Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

This week seems to’ve passed in a bit of a blur and I’m not quite sure what I’ve been up to.  My period must be imminent because I’ve been hormonal and emotional and spent yesterday with a migraine, backache and period pain plus I’m not sleeping well again and have been awake this morning since 4.50am :-/

Tuesday I met two of my old codger camera club buddies for lunch which was lovely even if one of them is a typical old geezer who likes to tell me how I should run my life despite the fact I’ve managed successfully for the past 50 years without his input 😉  What is it about some men who feel the need to constantly tell women what they should be doing and how they should be doing it?  I’m sure in their mind they think they’re being helpful but actually they just come across as patronizing and it’s noticeable they don’t have the same conversations with their male friends.

My camera has gone off to Olympus in Portugal for repair and a friend has lent me his old camera in the meantime as he’s currently not using it.  It’s really kind of him but it’s like driving someone else’s car – I have no clue where the controls are or what any of the buttons and dials do.  It’s also nowhere near the quality of my own camera so I’m not even sure if it will be of any use.  I can’t believe my luck that my camera broke now of all times, when I am ridiculously busy working towards two different photographic distinctions for which I can only apply once a year and have looming deadlines.

I managed to get my laptop screen with the dead pixels changed for free though, only for the computer engineer to discover that the new replacement also has dead pixels.  “That’s unlucky” he says.  It’s the story of my life.

My last serious boyfriend was a naturally lucky person.  Good things simply fell in his lap without him trying for them or even particularly wanting them.  I, OTOH, am the complete opposite.  If something can go wrong for me it usually does and bad luck seems to follow me like a cloud.  He has breezed through life with his barn conversion home (which his parents sold to him for £1), his lovely wife, his six figure salary and his triplets while I have struggled, fought and strived for every little thing.  S’not fair *stamps foot*.

Bertie turned 10 this week.  He has a severely herniated spinal disc which causes him a lot of pain and grade II heart disease but other than that he’s still like a puppy and greets each day with excited gusto.  He’s my reason for getting out of bed every morning (usually at 5.45am!) and the reason I took up photography as I’d had no interest whatsoever before getting him, in fact I didn’t even own a camera.   Happy birthday to the light in my life 🙂

 

 

 

 

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It’s not just us

Did you know that Ehlers-Danlos Syndrome is not just a human disease?  It’s also been found in animals, including cats, dogs, sheep, cattle and mink and if it’s found in these species chances are it’s also in other species and just not reported.  When I mentioned this to my vet he’d never heard of it and it’s estimated that, like humans, EDS in animals is vastly under-diagnosed.

Skin complications tend to dominate and joint hypermobility is less common, or at least that’s what’s been found so far but to be fair there has been hardly any research done so hypermobility could be more common than is first thought.  Or it could be that animals have one of the variants of EDS which involves more skin issues, a bit like classical EDS in humans.  Vascular EDS was reported in a dog in 2015 so it’s possible that animals have all the variants of EDS that humans have.  If it takes an average of 10 years for people, who can vocalize symptoms, to get diagnosed I’m sure the disease is missed in the majority of animals unless it’s very severe and blatantly obvious.

Cushing’s Disease (hyperadrenocorticism) has been seen to be a complication or co-morbid condition in the majority of cats with EDS.

Although no gene has been identified it appears to definitely be an inherited trait in animals, so affected animals should not be bred.  From the little knowledge available dogs can have severe disease and not live past 2 or 3 years of age, though some with mild symptoms can have a normal lifespan.

I’d love to know the prevalence of allergy symptoms in animals with EDS!  I’d imagine any rashes or blisters are put down to part of the skin symptoms of EDS rather than as a co-morbid condition like MCAS and it’s not like your dog can tell you its nose is bunged up, its lips are tingling or it’s feeling tight chested.

I always find it fascinating when humans share diseases with animals.  People can be accused of being a hypochondriac or their symptoms put down to being ‘all in their head’ but the same can’t be said of animals.  Just because the gene associated with hEDS hasn’t been identified yet doesn’t mean it doesn’t exist.  Dogs and humans don’t exactly eat the same food either, so it’s not like their diet can be blamed.  When animals are sick their symptoms are studied without all the mental, emotional and social connotations which are linked to human disease so maybe researchers need to look more at EDS in animals and it might help our understanding of EDS in humans.

