Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

Tomorrow I find out whether the next chapter of my life begins………..or not.  It’s the biggest thing to happen to me in 16 years, so please send some positive vibes out into the Universe that it goes the way I hope.  I’ll do a post on the outcome when I know.

This week has been spent mainly helping my parents.  My Mum is chocka with cold which has inevitably gone to her chest (she has half a lung, emphysema and severe COPD).  She has emergency antibiotics at home so started them early, but they make her nauseous and give her the runs so she’s pretty miserable and feeling really unwell.  My ‘nice’ neighbours both have the same lergie, as does my dog walker, so it seems like a pretty virulent bug :-/

My Dad is doing OK after his hip operation and subsequent huge bleed and is managing to walk outdoors for short distances.  He had 34 staples taken out of his leg on Friday and the wound is healing well.  His leg is swelling badly every day though and since the staples came out he says he’s getting severe pins and needles, so if it’s no better tomorrow I’m going to ring the post-surgery helpline number at Hexham to see if that’s normal or not.

Bertie also had his stitches out on Friday following the amputation of his rear dewclaw.  Unfortunately there is little skin to cover the wound so it will take some time to scab over.  I did notice a bit of puss last night, so put some Germolene on and covered it with a dressing, which I’ll change twice a day for the next few days to see if I can get on top of the infection.  Not sure if you’re supposed to put Germolene on a dog, but I’ve been doing it for years and as long as you cover it so the dog can’t lick it off and poison itself it seems to be as effective on mutts as it is on humans!

Other than that I’ve been trying to keep on top of housework/cleaning/laundry.  I am running on empty now and have told my folks I’m having 10 days off over Christmas to recoup my energy (famous last words!).  Despite everything I am miraculously ready for Christmas though – cards are sent, presents are bought and wrapped and Boxing Day lunch at a hotel is booked (we don’t do Xmas day lunch, we’re all too ill).

I felt sick last night with a mixture of nerves and excitement so didn’t have any tea.  Consequently, I’m starving this morning and ready for an early breakfast.  Then I’ll take Bert out before meeting my disabled friend D for brunch in a local cafe.  Tomorrow I’m taking both my parents all the way to Sunderland for checks following their cataract operations, while also trying to juggle my life changing (or not) event.  It’s going to be a big week and by the end of it I could either be stupendously happy or stupendously depressed – watch this space.

 

 

It’s life, Jim, but not as we know it

I had brunch with my friend D recently.  He’s 75, widowed and severely disabled.  We were talking about porridge and how I sometimes just have a bowl of it for my tea in the evenings as I have my main cooked meal at lunchtime.
“What kind of porridge do you use?” D asks.
“Quaker Oats So Simple” I reply, “it takes 2 minutes in the microwave”.
He pulls a face.  “Eugh, I only like porridge done properly in a pan”.
I roll my eyes.

Does he not think that I’d prefer proper porridge made in a pan?  Pan porridge compared to microwave porridge is the difference between sirloin steak and cheap mince!  However, pan porridge takes 5 minutes during which time I actually have to stand up, then there’s a god-awful sticky pan to deal with afterwards, whereas I microwave my quick porridge in the bowl I eat it in and it’s ready in 120 seconds.  When you are sick and lacking energy choices have to be made.

We then talked about what else we eat in a day.  He tells me he goes out to a greasy spoon cafe most mornings and has a fry up, then eats nothing else for the rest of the day bar some toast or fruit in the evening.  He’s diabetic for heaven’s sake and has been found to be low in both iron and B12 which is probably one of the reasons he’s absolutely exhausted all the time.  So I arrange for a Wiltshire Farm Foods brochure to be delivered, which he doesn’t even bother looking at.  Someone else arranges a visit from the Meals on Wheels service.
“How did that go?” I ask.
” I discovered they’re made in a school kitchen!” he says, horrified.   Eugh!  I’m not having meals made in a school kitchen”.
Well eat nutritionally defunct food and feel like crap all the time then, I felt like saying.

