Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

My life has hit an all time low this week.  I’ve had to buy hemorrhoid cream.  Fifty years of straining to give birth to ginormous poo courtesy of my overly stretchy bowel has finally taken its toll and I now have a slimy, ridiculously itchy grape hanging out of my bum.  Somebody shoot me 😉

The entire week has been taken up with photography-related gubbins, so apologies if this post bores you all rigid.  Tuesday night saw the return of our monthly beginner’s workshops and I teach the opening class.  It was full and I think it went well despite the fact my voice was still struggling a bit from doing the Scottish talk the week before.

Wednesday night was our first league competition of the new season at Camera Club and I’m delighted to say I won joint first place with myself for my Raven Tower picture and the selfie I called ‘Behind the Veil’.  I was chatting to the judge afterwards and she said:
“the lady in the scarf is beautiful, who is it?”
“Me!” I replied.
So she looks at me with my glasses on, my grey roots showing, my wrinkles and turkey neck and the fact I hadn’t even brushed my hair that night and replied, shocked “really?!  Are you sure?”
Er, what was she trying to say exactly? PMSL 😀
“Yeah, thank God for Photoshop and the fact it takes 30 years off me!”
To be fair I don’t look anything like I do in my selfies in real life – I’m 51 not 21 😉

I think I may have mentioned the fact that I’ve decided to go for my next photographic distinction and the deadline for submissions is 22nd of this month.  It’s taken the entire summer to decide which fifteen photos to use, get outside opinions on how to improve them, get them perfect, print them off and then I’ve spent three days this week mounting them onto 50 x 40cm board.  I’m finally done and it feels like a huge weight has been lifted from my shoulders!

Of course, all this activity lately has sucked every ounce of energy I possess from every cell in my body and I now feel like road kill.  My histamine levels are really high and I need some down time over the next couple of months to stabilize my health.  Not only that, but I’ve been neglecting my parents a fair bit and poor Bertie has had to come and plonk his bum on the keyboard in order to get himself noticed.

I have now gone 50 days without a period, hurrahhhhhh!!!!!  I still have daily, low level period pain though, backache and I’m seriously not sleeping but for the first time in 40 years this month I’ve been spared excruciating endo-related period pain and for that I am truly thankful 🙂





Weekly roundup

I’m kinda glad this week is over.  Although I really enjoyed doing my photography talk up in Scotland it was months of preparation and worry about how my health would hold out which has felt like a lot of pressure and my mast cells don’t do pressure – I’ve had hives on my bum for weeks.  My Mum & Dad (well, my Mum…… Dad wouldn’t think to!) bought me a card and a bunch of flowers to say “well done” and I was really touched.  Due to Mum’s alcoholism she hasn’t done anything like that in years because she hasn’t cared less about my life.  Now she’s massively cut down on her drinking she does seem to be much more engaged.

I am on day 43 of my menstrual cycle.  Dare I hope that this is the beginning of the end and I’ll finally be saying goodbye to The Curse which has tortured me for 40 years?!  Every day for the past fortnight I’ve felt like my period is going to start as I’ve had bloating, migraines, period pain, backache and exhaustion but as yet there is no sign and my boobs aren’t sore – they’re always sore leading up to my period so that’s weird considering I’m having all the other symptoms.  My back pain is terrible, though, the worst it’s been in years and I have had horrible shooting nerve pains in my legs and feet – I’ll be lying there in bed and all of a sudden it’s like I’ve been stung by a cattle prod :-/  A couple of years ago I had the same pains in my boobs and was sent for an early mammogram but all was fine and they eventually disappeared, so I’m sure it’s ‘just’ my hormones.

My Dad was due to have an echocardiogram of his heart on Thursday, which is basically an ultrasound to check the structure.  I offered to go with him but as he wasn’t seeing the consultant or anything he said he’d be fine and my Mum went instead – he’s had an ultrasound on his gallbladder & kidneys so knew what to expect.  Afterwards I rang to see how it had gone and he said “Grand.  She put the sticky pads on my chest and I was in and out in 10 minutes” which I knew wasn’t right.  The sticky pads are used to do an ECG (ie heart rhythm trace) and as he’d already had a 4 day ECG done he didn’t need another.  I quizzed him a bit more and he was adamant that he’d had the sticky pads and no scan, so I phoned the hospital to find out what was going on.  Sure enough, he’d had a scan and they had the results on the screen.
So I asked him again.  “Did the lady use a wand or anything on your chest Dad?  Was there a screen next to you?”
“Oh yes, she pressed into my ribs, then I had to lay on my side and she pressed again.”
“And you didn’t think to tell me this when I asked the first time?”
“Should I have?”
Bless him, you can’t trust a word that comes out of his mouth.

