Category Archives: Ehlers-Danlos Syndrome

The Renovation Project

Due to my health problems, and thinking about the future and my old age, I’ve spent 5 years looking for a single storey bungalow to call my forever home.  I knew I’d probably end up with a renovation project because that’s all I could afford, and in any event as this will be my last house I want it how I want it rather than a layout which suits a family or couple, but there simply wasn’t much available in my area and I didn’t want to move too far because not only do I love where I live but I also have my parents nearby to consider.

So I was just about to give up hope when I had an offer accepted on a knackered 1970s ugly pebbled dashed village bungalow the week before Christmas, less than 4 miles from where I currently live!   I’m both excited and absolutely terrified, not only of the amount of work involved but the fact I am alone and chronically ill – a house move on its own would be hard enough, but to move into a house which has a mouldy, sinking concrete floor and an olive green corner bath is insanity 😉

My friends and family have asked to see the plans and pictures, but due to my lack of both time and energy I decided the easiest thing to do was blog about the project, so if any of you would like to follow along I’d be glad of the company 🙂  To see more about the background to the move click the About menu at the top of the page – the photos and plans are also there.

I don’t know whether I’m being extraordinarily brave, or extraordinarily stupid, but it’s happening so wish me luck!

 

 

Weekly roundup

We cruise along in life blissfully ignorant of the fact that on any given day, totally without warning, our world could come crashing down.  That’s what has happened to my sister-in-law this week when she was diagnosed with breast cancer at the age of 49.  Of course, it would be the s-i-l that helps me with my parents, has a full-time job as a home care manager and still has a child living at home, and not my other s-i-l who does absolutely bugger all – it’s the unfairness of it that makes your blood boil.

As you all know, I’ve been trying for over 2 years now to find a reason for my Dad’s severe sensorimotor polyneuropathy.  The neurologist at the RVI in Newcastle, as a last resort in July 2019, ordered a lip biopsy to check for Sjogren’s Syndrome (the gold standard test for SS) and sent the report through to my Dad’s GP.  The GP couldn’t make head nor tail of the histology report, but as the neurologist said in her letter that the result showed “mild inflammation” my Dad was referred to a Rheumatologist for further consultation.  We saw him in October, but he hadn’t been sent the histology report.  He ordered a load of further tests which all came back normal and we waited, and waited, for a follow on appointment.  In the last 3 months I’ve rung his secretary twice to ask what the hold up is and she just kept saying they hadn’t received the lip biopsy report, so I told her to bloody well chase it up.  Then last week my Dad gets a letter from the Rheumatologist to say he still hadn’t had a copy of the biopsy report, but as all the other tests were negative he was discharging my Dad from his Clinic.  WTF?!

The same day, I rang the RVI and it took less than 3 minutes for them to email me the biopsy report, so why the hell the Rheumy’s secretary couldn’t have done that is anyone’s guess.  And the report shows “focal lymphocytic sialadenitis; focus score = 1” in other words it is absolutely positive for Sjogren’s Syndrome, or possibly the blood cancer lymphoma which we already know my Dad has a marker for.  I am LIVID.

Livid that this was done 6 months ago, yet for some reason the neurologist has called the result “mild inflammation” when it’s nothing of the kind.  Livid that my GP didn’t bother to Google the result if she didn’t understand it, and realize it was positive for SS.  And livid that the Rheumatologist would discharge my Dad from Clinic without bothering to get hold of the biopsy report first.  These people get paid tens of thousands of pounds each year of my tax money to do their job – I shouldn’t have to be doing it for them.  Needless to say, I sent a very sarcastic letter to all 3 health care providers and requested an urgent appt to discuss.

My Mum’s been having some stomach issues lately, so on New Year’s Eve I sat for 2½ hours in the hospital waiting for her to have an endoscopy, which in the end had to be halted mid-way through as Mum couldn’t breathe due to her severe COPD.  She went back on Tuesday to have the test repeated, but this time they put her on oxygen and it was much better.  Thankfully nothing sinister was found, though there was a large area of inflammation which was biopsied and we’re now waiting to find out if she has h-pylori, which can cause ulcers and needs a course of antibiotics.

I’m so fed up of hospitals I can’t even tell you.

In amongst all of the above, I’ve been trying to sell my house and buy a knackered bungalow – more on that in my next post!

 

Kudos!