We then get on to the subject of kitchens.   He’s recently moved house and needs a new kitchen installed.  I suggest a quality firm in town, who will send a rep to his house to measure up and I’ve already picked up all the brochures for him to choose the units, worktops, taps and tiles.
“Have you decided on the units?” I ask him.
“Yes, but I need to contact a company in Durham regarding the worktops.  We had these lovely granite ones with a copper streak in when we lived in Cheshire and I’d like those.  They have to make a template up in wood, then they carefully lay the worktop over that – they have to be soooo careful as it’s really delicate and can break while they’re fitting it.  I’m sure the rep will come over to advise and measure up.”
FFS.  His kitchen measures 8ft wide by 12ft long and he’s 75 fucking years old.  Why on earth would he make life hard for himself by getting some firm 90 odd miles away to come and do him a couple of bespoke counter-tops which will take months and cost a small fortune?!  The thing with him is, he still thinks he’s putting a Miele kitchen into a 30ft award winning barn conversion like at his old house.  But he’s not.  That life has gone now and he’s living alone in a small disabled-friendly bungalow.

I find this a lot with both old and sick people, my own parents included.  There is a stubborn refusal to adapt to changing circumstances, or any acceptance that our lives are no longer what they once were.  It’s particularly apparent at this time of year.  We see all the adverts for perfect Christmases on the telly and we want a part of it.  Before I got M.E. I used to make mince pies from scratch, invite all my friends over for dinner the week before Xmas, make a day of choosing a real tree, wrestling it into a bucket of water and decorating it from scratch (then spending an hour hoovering up rogue pine needles), buy everyone and his dog presents which I’d spend hours immaculately wrapping complete with matching ribbons, tags and bows, and send over 100 Christmas cards, not to mention making a couple of trips to the beauty salon to get my nails done and my hair coifed read to paint the town red.  Then I got sick and everything changed.  I can’t remember the last time I went to a beauty salon, I bought a fake pre-decorated pre-lit Xmas tree in the Boxing Day sales one year which I get out of the shed each December and simply plug in, I buy my mince pies from Booths, culled another 5 people off my Xmas card list this year which brings the numbers down now to 36, and not only do I invite no-one over for dinner I won’t have a single visitor to my home for the entire festive period.

For all the years I was bedridden I, of course, didn’t have the energy to have a Xmas tree of any description, and being as though no-one offered to put one up for me I used to hang a couple of baubles from a little palm plant in my bedroom.  I really enjoy Christmas and if that was the only way I could take part then so be it.

We have 2 choices when we get sick.  We either deny ourselves any kind of pleasure because it’s not perfect or what we’re used to, or we can make the most of what we’ve got, even if it’s not perfect or what we’re used to.   Twenty six years down the line do I still yearn for my old Christmas back?  Of course I do, but it won’t stop me from sitting in my pink rocking chair by the fire on Christmas Eve, with my Xmas tree lights twinkling, reading a favourite book and being grateful for what I have.

No-one understands more than me how hard it is to let go of the life we’ve dreamed about, but torturing yourself over things you can’t change is utterly pointless and killing yourself trying to do things the way you always have is a recipe for disaster – instead of enjoying Christmas you’ll just be in a sick, exhausted heap on the kitchen floor at best, or bedridden at worst.  Not celebrating at all isn’t the answer either.  If, when I first became ill, I’d said to myself “Christmas isn’t the way I want it to be so I’ll just not bother” I would have had 26 years of no Christmas at all – how depressing is that?!

I spent 10 years without Christmas.  I was too ill to get dressed, put up a tree, had no way of buying gifts (no internet then!) and even if I had I didn’t have the energy to wrap them and writing my cards took me 2 months, so even though the holidays these days aren’t what they were when I was well I cherish them.  I won’t see anyone.  I won’t have a ‘proper’ Christmas dinner (I’m not well enough to cook one and my parents certainly aren’t).  I hardly get any presents.  I’ll spend Xmas morning, and Xmas evening, alone and in the middle I’ll be with my alcoholic Mother.  Due to my HIT I can no longer eat mince pies, drink mulled wine or stuff my face with chocolates.  But I’ll still cherish the holidays.  I am alive, I have family, I have my lovely home and my lovely dog.  I have the energy to get dressed and walk with Bertie in the freezing winter cold, to watch telly or read a book.  I have a sparkly Christmas tree 🙂 And for that I am thankful.