 

Weekly roundup

Hurrrahh, I finally feel like part of the human race again and it is fabulous 😀  This week I’ve suddenly perked up for no reason I can fathom.  I’m sleeping through without getting up to pee, my brain fog has lifted from severe to normal-for-me (which is still shit but liveable with) and my energy has also returned to normal-for-me (which again is still shit but at least I’m not spending 15 hours a day asleep and the rest of the day lying on the couch wishing I were asleep cos I’m so ill and exhausted).  On the downside my butt pain is worse and my SI joint is killing me to the point where I can’t sit in one position for long without shooting pains down both legs and I’ve done something to my right wrist which is now all bandaged up but, hey, I’ll take it if it means my energy is no longer AWOL.

Sadly that’s the end of my good news for this week, but at least I’ve been able to deal with the crap that’s been thrown at me because my health has improved – silver linings an’ all that 😉

Having spent most of last week in bed feeling awful I decided to take my new found energy down to the river for a couple of hours to see if I could get some photos of a Black Head Gull I’d spotted while out with Bertie.  It was a lovely day, warm but not hot, and after the Gull arrived almost on cue I spent a lovely hour taking pictures.  In fact, I took so many my memory card became full so I went to remove it to insert a new one…………..and it wouldn’t come out :-/  The little spring which ejects it just wasn’t working, so I grumpily had to abandon my morning out and go home.  To cut a long story short it’s obvious my camera needs repairing, so I tried to raise a repair ticket online.  Would it go through on the Olympus website?  That would be a big fat no, so after 1½ frustrating hours I gave up and will have to ring them tomorrow.  The thought of having to send my camera off, then being camera-less for ages, makes me want to weep and as I’m already overdrawn at the bank and August has only just started I have no clue how I’m going to afford to pay to have it fixed.

Yesterday I received an email off a member of my Camera club.  She’d been talking to a mutual friend who moved away last year but is now back home and he told her about my photography website, not knowing that it is a private website I only use for close friends and family.  It contains all the new images I’m using for competitions in the new season and I don’t want other club members to be able to see them and pinch my ideas (which has happened before!).  He’d tried to remember the address from memory, giving her part of it, and she’d Googled this to try looking for the site.  I nearly had kittens, because in googling all sorts of connotations she might have found this blog.  It’s one thing blogging anonymously about my life and health to total strangers (ie all of you) and something else entirely when people you barely know in your home town can read all about your private life.  Honestly, I felt sick.

I speak from experience.  I wrote a blog when I adopted Bertie which was followed by a friend of a friend and I stupidly mentioned my health blog on there.  This person then read this blog, even though he’s not sick and barely knows me, then gossiped about everything I’d written with my neighbour (our mutual friend).  She then quizzed me on all aspects of my private life, from my finances to sex, and I was mortified.  I’d HATE for anyone at my camera club to be reading this blog.  So now I’m panicking.

Last night I decided to transfer all the photos I share on here which people who know me would recognize onto another website and will link to them from here.  So I went to set that up yesterday, which should have taken about 20 minutes.  Two hair tearing hours later I couldn’t get the new site to verify, so am now waiting to hear back from support.

In the meantime, I noticed my emails weren’t downloading to my desktop.  Another 2 hours of stressful faffing later I’m now waiting for support on that.

My laptop, which is only two years old, has suddenly developed dead pixels.  WTF?!  I’ve tried all the fixes and none have worked so I now have a totally fucking annoying black mark right in the middle of my screen which I can’t afford to get fixed.

Half of the lights under my kitchen counters stopped working and I’ve no idea why.

Maybe I shudda stopped in bed………

As I’ve had a very stressful couple of days my bezzie has taken pity on me and we’re meeting for lunch out today which I’m really looking forward to.  I’m ready to be pampered a bit, even if that’s only someone else cooking my lunch.  Afterwards I’m taking my Dad through to the city for a repeat MRI scan on his back in preparation for his appointment to see the spinal surgeon in a couple of weeks.  He’s struggling so much now I do hope his surgery takes place soon so that he can get back to the walks he loves.