Today I really must do some housework because the place looks like a bomb has hit it.  I haven’t touched housey-type jobs in 3 weeks as I was conserving energy for my talk but I can’t put it off any longer.  There’s one huge obstacle though…………….I fucking hate housework.  And paperwork.  And having to put away my garden furniture for winter.  And clipping the dog.  And scrubbing poop off the bird feeders.  And changing halogen bulbs in recessed ceiling lights (why in God’s name has that been made so complicated?!).  And ringing the electrician to come and look at my faulty outside light.  In fact, anything which doesn’t involve taking photos 😉  I hope the Universe knows that I need a lotto jackpot win so that I can employ a servant to do all this boring shit for me and sorts that out tout de suite if not sooner!

The Talk

I’ve barely slept a wink all night because I am ridiculously over-stimulated but I wanted to share my experience with you because I think many of you will relate to how much doing something out of our comfort zone takes out of us.

Camera clubs meet weekly and do a variety of different events – competitions, workshops and they hire speakers to talk about aspects of photography and showcase their images.  About 3 months ago I was asked by a Club in Scotland to be their guest speaker for the evening, a prospect I found terrifying but also exciting, so I agreed but with huge trepidation.  It meant a 2 hour round car journey (a friend from my Club said he’d drive me, God love him), in the evening when I am physically and mentally at my worst (I usually go to bed around 4pm and stay there until the next morning) and I had to speak for about 1½ hours in front of a room full of 50 strangers many of whom were better photographers than me!

I’ve spent the last 3 months preparing, in the end putting together a slideshow of 86 photographs.  I then spent 3 weeks practising my speech over and over and over, as it needed to go to time and I wasn’t using any notes (a huge deal considering I have a brain injury and my memory is shot!).

The thing I worry about most when I’ve agreed to do something which I can’t back out of is how my health will be on the day.  I never know until I wake up in a morning how I’m going to feel and I frequently wake with a dislocation or a migraine so severe I literally can’t move.  Due to the menopause, my health is particularly up and down at the moment and I have stressed for weeks about how I was going to feel on the day of The Talk.  For days beforehand I didn’t dare to do anything, trying to conserve my energy and ward off serious injury.

I’ve actually had 4 or 5 relatively ‘good’ days recently, though I’ve barely slept, but I woke on Tuesday feeling poisoned, achy, my limbs were like concrete and I had zero energy.  My period was due 12 days ago but, despite period pain, backache, exhaustion and migraines, it had not put in an appearance and I had a sneaking suspicion that Aunt Flo would arrive the day I was due in Scotland :-/

Thank the Lord I woke Wednesday morning not only period-free but with slightly more energy than the day before, though I yet again hadn’t slept and by lunchtime was ready for a nap……which I didn’t dare have, because if I sleep at all in the day-time I wake poleaxed and feeling absolutely terrible.  So I battled through the afternoon with my eyes burning and my head swimming with fatigue, dropped the dog off at my parents’ at 5.30pm and set off with two friends to Scotland.

I’d decided not to be nervous.  I’d agreed to do this thing and having done so I was determined to simply relax and enjoy it and I managed that until the Chairman started to introduce me which is when the nerves kicked in, my hands started to shake and my heart flipped flopped around in my chest – not good for someone with dysautonomia who is prone to feeling faint!  But I quickly settled in to my talk, which was supposed to last for 45 minutes before we broke for coffee.  Only I must have missed some bits out because I finished after only 35 minutes, but because it had all gone by in a blur I couldn’t remember which bits I’d missed out!

I had to try and extend the second half of the talk to make up the time and thankfully little snippets that I’d missed in the first half came back to me and I was able to include them.  I’m delighted to say that I must have done OK in the end, because people were literally queueing to speak to me afterwards to tell me how much they’d enjoyed the night and I was immediately booked to go back – not that I’ve agreed as yet!

Although exhausted on the journey home I was also high as a kite with adrenalin and having been so massively over-stimulated.  I didn’t get home until gone 11pm and have literally had 2 hours sleep as my brain simply couldn’t switch off.  I’ll be tired but fine today though my head is already starting to thump, but tomorrow I know I’ll feel like absolute shit and it might be Monday before I feel even half-way human again.  But on this occasion it’s been worth the payback.  I feel a ginormous sense of achievement and I know I subtly educated the audience on EDS, M.E. and invisible disabilities, not to mention the sexual abuse and harassment of women through my image which depicted the #metoo campaign – you could literally hear a pin drop in the room when I talked about my experience of being a 17 year old model and the things which happened to me.