 

 

 

 

 

Weekly roundup

I haven’t been touched by another human being for a decade.  My Mum stopped hugging me when her alcoholism took off, my Dad isn’t a hugger and I don’t have a partner, so my little dog Bertie is the only physical contact I have with another living creature.  Monday he went to the vets for a little operation.  He needed his teeth cleaning but also had a deformed dewclaw removed, which sounds trivial but is actually classed as an amputation because rear dewclaws are attached by bone just like a thumb.  Even though he’s elderly now at 11 and has a heart murmur I wasn’t concerned – he’d had anaesthetic before for his castration when he was little and all went well – so imagine my horror when I went to collect him only to be told they’d had to ring the cardiac specialist during his operation because his heart had been going like the clappers 😮  It had started the second he was given his pre-med, so I’m assuming he had an allergic reaction to the drug.  Thankfully he pulled through and is recovering well but I swear my blood turned to ice when the vet was relaying what had happened – I simply don’t know what my life would be like without him.

I barely got any sleep Monday night as Bert was in pain and couldn’t get comfortable, so Tuesday I was fairly knackered.  Following my Dad’s hip replacement last Friday, however, my parents are needing much more help than usual so despite my exhaustion I was in town helping them out.  My youngest brother and family have really stepped up to the plate though for which I am truly grateful and are making them meals, getting my Dad his newspaper each morning and going for prescriptions etc.  My elder brother and family haven’t even been to visit, despite living only a few streets away :-/

Weds I went to visit a friend as she has been having awful problems with her 9 year old daughter, who’s suddenly developed severe anxiety disorder.  My friend is so worked up and getting so little help that she literally can’t eat or sleep and cries at the drop of a hat, so I popped round just to offer her a shoulder.  I can’t believe in this day and age there are still so few mental health services for children – it’s a bloody disgrace.

Everything caught up with me on Thursday and I felt stupendously MEish.  Despite having a banging headache and spinning vertigo I had to go into town for Bert to have his post-op checkup and when I got back at 4pm I was literally dead on my feet.  Desperate to just get into bed I was accosted by my neighbour, irritatingly saying he’d been trying to get hold of me.  His landline had developed a crackle and the BT engineer needed to check the box on the side of my house which feeds his line, however as he needed to go up a ladder he wanted to drill a hole in the side of my house to secure it – health and safely ‘n all that (it’s a tiny cottage for heaven’s sake, not the bloody Clifton Suspension Bridge!).  I said no.  There are water and gas pipes buried in the wall, not to mention the fact my house is up for sale and the last thing I want is a hole drilling in the outside render which I would then have to fill in and re-paint.  My neighbour stomped off in a  huff and I wearily ran myself a bath, the first time I’d had a wash or cleaned my hair for 6 days!  I hadn’t been in the water 5 minutes when the doorbell went.  It was the sodding BT engineer and before he’d even opened his mouth I barked “I’ve already told my neighbour you’re not drilling in my wall!” and virtually slammed the door in his face.  I got back in the bath but by then the water was luke warm and I was pissed.  I got into bed and cried with exhaustion and the unfairness of not even being allowed half an hour to have a bath without someone wanting something from me.

I’d dozed off watching telly when, at 9pm, my phone went.  WTF?!  It was my Mum to say my Dad’s leg had swollen like a balloon and there was a bruise the size of a grapefruit behind his knee.  I had no clue what to do.  The hospital had given us a post-surgery helpline number to ring so I tried that, but it was only open during office hours – useful!  So I rang the ward at the hospital, but the nurse said unless she could see it she couldn’t advise us and told me to ring the non-emergency NHS number 111.  It’s fucking useless.  I tried to ring it last month when I found my disabled friend on the floor having fallen out of bed, but after being on hold for 40 minutes gave up and rang 999.  This time, after being on hold for 20 minutes I also gave up and went online to fill out a form which gave me no opportunity to actually describe what was happening.  Luckily, though, the minute I wrote my Dad was on the blood thinner Warfarin it told me I needed to see a Doctor and I was allowed to request a call back from a medic.  Without even seeing him, the Doctor told my Dad “you should be fine” (reassuring, not!) and to see his GP in the morning.

So at 8.30am Friday morning I spent 20 minutes on hold trying to get a GP appointment.  They were short-staffed due to sickness, so in the end he had to see a nurse who didn’t really have much clue what was going on and removed his dressing to check his wound, even though we’d been told at the hospital not to do that under any circumstance :-/  He was sent home after being told it was all “normal”, despite the fact no-one could tell him why he’d suddenly had a massive bleed from his thigh to his calf a whole week after his surgery.