When I’ve made a mistake I’m the first person to hold my hand up and say “I’ve boobed” and it seems I’ve made a huge mistake in judging WordPress harshly.  I said recently that the Powers That Be wouldn’t give a crap about my blog or the fact their advertising strategy was making it difficult for my readers, but I was wrong.  Public apology to WordPress.

Not only did I hear back from Matt, founder of WordPress, when I emailed him recently about my problems, today I’ve had a comment here on my blog from co-founder Ryan Boren – awesome 🙂  Ryan is autistic and disabled and totally gets my frustration regarding the advertising, in particular being hijacked by flashing or moving images, and has promised to look at the situation.  It’s reassuring to know that someone cares, though I’m sure the fact he will sadly have faced many similar situations in his own life has contributed to his empathy and understanding.

Here’s hoping Ryan and his team can find a solution.  Let me say again that I am not against advertising per se.  We all have to make a living and there are a lot of people going to a lot of effort to provide WordPress.com freely for us to use and enjoy and advertising is the price we pay.  However, making the site available for all users regardless of disability by not placing adverts actually in amongst blog posts (the end or side menus are fine) and being able to disable any flashing or moving images, or even worse for someone with a brain like mine those ads which suddenly play music or speak which sends my entire nervous system into meltdown, would be The Bomb (before anyone asks, yes I have heard of Adblock Plus and use it virtually everywhere online – I rarely get hijacked by ads when it’s enabled.  However, it can and does disable certain aspects of some websites which then make them impossible to use – if you enable it on WordPress, for example, it blocks all the sharing buttons and like counts and follow-me popups).

I’m sure a solution can be found and am hugely grateful that Ryan is willing to help 🙂

Kind but not a solution

As you may remember, I wrote a post recently regarding adverts here on WordPress and how flashing/moving ads can be a real problem for those of us with brain issues or photosensitive epilepsy.  In addition, including ads between paragraphs increases the pain of scrolling for those of us with hand and/or energy symptoms or makes it difficult to use a text reader. Because of these issues I’d been forced to pay for an advert-free site simply to make my blog disabled friendly, a situation I was (and still am) angry, frustrated and sad about.

I contacted the founder of Automattic, Matt Mullenweg, about the problem not expecting any kind of response because he must receive a million emails a week from whiny people on all sorts of issues, so imagine my huge surprise when this morning I received a reply to my mail 😮  Not directly from Matt, obviously, as he has a legion of staff but from a very nice customer relations person who has refunded me my upgrade fee of £36!  I’m genuinely delighted but honestly, and I say this from my heart, I would have been happier to pay the goddamn fee and for them to tell me they would investigate the problem and solve it for brain-injured people everywhere.  For them to tell me that making WordPress disabled friendly is on their radar.  Even, dare I say it, a priority.

When you’re healthy you don’t give disability a second’s thought, and on the rare occasions it might fleetingly enter your consciousness you probably think “awww, poor things” and then go about your day.  But we are not cute kittens.  We are human beings who have as much right to participate in the world as anyone else, we just might need some accommodations in order to do so, and that includes not forcing us to pay money so that we don’t have a seizure from using a product.  This is our legal right, not to mention a humane one.

So I wrote back to said lovely customer relations person and asked if they could raise the issue of troublesome advert content and placing as a matter of urgency with the Powers That Be.  The really sad part is that I know from past experience with all manner of businesses it won’t happen.  Nothing will change and this time next year I’ll be faced with the same bill to keep my blog advert-free (the nice customer relations person said as much in their mail to me).

The refund is a kind gesture, but it’s not a solution and we need more solutions which allow disabled people to participate in the world.

 

 

Weekly roundup

I’m going to apologise in advance for the next 6 months, when I doubt very much there will be any medical mid-week blog posts.  With everything going on move-wise, and after moving renovation-wise, I know for a fact I’m barely going to have the energy to eat let alone write fun or interesting articles (or miserable or boring ones come to that 😉 ).  I hope you’ll forgive me and stick it out until I am happily living in my forever home.

Speaking of which my cousin, who fortuitously happens to be a builder, went out for a look this week.  I gave him the plans for the renovations, he asked my budget, I told him and he burst into hysterical laughter.  “Not a chance!” were his exact words.   I appreciate my budget is tight, however I’m not building fucking Graceland and he’s just going to have to get it done for the money I have.  Or else he’s dead to me 😉  I am getting a second quote from a builder who has been renovating the house next door, so we’ll see whether blood really is thicker than water!