However, first I need to get out of my pit, get dressed and take Bert out.  He’s sitting here nudging me with his nose to tell me time is ticking on.  I love him to the moon and back, even if he has left slimey snot all the way up my arm 😀

 

Judgement

When we have an invisible disability or illness we often face judgment.  Judgment when we park in the disabled bay then get out of the car looking like we’re perfectly fine.  Judgement that we are unable to work so claim welfare.  Judgement that we don’t attend family gatherings.  Judgement that we keep flaking on friends.  Judgement that when we open the door to the postman we are in our pjs at 4 o’clock in the afternoon.  Judgment that all our tests come back normal yet we claim to be sick.  And I’m sure many of us have been on the brunt end of judgemental comments online – my life is constantly judged here on my blog.  It’s painful, can be humiliating and makes us defensive and therefore angry.  My life is no-one’s fucking business but my own and so long as I’m not hurting anyone I don’t see why a complete stranger in a car park, the postman, my neighbours, a troll or even some family members feel they have a right to pass judgement.

Having said all that, my friends will tell you I’m a very black and white person.  For me there are few, let alone 50, shades of grey.  I don’t care that you had an absentee Dad and that’s why you became a druggie and robbed my house – you’re a grow up now and in control of your own actions.  If you’re on welfare don’t have babies you expect the rest of us to keep – contraception is free in this country.   Don’t tell me you love animals if you eat meat for dinner.   I could go on, but I won’t cos you’ll judge me.

I’m particularly judgmental when it comes to driving.  I was in a serious car accident in 2004 which was caused by a speeding driver who caused me to flip my car then just sped off.  I rant constantly at other drivers because I’m fearful that their careless behaviour will affect my life.  Laws are there for a reason and we should all abide by them, right?  So it may surprise you to learn that this week I broke the law while driving and make no apologies for it.

My Mum has been very unwell recently and struggling to breathe.  I rang her GP and was told she would ring me back.  4½ hours later I was in the car sat at traffic lights when the phone rang and I could see it was the doctor.  After waiting so long to speak to her, and knowing how poorly my Mum was, there was no way I wasn’t going to take the call even though in the UK it’s illegal to use a mobile phone when driving.  So I press ‘Answer’ and put her on speaker.  Just then the lights changed to green and I had to drive round the roundabout.  To be fair I never once took my eye off the road, there are no pedestrians and my car is automatic so I only need one hand to steer (even drivers who have gears only drive with one hand round the roundabout as they use the other to constantly change gears due to the traffic lights).  So even though I knew I was doing something wrong I wasn’t putting anyone in danger.  I said to the GP “I’m driving at the moment, can you just wait 2 minutes until I get to a lay-by so that I can pull in?” and as I was saying this I heard beeping behind me.  A van pulled up in the next lane and the woman in the passenger seat was gesticulating and yelling at me to get off the goddamn phone.  I get it and in her shoes I’d probably feel the same way.  I was breaking the law after all.  However, her shouting distracted me way more than the sodding phone call and I felt so shook up I was trembling by the time I managed to pull over.  I cried all the way home.  I was already stressed as my Mum was ill, I was feeling poorly myself and didn’t need this stranger’s judgement on top of everything else.

It was a big lesson for me.  Maybe there are more shades of grey than I give credit for.  We have no idea what’s happening in other people’s lives.   Those who judge me for parking in a disabled bay have no idea it’s the first day I’ve made it out of bed in a week and maybe the people I judge have valid reasons for their behaviour.  In future I’m just going to stop commenting on other people’s lives.  It’s none of my business and I’m not in possession of all the facts.

 

 

 

Weekly roundup

I wish I could begin this post by saying I’ve had a great week for a change but sadly I’d be lying.  It’s been shit.  I am poleaxed by exhaustion to the point where I feel I may be on the verge of an M.E. relapse, something I haven’t had in years.  My limbs feel like concrete and my blood is poisoned with achy, fluey weakness.  I’m assuming my hormones are to blame – I seem to be blaming them for everything lately – and I know the Menopause has caused relapses for other women with M.E.