I was awake most of Friday night with a thumping, sickening migraine which made my right eye bloodshot and the right side of my face swell up.   Of course I was.

Saturday I contacted my bestie and said if I didn’t speak to someone who wasn’t a) old, b) crying or c) furry soon she would be visiting me in the local mental asylum and, bless her, despite being really unwell herself she drove 45 minutes down the motorway to meet me for lunch and spent the first hour listening to me offload.  I’d do a heart emoticon, if I knew how to do that in WordPress!

It’s Sunday today and after taking Bert out this morning I want to put my Christmas tree up.  I haven’t even given Xmas a seconds thought and am now panicking that there is only a fortnight to go and I haven’t even bought my cards yet, let alone written or posted them.  I’m sure everyone would understand if I didn’t do Xmas this year, but I actually love Xmas (well, I would if I didn’t have to spend any time with my drunk Mother) and putting my tree up is something I’d like to do for me.  I’ve treated myself to a lightbox for Christmas to photograph flowers, but have decided I’m not waiting til 25th and am going to try it out this afternoon – I think I’ve earned a treat.

p.s. after my meltdown to the Blue Badge team I receive an email from them to say my renewal had been successful – they probably feared for their lives if they refused me 😉

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 😀

Weekly roundup

Mr Sod and his Law have made their presence known this week.  I’m guest speaker at a Camera Club on Wednesday evening and have gone down with a raging throat infection.  My left tonsil is huge and I want to gag every time I swallow 😦  I also have a headache and feel generally bleugh.   WHY NOW FFS?!!  I have no clue how I’m going to talk for 2 whole hours.

My 75 year old, disabled friend who fell out of bed last week was discharged from hospital less than 24 hours later.  He was admitted with a fever of 101C, a chest infection and abnormal heart rhythm (he’s already had a heart attack, has a stent fitted and has angina).  He spent 12 hours in A&E, without any food despite being diabetic (he’d barely eaten for 3 days), and was eventually placed on the acute admissions ward at 1am.   He was given IV antibiotics, there were no beds, so at noon he was asked if he wanted to go home.  “Yes please” he says, because there isn’t a person alive who actively wants to be in hospital.  So they whipped his drip out and sent him home.  Alone.  With no carers or any other help in place.  I was fucking livid.

I met him this morning for our weekly brunch at a local cafe.  He looked awful and had apparently fallen asleep in the car in the car park.  He only lasted til 11am before telling me he had to go home because he was exhausted.  I’m going to ring his GP surgery tomorrow and speak to his doctor because something is clearly not right and men are hopeless, on the whole, at telling doctors what’s really going on.

Aunt Flo paid me a surprise visit this week and it was most unwelcome.  I had my last period 132 days ago and had thought I was well on my way to full menopause, to the point where I’d chucked out all my sanitary wear, but obviously my ovaries have other ideas.   I’m now consulting with my solicitor to issue my hormones with an eviction notice.

On a more serious note, for the past few months I have had god awful nerve pain in my legs.  Both shooting, electric shock type pains and more general heavy achiness from the knees down on both legs.  I’ve had continual back and hip pain for years so thought it was coming from there, but the day my period started the nerve pain almost disappeared!  Very odd.  It is still present, but has gone from maybe a 8/10 to a 3/10 and for that I am truly grateful.

I made a complete and utter arse of myself this week.  I have a gas fire that works from a remote control.  A couple of weeks ago the knob which turns the flame up and down started to get really stiff, so on Tuesday I called out the gas engineer to take a look.
“Have you tried new batteries?” he asks.
“In the remote control y’mean?  Yes I have” I reply, smugly.
“No, in the fire”
I look at him puzzled.  “Didn’t know there were batteries in the fire” I admit, turning crimson.
So he pulls a black box out from under the fire, slides the back off and shows me 4 x AA batteries.  “If you haven’t changed these in 8 years I’m fairly sure that’s the culprit” he tells me, trying not to laugh.
And sure enough he changes them and the knob works perfectly.  That little lesson in being a complete airhead cost me £50.  FFS.