I’ve worried about this talk for three months.  Worried I would wake on the day too ill to go.  Worried I would have a hot flush or faint during the presentation, or get totally muddled and not remember what I was saying.  Worried I’d use the wrong words without realizing (which happens often!) and make a total fool of myself.  I can’t tell you how relieved I am that it all went off OK and, more importantly, that the audience seemed to like it 🙂  I enjoyed it too, despite all the worry and work and inevitable payback, and it’s at times like these that I get hugely frustrated by my health and the limitations it places on my life because I’d love to do more of these kinds of events but know, if I’m totally honest with myself, that it’s simply all too much.  But at least I have spent one night having my voice heard, for which I am hugely thankful.




Although my upcoming talk this week is on photography I’m using the platform to make some subtle points about disability.   My neighbour used to be a keen mountaineer, only he got stuck up a mountain in a blizzard for 24 hours and lost all his fingers, both thumbs and part of his nose to frostbite and had to have his leg amputated as it was badly crushed.  He is the poster child of someone who is disabled.  I, OTOH, will look totally fit and well as I stand before my audience yet the ‘disabled’ guy runs 3 miles a night on his artificial leg and still goes mountaineering while I struggle some days to get dressed and only manage a shower once a week.

I asked if I could take a photo of my neighbour for my talk and he agreed.  The resulting image was put on facebook and immediately I received comments on how brave and inspiring he is because of all he achieves despite the challenges his disability poses.  I don’t disagree.  Despite having no fingers and only one leg he runs a thriving upholstery business, has 4 children and has so far been on three holidays this year………while I lie in my bed skint and alone having not had a holiday since 1996 because I’m way too sick to travel.

I’ll never be called inspiring or brave.  Not that I would want to be called brave simply for enduring the shitty hand I’ve been dealt and I know it also gets on disabled people’s nerves – it’s not like we’ve deliberately chosen our lives like someone chooses to run into a burning building – but the point remains that there is acknowledgement of overcoming adversity with disabilities which is absent when one is chronically, and more importantly untreatably, ill. It is, of course, a different kettle of fish when it comes to The Big C because cancer patients are routinely thought of as ‘brave’ and ‘inspiring’ and when they’re cured by modern medicine they are deemed to have ‘won the battle’, words which are all too often missing when describing the chronically ill.

If healthy people acknowledge me at all it’s as lazy, weird, anti-social, weak or a scrounger and the words “you poor thing” have actually been said to my face.  The strength it takes to live a life of chronic illness is never acknowledged let alone applauded.

I may not have four children (who, btw, live full time with their mother) but I do have a dog and two elderly, sick parents to look after.  I may not climb mountains but I create with my photography.  I blog (nearly 1 million visitors!), I volunteer, I teach…………yet he is ‘brave’ and ‘inspiring’ while I am ‘weird’, ‘lazy’ and ‘a poor thing’.   Why is that I wonder?


Weekly roundup

Apologies for the fact there was no blog post this week.  I sat down to write one on a couple of occasions and found I just didn’t have much to say.  After 5 years of blogging twice a week sometimes I don’t have anything new to add that hasn’t already been said and this week felt like one of those times.  I’m sure I’ll be back to my chatty self soon.

I’m feeling very emotional this morning.  I had a lovely day yesterday, but it was a big day and whenever I’ve done too much and am over-tired my emotions take on a life of their own (called emotional lability).  I woke up obsessing over something I said to a family member nearly 3 years ago and it’s making me feel sick to the pit of my stomach.  My rational brain tells me to stop being bloody ridiculous, it’s done and over with and there’s nothing I can do about it now but my overly emotional emotions won’t give it up and I know I’m going to spend the day wanting to crawl out of my skin.

The reason I’m so tired is that I went through to the city yesterday and not only is the 60 mile round drive tiring I find all the hustle and bustle exhausting.  I thought I’d do a bit of shopping for an hour but I wandered around like a lost puppy gazing at all the bright shiny things and felt totally overwhelmed.  As a 51 year old with a saggy arse and ever-expanding waistline who lives in the middle of nowhere and has been largely housebound for a quarter of a century fashion means nothing to me.  I gazed at all the boots with heels on like they were alien spacecraft (my back barely allows me to wear flat shoes let alone 2″ platforms :-/ ) and the clothes looked either uncomfortable or cold (why do men get to wear thick, fishermen rib, roll neck sweaters down to their butts and women have to wear see-through jumpers with 3/4 sleeves and scooped necklines which barely reach their waist-band in the middle of winter?!).  The price of everything also made my eyes water and I just know I’m going to be one of those women who spend the rest of their natural days in leggings and fleeces from Matalan 😉 .  At 5.30pm I’d arranged to meet my bestie for dinner and really enjoyed it.  She was on great form and we had a lovely meal, followed by a show featuring Robin Ince from Radio 4.

