Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

I have been so naughty this week.  I’ve got the most intense cravings going on, so I caved and have chomped my way through a whole tube of sour cream ‘n onion Pringles, a family bag of Starburst, a family bag of Wine Gums, a frozen mushroom pizza (my first bought tomato-based pizza in 5 years) and a small tub of Salted Caramel Haazen Dazs ice cream.  I’m sure none of that has done my histamine bucket any favours and I’ve probably gained 5lbs but I swear my hormones thanked me and I loved every second of my binge 😉  Fuck it, you only live once and it’s not like the sky fell in or anything.

Tuesday night was the last evening of our beginner’s photography class so I hauled my exhausted arse along to show support even though I wasn’t lecturing.

Wednesday I decided to spend half an hour in a wildflower meadow taking selfies for a photo I had in my head.  Stupid here forgot to put her insect repellent on though and I’ve spent the days since covered in huge blistery, itchy bites.  The photo turned out OK though so that’s the main thing 😀

After having 6 weeks off to nurse her Father who has now passed away, my cleaner didn’t come again this week as her daughter had a hospital appointment.  I know they’re all legitimate excuses but when is she going to realize that the reason I have help in the house is that I‘m sick?!  If she worked on the tills in Tesco she wouldn’t have been given 6 weeks off, dying Dad or no dying Dad.  When my Nan passed away my Mum had one day off her 40 hour a week job for the funeral and that was that, even though she’d been taking turns to sleep on my Nan’s couch for 3 months beforehand to nurse her.  We all have stuff going on in our lives but the world doesn’t stop turning and we still have to work – she’s only here 3 hours a week for heaven’s sake.  Maybe that sounds harsh, but including holidays she’s had nearly 7 months off in the last 18 during which time I’ve lived in a dirty house and slept in a dirty bed and the reason my hand is currently killing me is because I tried to change the bed sheets myself in her absence.

Speaking of which, the only solution I could come up with to help my CMC joint was to tape my hand.  I found some YouTube videos showing the best way to go about it which I modified to cover all the areas which are sore, but I have to admit it’s not helped so I think I’m going to have to see the Doctor *sigh*.

Friday I had the plumber here servicing the gas boiler and fire and fitting a thermostatic valve to one of my radiators.  I also had the builder here quoting to re-grout my patio.  My house needs some expensive jobs doing, like a new front door, but as I’d love to move to a one story house in the not too distant future I’m hugely reluctant to spend yet more money on this one.  I’ve been looking for a new home for a year now though and had no luck so I could still be here in 5 years time and it’s difficult to know what to do.

Today is Father’s Day (why is there no Daughter’s Day?!) so I’m going out to lunch with the folks even though I feel rubbish and am absolutely wiped.  I know I should be grateful that I’m well enough to go out after spending years bedridden, but it’s not like I’m going to enjoy it – my Dad is loopy loo and my Mum will start off whiny and snappy (there is always something wrong with the food) then get increasingly giggly and stupid the more wine she drinks – so to be fair I’d rather be stopping in bed cuddled up to Bert and working on my photos.  Neither of my brothers has ever taken my Dad out on Father’s Day even though he’s their biological Father and not mine.  Why does this stuff constantly fall on my shoulders just because I’m single?

As you can probably tell I’m hormonal, crabby and not feeling well so I’ll shut up now, go and get some breakfast and try to find my happy head.  Onwards and upwards!

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Low patch

On top of my weekly roundup on a Sunday I try and write one blog post a week on a specific topic but the last few weeks I’ve been struggling.  I’m usually a gobby mare who never shuts up but the truth is I’m feeling a bit low at the moment and can’t think of anything to say.

I’ve been lying here pondering what’s really going on and I think I’m just feeling a bit lonely.  As I said in a recent blog post, during the winter everyone else is stuck indoors like me but in the summer it’s very obvious that healthy people are out having fun with their nearest and dearest and the fact I’m imprisoned in bed on my own feeling rubbish really hits home.