Wednesday I made it to my camera club.  I haven’t been for a month as I’ve other things on so it was nice to be back.  It’s a much more relaxed club than my old one, with younger members and more light-hearted banter but although some of the older members make a point of talking to me none of the women my own age do.  They all just sit in a group together and don’t even look in my direction, which is a bit shit and I don’t feel all that welcome.

Yesterday I had coffee with a couple from my old camera club.  They’d contacted me out of the blue to suggest meeting up and I was really touched they wanted to stay in contact.  I didn’t even know them that well as they’d only been at the club for one season, but we had a lovely couple of hours catching up and it was nice to know that at least some of the members were missing me.

Well, it’s time for another salt water gargle (eugh!) and a honey and lemon tea.  I’m resting up for the remainder of the day and having a binge fest of Love Island  Australia on catch-up.  Thank God I’m no longer in my twenties and feeling pressure to find my soul mate – it all looks like far too much hard work and disappointment and makes me happy I live with my dog and not a bloke 😉

 

HEDGE study day

A fortnight ago I went up to Edinburgh to take part in the HEDGE study, which is recruiting 1000 patients from America, Britain and Europe in order to try to establish the gene(s) responsible for Hypermobile Ehlers-Danlos Syndrome.

By the time I received my invitation there were only early morning slots available, so I chose the latest one which was for 10am.  It takes about 1hour 40 mins to get from where I live in the north of England to Edinburgh, so I caught the 8am train.  This meant I was up at 5.30am (it takes a good while for my joints to ‘thaw out’ in the mornings so I need time for this to happen), had breakfast and got dressed, put a packed lunch up, got myself and the dog in the car, walked the dog in the dark, dropped him off at my parents’ house then recruited my 80 year old, disabled Dad to take me to the station in his car to avoid astronomical parking charges.  By the time 8am, and the train, arrived I was buggered and the day hadn’t even started yet!

Although marginally better at travelling on trains than in cars, I still find it an ordeal.  My nervous system is high as a kite at the best of times, so when the train pulls out of the station it shouts at me in a very loud voice “what the FUCK is happening?!” as it tries to cope with the swaying and vibrations.  My entire body buzzes like I’m being electrocuted and my brain feels like it’s swishing about in my skull, the effect of which is to make me as dizzy as a kid on a roundabout and twice as disorientated.  It didn’t help that I was facing the early morning sun which flashed as it disappeared behind every tree on the banking and inevitably led my light-sensitive brain to develop a migraine before we’d even reached Carlisle.

The testing was being carried out at the Royal College of Physicians, which is luckily only a 5 minute walk from the station.  I arrived at 9.50am and only had a short wait before I was called in to see an American lady who took me through the consent forms etc.

I was then shown in to see an American physician.  She introduced herself but I was so spaced out I have no clue now who she said she was, but she was lovely and immediately put me at my ease.  She explained all participants in the study had to conform to the 2017 definition of hEDS so that the study was based on identical symptoms, which is of course completely understandable.

We then went briefly through my medical history and I was quickly examined.  The appointment went belly-up at this point.  When I was diagnosed back in 2010, my Consultant explained that I did not fulfil the Beighton Score criteria.  I’ve never been able to put my thumb to my wrist, for example.  However my wrists are clearly hypermobile, they just bend in the opposite direction from that listed on Beighton, therefore my Consultant still scored me.

Beighton score wrist & thumb hypermobility

My hypermobile wrist not on the Beighton Score

Photo of hypermobile thumb

My hypermobile thumb not on the Beighton score

The HEDGE Physician explained that, in a clinical setting, she would still give me 2 points for the hypermobility of both wrists however the study has to stick rigidly to the Beighton Score and because of that I was awarded 0.  Here begins my first gripe with the current diagnostic criteria.  It is absurd to award me zero points when I’m clearly hypermobile.  Why on earth the Beighton Score wasn’t updated when the diagnostic criteria were re-designed in 2017 still baffles me and even the Physician agreed it needs to be re-examined.

