Tag Archives: Ehlers-Danlos Syndrome

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?!

 

 

Weekly roundup

I am just about on my knees with exhaustion.  This month has been wayyyy too much for a person with M.E., let alone all my other issues, and I’m at risk of having a relapse if I don’t rest more.  However, my parents both have several hospital appointments looming including my Dad’s hip replacement surgery and my house is still up for sale, so rest isn’t on the cards any time soon despite the concerns I have about the impact on my health.

Monday was my Dad’s first appointment with Rheumatology regarding his suspected Sjogren’s Syndrome.  As you may remember, as a last resort to try and find out the cause of his severe sensorimotor polyneuropathy the Neurologist at the RVI ordered a lip biopsy to test for SS which showed mild inflammation in both his lip and neck glands.  We were referred to a local rheumatologist, but as per sodding usual none of his test results had been sent through with the referral so when we saw him he had absolutely nothing to go on.  It’s the 21st Century, the entire universe is connected via the internet…………apart from the NHS which doesn’t seem to think that having access to patient’s notes is a priority.  FFS.  Despite that, the Rheumy was excellent.  Really knew his stuff, as well as knowing about CIDP (my dad’s initial diagnosis, which has since been changed) and MGUS (which my Dad also has).  He did a thorough exam and took 7 phials of blood to test for all the things my Dad has already been tested for several times but of course the Rheumy didn’t know the results of – and we wonder why the NHS is skint :-/  He’ll get back in touch when the tests come back and he’s heard back from the RVI regarding my Dad’s lumbar puncture, nerve conduction study and precise lip biopsy results.  It was a really good appointment though and I wish all the Consultants I came across were that clued up.

Tuesday I went back to my disabled friend’s house to help him unpack yet more boxes following his move.  My best mate thinks I’m mental for doing this when I have so much of my own stuff going on, however he is severely disabled, 75 years old and has no-one else to help him.   There are some things you can’t hire people to do – you need someone you know and trust to put your undies away, to sift through your most personal papers and to hug you when you come across the box containing photos of your dead wife.  He is also a bit confused, so needs someone he knows to help him make decisions on what to keep and what to chuck out and to be patient with him while he makes up his mind.   I’ve been totally alone and needing personal stuff done myself and when I am old and disabled as he currently is I will have no-one to help me.  If you’ve never been in this position you have no clue how it feels and he needs empathy and compassion, not left to get on with it.

Thursday I met said best mate for lunch.  I hadn’t seen her since before my London trip, so it was lovely to have a proper catch up and to get out of the house for a while.  She totally saves my sanity 🙂

My cleaner was off for the 3rd week running with a bad back, so Friday found me changing the bed, doing laundry and cleaning the house as I have another viewing today.  I really don’t need her to be awol at the mo and I know it’s irrational to get the hump with someone who is injured but I have it nevertheless!

Saturday I was up at 5.15am to go up to Edinburgh for the HEDGE study.  Look out for a post on that in the next few days.

This morning, as I mentioned above, I have another viewing on my house so I’m having to get up early to take Bertie out then make the house immaculate.  This house selling malarkey is knackering and on top of everything else that’s going on all feels too much.  However, it has to be done so I’m just gritting my teeth and getting on with it.  Wish me luck!

Weekly roundup

I’m sorry there have been no mid-week blog posts for a little while.  October has been the most stupendously hectic month it’s a wonder I’m still standing and I simply haven’t had the time or energy.

My house has now had over 700 website views and although I’ve had several actual viewings I have had no offers.  It’s soul-destroying because everyone who comes round loves my little cottage and I get great feedback.  No-one has told me why they aren’t interested in buying it, but I suspect it’s because of 2 things: the fact that my neighbour’s windows in the lounge overlook the garden, and the fact that the driveway is shared which can cause problems, as I know to my cost.  Neither of these things bothered me when I bought the place but they seem to be bothering buyers now and there’s nothing I can do about it 😦

It took days to get over my brief trip to London and in amongst it all I had another phantom period with pelvic pain, backache, nausea, dizziness and fatigue.  However, still no bleed and it’s now been nearly 4 months since my last actual period!

I’d agreed earlier on in the year, before I knew how busy this month was going to turn out, to be guest speaker at a camera club in the city this week.  So I’ve spent days practising, then went along on Thursday night to do my stint.  My brain has been really crap since the London trip and all day beforehand I got stuck on the opening paragraph and totally forgot what I wanted to say, but thankfully on the night it went off without a hitch and I received some great feedback from the club members which was nice 🙂  All my life I’ve been terrified at the mere thought of public speaking but since I reached middle age it’s something I’ve done a fair bit of and actually I’ve rather enjoyed it.  Having said all that, I worry myself sick for a week beforehand that my brain will let me down and there will be huge embarrassing silences as I forget what I’m supposed to be saying so it’s not something I’m going to make a habit of because I can’t cope with the stress.

Saturday I attended my first wedding in over a quarter of a century.  After living on my own for thirty years I’m used to doing stuff solo, but there’s something about a wedding which makes you sentimental for a partner so I found that aspect tough.  My parents were also in attendance, with my Dad hobbling along on his stick and my Mum in her wheelchair which I was pushing.  The Church is at the bottom of a lonnnnng downhill path, paved with ridiculously uneven sandstone slabs.  It’s Autumn, the ground is covered in slippery leaves and I was wearing heels for the first time in a decade. Going down was bad enough and I nearly dislocated both my shoulders trying to stop the wheelchair from running away with me, but coming back up was a different kettle of fish.  Trying to push her uphill with slabs that were raised by an inch in some places was beyond me, but luckily the bride’s dad saw me struggling so came along to help which involved physically lifting the wheelchair in several places over badly cracked pavers.  I think everyone forgets I have hEDS and trying to tilt a wheelchair containing an 11stone person up a pavement might do me some physical damage :-/

We finally got to the gate, which had been tied together with string by the local kids – you then have to throw money to be let out.  It was 5C, there was a biting wind and the bridal party were going to be ages as they were having photos taken so I had to ask the lads to untie all the knots and let us out and bless them they did it without a murmur.

I don’t know if you’ve ever been inside an English Church but heating hadn’t been invented when they were built in the 12th century and most are bollock freezing cold.  This one was no exception and we’d all sat throughout the service with our teeth chattering.  We couldn’t wait to get to the Village hall for the reception, only to find none of the radiators were on and it was colder than the sodding Church!  I literally spent the next 3 hours shivering, which was such a shame as otherwise I would have had a really nice day.  By 6pm though all three of us were risking hypothermia so made our early excuses and came home.  Electric blanket and teddy bear hoody from Dunelm Mill have I told you lately how much I love you? 😀

I feel wrecked this morning.  Being cold and therefore tense all day was exhausting, I haven’t slept well because my back was playing up and there isn’t an inch of my body which doesn’t hurt today.  However, I’ve made it through another busy week without total collapse for which I’m truly thankful and I do hope November is a slightly calmer month (famous last words!).

 

 

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.

 

HEDGE Study

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.