I am definitely having vasomotor events, just no flushing.  They happen at roughly the same time each day, between 6-8pm and 6-8am, which I thought was totally weird until I Googled it and discovered that oestrogen is lowest at those times of the day and other women had experienced the same thing.  I am learning so much about my body at the moment, which under other circumstances would be fascinating but under current circumstances I couldn’t care less about – I just want the symptoms to bugger off.

I am sleeping for England.  After having 2 months of being woken several times a night to pee sleeping through is wonderful but on the flip side going back to sleep at 10am and then again at 3pm and then again at 8pm means there’s very little of the day I’m actually conscious.  Nothing is getting done.

My brain fog is seriously bad and I feel like I’m being drip fed a mild dose of general anaesthetic.  I am dizzy, spaced out and totally unable to think straight.  Even watching my favourite TV programmes is beyond me let alone doing any photography.

I am hurting all over.  I’ve had bowel and stomach pain for days, a bit like when my period is about to start (which isn’t about to happen cos I’m only on day 8 of my cycle).  My back in particular is constantly painful and not helped by the fact I have some kind of butt strain, in both buttocks.  Not on my actual bum cheeks more underneath and at the top of my inner thighs at the back.  I’m assuming it’s my adductor magnus or gracilis muscles but why both should be strained at the same time is a mystery.  Walking is painful because I constantly have ‘the burn’ even just pottering round the house.  The very last thing I needed was a red hot arse on top of everything else 😉

I am also plagued with cramp for reasons unknown.  Getting dressed, moving in bed or just stretching my legs makes them go into painful spasm.  Before anyone mentions magnesium or indian tonic water I know all about them thanks, having been ill for some considerable time.

To add insult to injury I’ve also had a 2 day migraine this week and toothache.  Yippe-fucking-doo.

Despite my body catastrophically failing me, however, I am trying to refuse to give in and still went out for lunch with my closest friend at Camera Club……..who told me she is moving to the North East 😦  Honestly, I could have bawled.  We get on really well and I have so few friends to start with that I was gutted.  Talk about kicking a girl when she’s down.

On Thursday I had to drive to the city for a mammogram.  I can’t remember half the journey and am amazed I got there in one piece, but at least it’s over and done with.  I’m not going to lie though, having it done nips like a bitch.

The only bright spot on my horizon was that I won another medal in an International Photography salon, this time a Special Jury Award in India for my Swallow! picture.  I currently have several ideas for photos in my head and it’s massively frustrating to not be well enough to do any of them.

It’s now 7.30am.  I woke at 6am, having slept for 8 hours, and I’m already seriously ready to go back to sleep and if it weren’t for the fact my tummy’s rumbling I’d do just that!

Accepting illness

When I first developed M.E. I had no idea I’d still be sick 24 years down the line.  It didn’t dawn on me that I had a ‘chronic illness’, the emphasis being on the word ‘chronic’.

The advice back in 1994 was that M.E. was a self-limiting illness and I would soon be better, so for the first couple of years I just waited for my health to return.  And I waited.  And I waited.

Not only did I not recover I actually got a hundred times worse, so during the next 4 years I scoured the globe for a cure.  I was on every internet group, forum and chat room invented and having read about other people who had recovered I was determined to find my own magic bullet (the fact that many of them probably didn’t have M.E. to start with and had been misdiagnosed passed me by!).  I was chanted over by a Tibetan Monk, did every diet known to man, tried every supplement, herb & drink on the market, sat in cold baths, was electrocuted, did acupuncture, reflexology, hands on healing, massage, osteopathy, chiropracty, listened to Neuro-linguistic programming tapes, meditated, did yoga breathing, tried to exercise, drank electrolytes & raw olive oil ……….you name it I did it, nearly bankrupting my parents in the process, and none of it worked.  In fact 80% of the treatments made me sicker than ever and some made me so ill I ended up in hospital.  This phase of chronic illness, where you dedicate your life to learning about your disease and are convinced you will be cured, is one shared by most of us I’m sure.