On to my fingers.  I am now 52 years old and Menopausal.  While I am still more flexible than the general population most adults, as they age, stiffen up and hypermobile people are no exception.  On top of the normal stiffening of age we also have decades of trauma to contend with, which causes chronic pain.  My hands are now really quite sore, to the point where I can’t take the tops off jars or cut up dense food.  I was asked could I bend my pinky fingers back by 90 degrees, as per the Beighton Score.  “I used to be able to” I say, “but these days they’re just too sore and stiff”.  Another zero is added to my tally 😦

Beighton Score: 1 point each pinky finger

Photo of hypermobile finger

My hypermobile pinky finger

And so on to my back, which has been painful since I was 11 years old and is currently absolutely killing me and my hips which are even worse.  I was asked if I could place my hands flat on the floor with straight legs, my answer to which was also that I used to be able to but these days it’s a definite no no.  I accumulate another zero, despite the fact I could do the splits until I was well into my thirties.

In the end I scored a borderline 4/9 on the Beighton Score (my original diagnostic score was 8/9) and this is where I got miffed, though I didn’t say anything – it’s not the physician’s fault!  Ever since I was diagnosed with hEDS I’ve realized that the emphasis is on children and young adults  (and by young adults I mean under the under 40s).  No-one wants to know about older adults and definitely not about the elderly or what happens after the menopause.  We’re written off.  The attitude seems to be that the damage has been done by the time you’re 40, so what’s the point in studying us oldies?  What does anyone hope to gain?  An understanding of how age affects us, I would have thought, and ways in which not only our symptoms can be effectively treated but how our issues could be avoided by the younger generation!  It makes my blood boil if I’m honest.

The 2nd section of the 2017 diagnostic criteria deals with issues other than hypermobility.  I was asked do I have Piezogenic foot papules, to which I could answer a definite “yes”.  Only the physician said there weren’t enough of them – how many does one need?!  I can see 5 on the inside of one heel alone!  I scored zero, though I’m not sure why.

Photo of piezogenic papules

Piezogenic foot papules

I was then asked if I had any atrophic scars, the answer to which is also a resounding “yes” as I had spinal surgery as a teenager.

Widened, atrophic, cigarette paper scar

“Is that the only scar you have?” I was asked.  No, but it’s the only major scar I have.  I do have one on my forehead from when I fell as a 3 year old and banged my head on the kitchen chair, but as it’s 50 years old it’s quite faded now.  Again, I scored a big fat zero as you need two scars to qualify, even if your one humongous scar is clearly atrophic.  FFS it’s ridiculous.

The next question related to stretch marks, of which I have none.  I’ve never been pregnant, you understand, or overweight – the two main reasons why anyone would have stretch marks (my Mum’s stomach and bum are covered in them from her pregnancies).  Again I scored zero.  Not only is the 2017 diagnostic criteria discriminatory towards older people, it’s also discriminatory towards child-less people too!

“And have you ever had a prolapse?” the anwer to which was also no, thank God.  Y’see, prolapses are usually events which happen after child-birth, or in women over the age of 65, neither of which apply to me (although they can also be caused by long term constipation).  More discrimination of middle-aged, child-less women, not to mention men.  I would honestly love to know the proportion of average weight, child-less patients who fulfil the stetch-mark and prolapse criteria.  In order for criteria to be diagnostic they surely have to apply to the majority of patients and I’d kill to know the statistics in child-less women, and of course men, because I’d bet my house on these two symptoms applying to very few.

I knew I would fail the 3rd section of the criteria, which insists on a closely-related family member also having an EDS diagnosis.  Now this really is discriminatory.  What if you’re adopted?  Or your parents died young?  Or you’re a refugee or immigrant whose parents are still abroad?  Or, like me, you’re simply not in touch with one side of your DNA family?  I do still have my Mum, who has all the signed of both hEDS and MCAS, but she’s 79 years old and in very poor health and has absolutely no intention of trying to get diagnosed with hEDS (which is hard enough for young people and, as discussed above, almost impossible for the elderly).  Needless to say I failed the 3rd section in spectacular fashion.

I have some issues with the 2017 criteria, in case you hadn’t guessed 😉

The upshot of the appointment was that I didn’t qualify for the study.  All that effort, not to mention losing £50 in train fares (no expenses were provided) and having to wander Edinburgh for nearly 2 hours in the rain, dizzy, in pain and disorientated, waiting for my train home.

I wish the study every success.  We clearly need to know the gene(s) responsible for our disease.  However, I wonder how many hEDS patients are being excluded when they clearly have hEDS and how representative the actual results will be?