That was on Thursday and to be honest I came home massively deflated.  I’d been nothing but excited about the new house until then, but it suddenly dawned on me just how much work is involved and the thought actually gave me an anxiety attack.  Of course, that left me feeling as weak as a kitten, ridiculously brain fogged and horribly nauseous.  I only managed 3 hours sleep that night and was starting to wonder if I’d made a humongous mistake.

Saturday morning I woke early and immediately my stomach was in knots and I felt dreadful.   Got up for a pee……………….and I’d started my period 😮  Oh well, at least that explains why I’d been so anxious, nauseous and why my stomach felt like it had been karate kicked!  I’m still stressed, but it’s nothing like it was a few days ago so I’m putting much of my physical and emotional state this week down to my hormones,  I’d reached day 60 of my cycle so was gutted to, yet again, have a visit from Aunto Flo.  FFS is that bitch never going to leave?!!

Other than that I haven’t been up to much, though I did attend my camera club for the first time in about 2 months on Weds.  They’re a lovely bunch of people and I wish I currently had more time and energy to devote to all things photographic, but I don’t and that’s just the way it is for now.

I chased my Dad’s rheumatology follow-up appointment regarding his suspected Sjogren’s Syndrome only to be told the rheumy didn’t want to see him again, which means he doesn’t have Sjogren’s.  FFS.  Again.  So it looks like we’ll be back to neurology at the RVI where I know for a fact they’ll now class my Dad’s severe neuropathy as “idiopathic” – in other words they have no shagging clue what’s causing it and he will consequently receive zero treatment.  T’rific.  However, the good news is he drove the car again today, less than 6 weeks after his hip replacement and took Bertie on a little walk for the first time in 18 months!  He’s doing brilliantly for an 80 year old and I’m dead proud of him 🙂

Well, the land of nod is calling so I’ll love you and leave you.  I have to be at the house for 8.30am in the morning as my cousin the builder is bringing round a plumber to quote for putting new heating pipes in.  Crack of goddamn dawn – there’s no need for it!

 

 

 

Weekly Roundup

It is week 5 of my cold virus and, although my runny nose has finally dried up, I’m still coughing.  It’s making me grumpy and irritable and I tell it to fuck right off twenty times a day 😉

Despite my Mum’s endoscopy appointment being for 9am on New Year’s Eve we still waited a whole hour before she was called in for her pre-test checks and were there over 2 hours in total.  It isn’t physically possible to be running an entire hour late at 9 o’clock in the morning, so one can only assume the way the department is run leaves a lot to be desired.  I know when my Dad had his endoscopy it took 4½ hours, 3½ hours of which were spent sitting in the waiting room.  The upshot of Mum’s endoscopy was that it had to be halted mid-way through because of a drop in her oxygen levels (having half a lung and a humongous tube down your throat will do that to you), so we’ve got to go back and have it done again.  Oh joy.

Speaking of my Mum, we had a conversation in the car about menopausal hormones and how they can make you irritable.  “You were really nasty when you first started going through the menopause” she tells me, “I recognized it from when I went through it”.  Er, no, Mother.  I shouted at you because I was on the verge of a nervous breakdown because you are an alcoholic and were drunk every day by lunchtime, leaving me to run your life, my Dad’s life, your home, my home and my own life all the while suffering from 3 serious and disabling diseases!  I didn’t say that, though, because she was on her way for an endoscopy and I didn’t want to upset her.  This is the extent to which addicts are in denial.  They can’t see that their behaviour affects anyone but them and are unable to take responsibility for their situation.  I’m still seething about her comment a week later – pointless I know, but I’m only human.

I received the vet’s bill for Bertie’s tooth cleaning, blood test and dewclaw removal this week.  £400 ($523).  Arrggghhhh!  He wasn’t even in a day, let alone overnight.  And before anyone asks why he isn’t insured, he used to be.  I paid £19.50 a month until the insurers discovered he had a slipped disc and they demanded £179 a month instead.  Fucking robbers.

Things are starting to move with the house sale/purchase and I’ve received a ginormous wad of paperwork to fill in from my solicitor.  Several people have asked that I do pictures of the bungalow renovation, so I’ve set up a separate blog for that – I’ll let you know when I start posting!  I seem to be the only person excited about my house move – everyone else thinks I’m mental for taking on such a massive project, which is starting to get to me :-/  It’s happening, I’ve done my research, survey, costings and plans and it’s not like I haven’t done houses up before (admittedly not this level of renovation but still).  I’m not clueless or naive, so I wish they’d just get on board and be supportive.

