from my village 😉 ) but only one viewing.  Which is hugely disappointing I’m not gonna lie.  A couple came round yesterday and although they loved the cottage (everyone loves my cottage) I’m not sure it’s right for their circumstances so I’m not expecting an offer.

I’m a naturally tidy, clean person but despite that it took me nearly 2 days to get the house ready for a viewing.  For a start my spare bedroom was a photography studio, so all my gear had to be dismantled and the bed (which was wrapped in plastic in my shed) had to be put back.  It was hard work even with help.  I had the patio pressure washed, the windows cleaned and then had to cart all my studio gear and the dog beds up the drive and into a spare shed.  All that and the viewer isn’t going to buy it anyway!  This morning I am so stiff and so sore I can barely walk :-/

As if putting my own house up for sale wasn’t stressful enough, on Thursday I helped a friend move house.  He is in his seventies, can barely walk due to failed back surgery and severe diabetic neuropathy and is becoming forgetful.  He lost his wife 2 years ago and couldn’t manage in their huge 5 bedroom rural mansion, so has moved to a bungalow in town.  He has 2 sons and 2 daughters-in-law and none of them offered to help.  They do live 100 miles away, but it’s only a 90 minute drive and I would have crawled over hot coals to be there if it were my parent in that position – some people’s total lack of empathy never ceases to amaze me.  So I offered to help and thank God I did because he would never have managed on his own, however good the removal people were (and they were brilliant).  Bless him, he hadn’t slept a wink all night and didn’t eat a thing the entire day, despite me offering to make him a sani or go to fetch him fish and chips.  He was also very tearful because leaving his home meant leaving all the memories of his beloved wife behind, so he needed cuddles and someone to just make a fuss of him, get him to take his painkillers, make him a hot drink and generally just be there for support – which his sons should have done!  The removal men and I managed to get his bedroom, the lounge and the kitchen ship shape and we are both going back one day this week to finish unpacking – my friend cried with gratitude.

So, the entire week has been taken up with housey stuff.  Today I am resting.  I could do with a month in the Bahamas but a day in front of the telly will have to do.  First, though, I have to take the dog out and it is chucking down.  And I do mean chucking down.  That tropical kind of rain which roars as it falls and sends rivers running down the street.  Super.  I’m looking forward to it in the same way I’d look forward to a bikini wax.