I’ve been single now for 10 years and while in many respects I love being on my own the lack of human contact seriously gets me down.  I have not been touched by another person in a decade and we’re simply not meant to live in that kind of isolation.  We have an innate need for physical connection – someone to hug us when we’re upset, someone to hold our hand when we’re frightened, someone to kiss us to share in our happiness.  The absence of that is something you never get used to and can, at times, become an actual physical ache of longing.

It’s bad enough that you have no-one with whom to share your life.  There’s no-one to ring when something great happens, no-one to care for you when you’re injured, no-one to help with chores when you’re exhausted, no-one to discuss Love Island with 😉   But for me the lack of physical contact is the thing which brings me to my knees.

There is no solution either.  I mean, you can pay someone to help with the housework or the garden and I do have my parents and friends I can chat to, but you can’t pay someone to lie and snuggle with you or to sneak up and kiss you on the neck when you’re doing the washing up.   You can’t pay someone to hold your hand while you’re waiting for an MRI scan or to massage your shoulders when you’ve got a migraine coming on.

So I apologise if I’m a bit quiet.  I’ll get over it, it’s not like I have a choice, but just at the mo I’m having a bit of a pity party and the only guests are my rampant hormones which are making me weepy (when are they going to bugger off?!).  I can’t even get drunk and binge on chocolate, which some days is worse than being alone, or dance to It’s My Party And I’ll Cry If I Want To cos my knees are playing up.  Fucking hell my life actually sucks 😀

 

 

Weekly roundup

I spent the first half of the week feeling a bit sorry for myself.  Turns out having your face battered is painful and it knocked me about in general, making me MEish and unwell.  For five days I could only eat soft foods, had to drink through a straw and cleaning my teeth made my toes curl.  Couple that with having my period and I felt proper miserable.  However, a lovely friend from my Camera Club rang me on Monday to see how I was and suggested we meet for tea and cake which was really kind of her and helped me feel less alone.

I had to buck myself up on Weds, though, as it was my Mum’s birthday and we were going out for lunch although first I had to go back to the hospital for my stitches out.  The Doctor had made a really nice job and so far it looks like the wound is healing well, which is a relief considering how uncooperative my skin can be.  Lunch was OK but when my Mum orders a humongous glass of wine it still makes me feel sick inside, though to be fair she is drinking a lot less than she used to.

Thursday I chased her GP up.  Back in April Mum had some bloods done and there were several warnings on the print-out.  Although the Doctor dealt with the acute kidney injury (the result of taking ibuprofen for back pain) she’s never once mentioned the fact that Mum is anaemic (haemoglobin 114 when it should be between 115-165, red blood cell count 3.57 when it should be between 3.8-5.8, haematocrit 0.339 when it should be 0.370-0.470 and red blood cell distribution width 16.5% when it should be under 14.8%).  In Mum’s case the anaemia could be down to two things: her chronic kidney disease or she’s low in iron for some reason, both of which are treatable with drugs or supplements.  Anaemia makes you very tired and can contribute to breathlessness and as Mum is already exhausted from heart failure and struggles to breathe due to advanced COPD I’m really angry that this has been ignored.  Apparently she’s been anaemic since last September when she had Guillain Barre and the Doctor has just put it down to being unwell, but for heaven’s sake that was 9 months ago so she’s ordered another blood test to check her iron levels, B12 and other red blood cell related stuff.  Once again, though, if I hadn’t requested a print-out of her results we’d be none the wiser and her anaemia would be going untreated.

We’re still having uncharacteristically good weather here in the north of England so I made myself do some much neglected jobs in the garden, even though I felt like crap, my right hand/thumb/wrist is still painful and I really didn’t want to.   I do feel good for getting it done but would still rather have been taking photos or simply chilling on my swing seat in the sun.  I fucking hate housework.