My elderly, disabled friend who I called an ambulance for when he fell out of bed bought me a new hoover for Christmas 😮  He’s not short of a bob or three so £300 isn’t anything to him, but it’s a big deal to someone on my income and I’m incredibly grateful.  It’s a lightweight, cordless, stick one and doesn’t kill my back like my big, clunky Dyson – important as I’m still currently sans cleaner.  You know your life is a huge pit of excrement when you get excited by a hoover.

Well, I’d better get up and get my arse in gear.  I’m meeting my bestie for lunch today in the city, which I’m very much looking forward to, and am fairly sure it wouldn’t be acceptable to rock up in my jim jams and fluffy bedsocks with the hole in the heel 😀  But first I have to walk the mutt.  He knows the route with his eyes shut, so why he can’t just take himself off for a wander and leave me to have a lie-in is beyond me, the selfish article.

 

A new decade begins

I’ve survived another Christmas, which is no mean feat when you suffer from M.E.  I’ve had my cold for 2 weeks now and am still coughing, still blowing my nose twenty times a day and what little energy I ever possessed has done a bunk, but I’m managing to take the dog out and do the bare essentials so it could be worse.  My Mum has only been so drunk on one day it’s irritated me which is an improvement on previous years, and my Dad is doing so well following his hip replacement he is now walking a mile a day – he hasn’t been able to go out for a walk for two years and is like a different person now he can get out and about again 🙂 .

For many, New Year is a time of both reflection of the year past and contemplation of the year ahead.  Looking back on 2019 it is one of the busiest years I’ve had since becoming ill and has not been without its challenges.  I have:

  • Fought for health care for my Dad, literally all year.
  • Despite the fact the furthest I ever usually drive is 7 miles into town, I made nine 180 mile round trips to the RVI in Newcastle.
  • I also made four 140 mile round trips to Hexham General.
  • And four 180 mile round trips to Sunderland Eye Infirmary. I have no clue how I managed any of it, as I often had a migraine and could barely see and my back and hips were so painful by the time I got to where I was going I could hardly walk.
  • Cared for my Dad after he had his hip replaced.
  • Cared for my dog after an operation.
  • Helped an elderly, disabled friend move house, then spent 3 months helping him unpack.  I also probably saved his life after finding him feverish, hypothermic and with an irregular heartbeat on the floor of his home after falling out of bed.
  • Made a 3 hour return journey up into Scotland to take part in EDS research only to be told I wasn’t eligible :-/
  • And I am finishing off 2019 literally as I started it, sitting in a hospital waiting room on New Year’s Eve waiting while my Mum has an endoscopy!

It has also been the most successful and fulfilling year of my sick life, and also one of my happiest.  I:

  • Won 2 trophies in an annual, northern, regional photography competition.
  • Had an image chosen for a Wildlife Trust calendar for the 2nd year running.
  • Was exhibited in a central London Gallery 300 miles away, which I attended even though the furthest I ever usually travel is the 7 miles into town.
  • Became a double Master of Print.
  • Was guest speaker at two Camera Clubs, one of which was a 120 mile round trip away in Scotland.
  • Won 8 international gold medals, beating off competition from all over the world.
  • Was awarded 2 further photographic distinctions. I can now use the letters AFIAP DPAGB BPE1* QPSA after my name!
  • Was awarded a £1800 camera by Sony after they chose my picture as their favourite in a competition.

It has also been monumentally life changing because:

  • I sold my house.
  • I bought a mouldy, knackered bungalow which will be my forever home.

And y’know what?  I did all of the above while going through the Menopause on top of everything else I deal with.  Go me 😀

It amazes even me that after 26 years of devastating ill health I still have the enthusiasm and drive to live my best life despite huge limitations, very little help and if I’m honest being petrified most of the time!  The human spirit is a vast, unfathomable and wonderful thing and when I’m struggling, feeling overwhelmed or utterly exhausted I always ask myself if I were told tomorrow that I had 3 months left to live how would I feel?  It’s a reminder that each day is precious.  I’m so thankful to my body for seeing me through the past year and am excitedly looking forward to 2020.

I hope the next twelve months hold everything you wish for yourself, and when life throws its inevitable curve balls you have the strength to catch the ball and throw the bugger back!

Happy New Year, with love from Jak & Bertie xx