I have a photo competition coming up with the theme of ‘town or city-scapes’.  I am not a landscape photographer and despite the looming deadline had not got one picture to enter, so I took my camera with me and got some shots of the city at night on the way back to the car – they’re absolutely rubbish but I least I have something to enter.

Wednesday was also a big day for me as I’d agreed to judge my first ever competition at my Camera Club.  I’d been given the images before-hand so I could award them all marks but it was still daunting to have to stand in front of 40 people and critique each image, trying not to be negative but still giving feedback on how each picture could be improved.  I think I did OK though and got some nice comments afterwards 🙂  This Wednesday is an even bigger day, as I am guest speaker at a Scottish Camera club and have to talk for nearly 2 hours in front of a room full of complete strangers – gulp!

I don’t think my emotions or energy are being helped by my schizophrenic hormones.  Last month I had a period on day 12 of my cycle and this month, despite feeling like it’s going to start any second, I am currently on day 36 of my cycle with no show from Aunt Flo.  I am waking every sodding night at 4.30am and not getting back to sleep.  Even last night, when I didn’t get to bed til nearly midnight, I was still wide awake at 4am.  FFS.  I have also had another 2 brutal migraines this week which weren’t helped by the fact the road outside my house is being resurfaced and men with drills spent 8 hours one day taking up the old tarmac.  I can’t tell you how ready I am for this menopause bollocks to be over.

A couple of weeks ago my friends kids came to model for me and I’ve ummed and ahhhd over what to do with the resulting images.  I still haven’t decided how to edit the older girls’ picture but finally came up with an idea for the younger one’s which I’m happy with – I’m calling it Evacuee.

I’ve had an incredibly busy summer and have been preparing for my talk this week for months (I’m showcasing nearly 90 pictures!), so even though I’m excited to do it I’ll also be glad when it’s over and I can have a well earned rest.  I feel I’ve been neglecting myself recently and am in imminent danger of a relapse so I’m planning on having a quiet run up to Christmas to try and claw back some energy – famous last words!



Weekly roundup

This week has been a bit dull and hard going if I’m honest.  My hormones are still making themselves heard, my back, hips and legs are painful and I’m fed up of not getting a decent night’s sleep and consequently spending every day knackered.

The highlight of the week was Tuesday.  As you know, I’d judged my first international photography Salon recently and on Tuesday night the judges gathered together to choose the medal winners.  I enjoyed looking through all the top ranked pictures and being amongst people for a natter, even if it did take 3½ hours by which time I was almost comatose.

Camera Club was cancelled on Wednesday due to “adverse weather conditions”.  I’ve never heard such tosh in all my life.  I received the message at 2.30pm while I was out walking Bertie.  It was bone dry and so warm I didn’t even have a jacket on!  Yes it was a bit breezy as we caught the tail end of some storm or other, but this is Cumbria in Autumn – if we cancelled stuff every time it was a bit windy nothing would ever get done.  If southerners can’t hack living up north they should go back down south is my conclusion.  I was supposed to be teaching software that night and had spent 4 hours preparing, so I was well pissed.  My time and energy are so precious to me I can’t afford to waste them.  The evening wasn’t totally ruined, however, as I received an SOS off a fellow Club member who was so fed up of staying in his house alone he asked if I’d meet him in the local pub for supper, and as I was also fed up of staying in the house alone I said yes (before you get the wrong idea he’s in his seventies so there is nothing romantic going on!).

Thursday I left one of the hob rings on full for over two hours and singed the wall behind.  It’s the third time in as many weeks I’ve left the cooker on and could have potentially burned the bloody house down.  As it is I’m going to have to repaint one entire wall of my kitchen because the paint has been on for several years and if I try to patch it it will look crap 😦  I swear my memory is so bad these days I’m worried I have dementia.

I was woken at 4am Friday morning with a brutal migraine.  They have been baaaad recently and I’ve had to resort to taking Ibuprofen, even though I have a mild reaction to it.  I know that one of these days the reaction will turn more severe and I’ll have to stop taking it but for now I’m putting up with the palpitations, nausea, muscle cramps and feeling weird in order to get rid of the god awful head pain which two days on still hasn’t totally gone.

I’ve been bored this weekend but not up to doing much.  In the end I decided that I wanted to try taking a fine art portrait, so I got into my wedding dress in the spare bedroom and this was the result.  It needs more work because I’ve put too much texture over parts of the skin but it’s turned out OK I guess for a first attempt.