I found out who the designer of the couture wedding dress I bought was and sent my two pictures to her.  You never know what might come of something like this and I did hear back from her saying she’d love to work with me!  Considering she designed the outfit for the godmother of Pippa Middleton for the royal wedding this is a huge honour, but sadly she’s in London so it’s not going to happen.  However, she is going to use my photos on social media which gets me exposure.

I also had two sales of my photos this week 😀  A friend bought a large mounted print of one of my wedding dress pictures and I sold a large canvas of a local river on my Redbubble page (which desperately needs updating!).  The sales were a god send as I only had £4.65 in disposable income to last me the whole of June so although I didn’t make a fortune at least I can breathe a little bit!

I’m currently working on an image of a pig and needed a car tyre (don’t ask 😉 ), so at 9.30pm last night I legged it over the wall to my neighbour’s farm and…..erm…..borrowed one from a pile he has stacked in his yard.  Then I panicked in case he has CCTV and I was arrested, so if you don’t hear from me for a while I’m banged up 😉

Time-less

My life is nuts.  There are times it seems incredible to me that someone who has no full-time job and no kids could ever be this busy.  I blame poor time-management skills for constantly being late.  I blame my forgetfulness on my hormones.  I blame my permanent state of mental and physical exhaustion on my inability to sleep well.  But that’s not all there is to it.

There’s a meme doing the rounds on Facebook which sums up my problem in a nutshell and it’s this:  healthy people have about 16 useable hours in a day, whereas I have about 6 (if I’m lucky and it’s a ‘good’ day.  On a bad day I have about 2).  Yet I still have to do most of the things healthy people do, I just have less than half the time in which to do it.

I still have to wash, dress, shop, cook, eat, wash-up, tidy the house, walk the dog, pay bills, do paperwork, buy birthday presents, look after 2 sick elderly parents and maintain their schedules, do laundry, reply to emails (inbox currently standing at 152), blog, keep my car running, pluck my eyebrows, maintain my scooter, weed the garden, shave my armpits (it’s summer after all), keep up with friends, deadhead the flowers, feed the birds, attend endless medical appointments, sweep the paths, fix broken stuff, put the bins out, do the recycling (paper/tins/plastic on a Monday, garden bins on a Wednesday), remember to get money to pay the window cleaner and the house cleaner (when she bothers to turn up) and the dog walker……….and in my ‘spare’ time do my photography.   Only I have to do it all before 4pm, because at 4pm my body conks on me and I am confined to bed until 9am the next morning.

OK I don’t have children or a full-time job (other than my health, which fucking well is a full time job) but I do have a dog which is like having a permanent 3 year old that never grows up (feeding, bathing, hair cutting, beard cleaning, toe nail trimming, pain management, exercise, cuddling, playing, loving and being woken at 5.30am 365 days of the year) and two confused parents who rely on me for just about everything – kids would be easier because at least they eventually  become independent.  And let’s not forget the fact that I’M SICK.  Healthy people do what it is they do feeling absolutely fine.  I, OTOH, do everything I do through pain, nausea, buzzy pins ‘n needles, feeling like I’m coming down with some evil lurgie every second of every hour of every day and on roughly five hours sleep.

It’s no wonder that my brain is so full I forget things.  It’s no wonder I’m often late with so much to do and so little time in which to do it.  And it’s no wonder I’m permanently exhausted, having done the equivalent of two full-time jobs in a week.

When I tell healthy people I’m busy they look at me in amazement.  “You spend half the day in bed!” they say accusingly, like I’m lolling about there for fun and relaxation.  This might be true but before I’ve crawled between the sheets I’ve crammed into 6 hours what they leisurely do in 16, and when healthy people have been in bed all night they wake refreshed and raring to go whereas I’m still completely fucking exhausted from the day before.