After 6 years it became obvious that I wasn’t going to get better any time soon and I’d read enough from other M.E. sufferers to know that once I’d been severely affected for that length of time full recovery was highly unlikely, so I finally accepted the ‘chronic’ part of my chronic illness diagnosis, throwing in the towel on my M.E. degree course.  There is no cure for M.E.  If there were none of us would be sick.

I seemed to skip some of the stages of the illness acceptance process.  I’ve never had the ‘why me?’ phase and I’ve never had the anger phase.  I think I was just so incredibly poorly that I didn’t have the energy for wasted emotions – when you ask ‘why me’ you also have to counter that with ‘why not me?’  I did do the bargaining phase, pleading with God to heal me in return for angelic behaviour, but I think God had his fingers in his ears.  To be fair He’s been a bit shit when it comes to helping me.

I didn’t lie down and wait to die, however.  I knew that even if full recovery wasn’t on the cards partial recovery might be possible so I worked towards that – you can read about my journey here.  I’ve always had a fighting spirit when it comes to my health and a determination to live my best life despite my limitations.  And, eventually, after a decade I did see improvement and am now classed as moderately affected rather than severe, which realistically means I am no longer bedridden even though I still have to spend large portions of the day in bed.

I think I’m lucky in that I accepted my disease fairly early on and feel so sad for people who, despite being ill for years and years, are still frantically searching the internet for a non-existent cure or some quick way of improving their situation.  There really isn’t one.

When I was 42 and received my Ehlers-Danlos diagnosis I felt nothing but relief.  I’d had health problems my entire life which had been dismissed by doctors and I’d been made to feel like I was either nuts, attention seeking or a hypochondriac.  I embraced my disease from day one and was actually thankful to finally have all the pieces of the jigsaw puzzle finally slot into place.

As with M.E., though, the first few years were a steep learning curve and I joined various forums to find out as much as I could.  I was still naive in that I thought a bit of physio and the odd brace or two would dramatically help my situation when nothing could be further from the truth.  I also thought I’d be helped by a team of knowledgeable doctors and specialists and of course that turned out to be a pipe dream too.  This time I was angry about that.  Here was a recognized genetic disease and no-one had a clue about it or how to help me.  It probably took about 3 years for me to realize that I was basically on my own and was going to have to manage the illness myself.  Having already had to do that in respect to my M.E. I was mightily pissed about the situation but looking back now 8 years down the line I recognise I was actually in the ‘cure me’ phase and hadn’t yet accepted that I had an incurable disease for which there is very little effective treatment bearing in mind I can’t exercise due to my M.E.

My reaction to having MCAD and HIT has been mixed.  When I initially received the diagnoses I was euphoric.  I was seriously ill and being told by local Doctors that I was either having a panic attack and needed some CBT or that I didn’t have cancer, wasn’t that great and sent packing.  Finally discovering that I was having anaphylaxis, was seriously ill and did actually have something wrong with my immune system was the best news ever.

I was reacting to everything I put in my mouth, even water, so afer I discovered what the problem was I embarked on yet another degree course this time on all things histamine.  Eating is vital for survival and I’d already dropped a tonne of weight so finding out about low histamine diets and trying to get my anaphylaxis under control was urgent and consumed my every waking minute for the first eighteen months.

I soon came to realize, however, that even less was known about HIT and MCAD than about hEDS and M.E. and most of what I read about low histamine diets was based on nothing but guesswork because hardly any research was being carried out into the histamine content of food.  I was sceptical about self-professed online ‘experts’ who were making money out of books and courses on lowering histamine because not only did they not have the other diseases from which I suffered, such as hEDS which is the cause of my mast cell problem, when you’re making a living out of something and depending on making a profit it’s hard to stay objective.  So after the initial euphoria I became hugely disillusioned and felt terribly alone and to some extent still do because I’m not under the care of a Consultant and my GP knows diddly squat about either disease.

By luck or by crook, however, I did manage to get my food reactions under control and it’s now rare for me to react to something I’ve eaten.  Four years later I’m more accepting of my MCAD and HIT but, unlike my M.E. and hEDS, I still feel some resentment that I have this extra burden on top of an already burdened life.  Food had been the one thing I could still enjoy and now that, too, has been taken away.  I suffer from daily pain, horrendous migraines and need surgery for my gynae issues but of course any form of treatment is out of the question due to my drug reactions.  That my body is denying me simple pain relief and the ability to eat what I like can make me massively depressed and there have been times over the last four years where I’ve honestly contemplated suicide because I feel so worn down by my health problems and the fact that life has been so hard for so long.  Thank God for my little dog who is often my only reason for living.