So, that’s been my week.  Apologies this post is as dull as dishwater but then not much has happened.  I’ll try harder for a bit more excitement next week, like a Euromillions jackpot win or bumping into Hugh Jackman in Sainsburys but don’t hold your breath 😉

What you don’t get is…

My friend and fellow blogger Lindsay’s latest post over at Musings of a Dysautonomiac was about the difficulties she faced on a small trip with her family and the effects of this on her health.  It made me think about all the things that healthy people enjoy and take for granted but which are no fun for me and devastate my life.

I haven’t been on holiday since 1996.  For a start I can’t afford a vacation, but on top of that a holiday is supposed to be fun and relaxing and something you come back from refreshed and raring to go, only it’s not like that for sick people.  It’s hard work, makes you even more sick and you need a month in bed when you get home to claw back your energy and regain the equilibrium that you have lost.

Over the years I’ve had the occasional request to go on holiday from friends and they’ve simply not been able to grasp why I’ve said no.  “But all you have to do is sit in a car, sit on a plane and sit on a beach!” is usually how the conversation goes, to which my reply while they roll their eyes in exasperation is “I’m just not well enough”.

But what I’ve actually wanted to say is this:

“So I don’t have to find someone to look after the dog, take his bedding, his food, his bowls, his towels for his muddy paws, his lead, his medication and his poo bags to his new pad, remembering to leave the vet’s number just in case his spine finally gives way.
I don’t have to pack.
Travelling in a car doesn’t make me horrendously motion sick, dizzy or cause me endless torturing pain.
Airports aren’t noisy or busy, don’t pound my poorly brain and I don’t have to stand endlessly queueing.
There are no bugs circulating in the reconditioned air on the plane which will inevitably make me sick as a dog and not affect anyone else.
The sudden heat and humidity of being in a hot country won’t make me feel like road kill.
The change of water and food won’t set off my mast cells or my stomach problems.
Spanish hospitals are going to know what MCAD is when I inevitably have anaphylaxis, or what hEDS is when I dislocate some joint I didn’t know existed.
I’ll be able to find low histamine foods in a Spanish supermarket or ask the Hotel to provide them.
My bed will be comfortable, and allow me to sleep pain-free, with only 2 thin pillows and a plastic covered mattress.
I won’t be eaten alive by insects and end up covered in massive hives.
My migraines will take a fortnight off.  Ditto my hormones.  Ditto my pain.  Ditto my dysautonomia.  Ditto my fatigue.
I won’t have to stand in a long queue at the buffet table every night for dinner and eat it sitting upright at a table, when I usually eat reclining in my bed.
You won’t expect me to stay awake past 4pm in the afternoon and be up all evening, even though I usually go to bed every day at 4pm and stay there until the next morning.
You won’t want me to walk by the beach, go on a trip or swim with you in the sea.
While I am in bed waiting for you to come back from swimming in the sea, walking by the beach or from your trip I won’t be bored because there will be an English speaking telly to watch.
I won’t feel isolated, depressed and invisible lying in bed waiting for you to get back and listening to the rest of the world outside my window having fun.
You won’t expect conversation on top of all of the above.
I won’t get back home to a pile of washing that I no longer have the energy to do.
I didn’t spend the last foreign holiday I had in a Mombasa hospital close to death and it didn’t give me PTSD.

I’m in!  Sign me up.”

But of course I don’t say that, because they wouldn’t get it if I did.  Packing to them is no big deal, the airport is exciting and their holiday will leave them feeling great.  There can’t possibly be any comprehension of how hard it would be for me, how left out of everything I’d feel while they went exploring or swimming or drinking, or how long it would take me to get over the trip once we got back.   So I just say no and end up looking anti-social and like I’m not up for having fun.  Again.  Even though I’d give my right arm to have a fortnight away from the prison which is my bedroom and to have 2 weeks off from my diseases.

To add insult to injury, having said no, I then have to look at their holiday snaps on Facebook and ‘Like’ their post, even though I’m jealous as hell and hate them for being well and taking for granted all that they have and can do.  In fact, if they knew how much I actually resented them we wouldn’t still be friends.  And then I hate myself for wishing my diseases on them so that they’d understand my life just for one day.

I’m at the stage now where I’m resentful if I’m asked to do stuff I clearly can’t do, and resentful if I’m not asked and left out altogether.  In fairness, my healthy friends can’t win no matter what they do which is why I’m so grateful for my sick friends, none of whom are going on holiday or to concerts or on days out to the fun fair either.   They make me feel less like an alien living in a foreign land and more like I’m part of a community to which I belong.