I swear if one more person asks me “what do you do all day, do you not get bored?” I might actually slap them 😀

Weekly roundup

My week started off great……….. and ended up in A&E.   I’ve been having way too much fun this past fortnight with the lovely weather, relatively good health and fab days out with friends and we all know that me being happy isn’t allowed so the Universe decided to re-dress the balance.  The Bitch.

Tuesday I had another lovely day out at the seaside with a friend from my Camera Club.  We took a picnic lunch and tootled round taking photos of anything and everything while the sun beat down and the breeze cooled our skin.  Gorgeous-ness.

Thursday I had another idea in my head for a photo in my new wedding dress, so I got my spare room all sorted, wrangled myself into the dress and laced up the corset, took one test photo then went to check it on the screen, caught the dress on the tripod and the camera went a perla landing face down on my wooden floor 😦  Thankfully my £1000 camera body was fine but I smashed the lens to smithereeens.  Bugger and double bugger.  I have accidental damage on my house insurance though so immediately started hunting out receipts for my lens and taking photos as proof of the damage.  I rang the insurance company within the hour expecting to have to leap through burning hoops in order to get the lens replaced and was gobsmacked when the lady on the end of the line was lovely, didn’t ask for any kind of proof or even a photo, and told me a cheque would be put in the post the next day 😀  Mind you, I have had the policy for 30 years and this is only my third ever claim so I’m sure that helped.   I immediately went online and ordered a new lens which should be here by the start of next week.  Phew!  When I am camera-less I feel like I have a limb missing.

The next day, being unable to take any photos yet still enjoying a good spell of health, I decided to get to grips with some long overdue jobs in the house, including a big sort out in my “studio”, aka spare room, which I’d wanted to do for about three years!   I put lots of stuff up in the loft which was stupidly hard work on my own, but I felt really proud that I’d finally tackled it even though every joint in my body was now screaming and my head was totally fogged up with exhaustion.  I stood on the landing with the loft pole to push the loft door back up, got it nearly to the ceiling, the pole slipped and the door came swinging back down……….and smacked me square in the face.  OUCH!!!  I thought at first I was dazed but fine and then I realized my mouth was full of liquid, so I went to the bathroom, bent over the sink and the blood poured out.  Shit, I thought to myself, I’ve knocked my sodding teeth out but thankfully they were all intact and it turned out I’d split my lip right through to the inside.  I applied a cold, wet flannel for a good 10 minutes until the bleeding slowed down then took a look at the gaping 1cm cut on my face and decided I needed to get it looked at.  Gathered my stuff together, got the dog bungled in the car, and off we went into town which normally takes about 12-15 minutes.  Not today though.  Of course not.  There had been an accident on the motorway and all the traffic was diverted, so I sat for what felt like forever all the while dripping blood.  In the end it took 40 minutes to drive six miles, but I eventually dropped Bert off with my parents and headed up to A&E which was thankfully fairly quiet despite the fact it’s the school holidays.  Within a couple of hours the wound had been cleaned and stitched and I have to go back on Weds for a check, bearing in mind I often take longer to heal than a healthy person due to my hEDS.

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It’s a shitty thing to have happened but I still feel incredibly grateful that I didn’t break my nose or knock my front teeth out.  Having said all that, I got home dazed, exhausted and feeling a bit sorry for myself and all I wanted was a cuppa, a soothing soak in the bath and to crawl into a clean bed.  Only my cleaner hadn’t been again this week and my bed was minging, so I set about stripping it and putting on fresh sheets.  I then fed the dog, emptied the dishwasher, re-stacked it and then finally had my bath.  It’s times like this that living alone is absolutely and utterly rubbish and a comforting hug and someone to look after me would have been heavenly.