Having spent the first two years of my MCAD/HIT diagnosis obsessed by food and finally having my reactions under control I simply don’t want to have to think about it any more, which is why I’m not still writing about food here on my blog and barely ever mention diet.  I’m so over it I can’t even tell you.

Anyone who gets diagnosed with a chronic illness goes on a journey of emotions and that journey will be different for all of us.  The trick is to not get stuck at any point along the path and to end up at your final destination, which is acceptance of your situation so that you can get on with living the best life you can.

 

 

Weekly roundup

I started 2 new blog posts this week and had to abandon them because I’ve felt too rubbish to write anything.  I went to bed last Sunday night feeling like I’d got a little piece of toast or something sharp stuck in my throat………and woke up Monday morning swallowing razor blades.  I’d managed to pick up a throat virus, Lord knows where from cos I hadn’t been anywhere or seen anyone for days, but it made me feel absolutely crap and I spent Monday, Tuesday and much of Wednesday in bed feeling rotten and utterly exhausted.

I picked up a bit on Thursday only to start my period that night, which has made me feel totally zonked again both physically and mentally.  In particular I’ve been having evening vasomotor events (at least, I’m guessing that’s what they are) which I think are hot flushes only without the flushing (is that even possible?  Trust me to be different to every other woman on the planet!).  It’s the weirdest experience.  I feel kind’ve pricky all over then I get a whooshing sensation from my chest up and into my head accompanied by palpitations, which lasts a few minutes then goes only to come back again a few minutes later in a wave.  This can happen on and off all evening and is a bit frightening to be honest but as I’ve had them before and they’ve passed I can only assume it’s a Menopause thing.  I had no idea you could get hot flushes when still having regular periods, but having questioned Dr Google apparently it’s common.  Who knew?!

I’ve also had some stress re my eye situation.  Y’know I said that the Consultant at my local hospital referred me to the RVI at Newcastle, but they refused to see me saying the floaters “didn’t affect my vision”?  That was 3 weeks ago and this week I decided to write a letter of complaint to them which I did.  Only while it was in the post (they hadn’t received it yet) I received a letter from them with an appointment for September, after saying they wouldn’t see me.  WTF?!  So when they got my complaint letter they rang and left a message on my phone saying they are going to see me and why was I complaining?!  In the meantime my GP had agreed to refer me to the Sunderland Eye Infirmary instead so I got an appointment through from them, also for September.  It’s all totally bonkers.  Anyways, I’ve plumped for Sunderland even though it’s much harder for me to get to because the vitreoretinal department at the RVI obviously don’t know whether they’re coming or going, seeing me or not seeing me (no pun intended).

I don’t talk much about food on my blog these days, the reasons for which are in one of the blog posts I had to abandon (but will post when I have the brain power).  I have felt super exhausted the past 18 months, which was originally down to my un-treated iron deficiency and I now blame on the peri-menopause, and simply don’t have the energy to faff on in the kitchen for hours trying out new recipes.  But I’m sick to the back teeth of eating the same things day in and day out, so if I ever get my shit together I’m promising myself I’ll try out some new meals.  How I mourn the old days, when I could quickly rustle up pasta in a tuna sauce or make cheese on toast.

All in all I’ve had a fairly rubbish week much of which has been spent in bed and I have been bored to tears.  To pass the time I trawled through my back catalogue of photographs, seeing if there was something I could play with and I found some flamingo pictures I’d taken at a nature reserve a couple of years ago.  So I came up with a plan which involved me trying not to fall off the back of the sofa while hugging a sausage shaped draft excluder to simulate the bird, and ended up with this picture which I quite like.

My best mate said of the photo: “I like it, it’s really pretty, but you know you’re weird right and I worry for your mental health?  I hope you had the bloody curtains drawn in the lounge otherwise your neighbours will be sending for the men in white coats.”  BOL 😀