I am so obsessed with my photography that the worst part of both accidents is that I’m brimming with ideas for photos yet am now camera-less and look like the Bride of Frankenstein!  It’s so frustrating, but at least it gives me the chance to edit some existing photos – here is one of the wedding dress I took last week with a back-drop taken during a particularly cold spell this winter.  It isn’t quite finished yet as the perspective is wrong on the wings and there’s something weird going on with the skin on my arm but you get the gist:

They say things come in threes so I’m spending the next week cocooned in bubble wrap, wearing a crash helmet and staying in bed out of harm’s way 😉

 

Toolkit for GPs

This is just a quick post to say that an excellent, comprehensive and easy to understand toolkit on Ehlers-Danlos Syndrome aimed at primary care/GPs is available on the British Royal College of Physicians website.   Not only does it cover hEDS in detail it also has excellent information on MCAS and POTS in the ‘Emerging Major Associations’ section – hurrrrah!  Maybe now we might start to find Doctors in the UK who have at least heard of these three disorders and the more people who are diagnosed the less “rare” they will all become.  Because we know they’re not rare don’t we?!

It’s been interesting reading through all the info and I’m definitely sending the website link to the Eye Consultant I saw at the hospital this week and my GP just in case she hasn’t got the memo.

 

 

Weekly roundup

I seem to have had lots of new followers in the past couple of weeks, so “hi” and *waves* to you all, though why any of you want to listen to me rabbiting on is anyone’s guess 😉

The perfect weather, and my as-good-as-it-gets spell of better health, has continued this week and I’ve been doing way too much again.  Monday a couple of old codgers from my Camera Club asked me if I wanted to go with them to the coast on a photography day out and, as it’s been twenty years since I went to the seaside, of course I said yes.  I really enjoyed it and even though I didn’t take any brilliant photos it was still gorgeous to feel the salty, sea breeze on my skin.

Last week I had a phone call from the eye Consultant I saw recently at the hospital.  She’d never heard of Ehlers-Danlos Syndrome so after she saw me the first time had researched it – I was gobsmacked that any Doctor cared that much, cos let’s face it most don’t.  Having discovered the way it can affect the eyes she called me back on Weds to do a few more investigations (which were thankfully all fine) before referring me to a better hospital.  I thanked her profusely for taking the time to look my disease up and it turned out that as she’d read about hEDS light bulbs had gone off for her daughter.  So she quizzed me mercilessly on the symptoms of hEDS and I was happy to fill her in, after which she said she was going to have a word with the Rheumy at the hospital who I’ve seen and is knowledgeable on EDS.  She was only a fairly young Doctor who had clearly had little or no training at medical school on EDS, so hopefully now she will talk to her colleagues about it and the word will continue to spread 🙂

I’ve had a couple of photos in mind which would only work if I wore a dramatic dress, so I’ve been bidding on eBay for second hand wedding dresses.  I couldn’t believe my luck when this week I won a £3,000 couture ex-display dress, never worn, for £40.  £40!!!  So I spent an hour on Friday wrestling myself into it (quite hard to do a full lace-up corset on your own!) and taking pictures of myself in my spare bedroom wearing a long ginger wig.  I was then able to cut myself out and make up a photo from other pictures I’d taken recently.  It’s not often I love my photos but I’m chuffed with this one and might even print it off and put it on my wall 🙂

Editing my photos has been tortuous though as not only did I have a rumbling migraine which lasted for three days I’ve done something to the carpometacarpel joint and/or surrounding ligaments on my right hand.  It’s one of the worst places to have an injury as I’m finding it impossible to immobilize.  I’ve tried my thumb brace and my usual wrist brace but both allow too much movement of the joint 😦  Ideally I need to buddy tape my thumb to completely stop it moving but I have no clue how to do that – any Zebras out there with ideas?!  This is the joint in question:

By the end of the day the pain is baaaad and travels up my whole arm and into the top of my back due probably to nerve inflammation.

My bezzie mate is coming down this aft and we’re going to lounge by the river in the warm sunshine and put the world to rights, so I’m looking forward to that.  First though I need a shower.  I’ve been so busy using my energy for fun stuff this week I haven’t had any left for essentials, but now I smell and my hair is itchy so I have an urgent appointment with a flannel and some shampoo.