Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

I did something exciting this week.  My great-gran, my gran, my Mum and I all have an Essential Tremor and last year Mum and I applied to take part in the world’s largest study on the disease.  We initially had to fill out a detailed questionnaire and to be honest I thought they’d exclude my Mum because of her drinking and the amount of tablets she takes and me for the fact I have several other diseases, but after waiting for several months we found out we had been accepted into the trial.  So we were sent a prescription for a blood draw, along with phials and a pre-paid Fed-Ex envelope and on Tuesday we had our blood taken at our local NHS health centre (great they agreed to do it for nothing!) which we shipped off to France to be gene tested.  The actual trial is being done in Canada but I think anyone applying from Europe will send their blood to France who will forward the results to Montreal.  My Nan’s and Mum’s tremor was so bad by the time they were 70 they couldn’t write their own name so researchers have 20 years to find effective treatment so that I don’t suffer the same fate.

I’ve made a new friend at my Camera Club.  She’s absolutely lovely and very kind hearted, so we had lunch together this week and talked endlessly about all things photographic.  I know I bore non-photographers senseless with my hobby, so it’s nice to have someone to talk to who shares my passion.  It’s incredibly difficult to make new mates when you’re largely housebound and meeting new people was one of the reasons I joined my Camera Club, so after going for 4 years it’s fab that I’ve finally clicked with someone although as people we’re very different.

Thursday I went with my Dad to see the spinal consultant about his leg stiffness and weakness.  Despite finding several bulging discs and some spinal stenosis on his MRI scan the Doctor wasn’t concerned and said he’s definitely not a surgical candidate.  So he referred him for physio and that was that.  My Dad already had a physio appt for the next day and the physio was also unconcerned.  He just told him to walk as much as possible and dismissed him from the Clinic.  I’m not sure how walking, which my Dad already did loads of, is going to help spinal stenosis so I felt disappointed that he’s basically going to receive no help.

My Cleaner (who also walks my dog two days a week) has gone down with a lergie, so hasn’t been this week.  My house was minging so I had to clean it myself as best I could on top of taking the dog out in the snow.  It’s typical it coincided with my period week so I was feeling pretty rough, not least due to a three day migraine and a fainting spell brought on by stupidly low blood pressure.  It’s no fun having to go out in a freezing winter blizzard literally 30 minutes after you’ve passed out and thrown up and feel so weak you can hardly put one foot past the other.  Bertie didn’t care though – he loves the snow 😉

Speaking of The Curse I had only my second ever totally-pain free period in 38 years, hurrahhh!  I’d been feeling achy and grotty for a few days beforehand but when I actually started there was zero pain, when usually I’m in bed with two hot water bottles feeling physically sick it’s so bad.   To think that most women have periods which are that easy is mindblowing and if you are one of those women you have no idea how lucky you are.  I have been crippled every four weeks since the age of 11 due to endometriosis and adenomyosis and my periods have felt like a form of torture, which is why I’m so desperate for them to end.

Thursday I’d arranged with a women in the next village to photograph her daughter.  I was doing the shoot for free in return for using the photographs in competitions and was also giving her 2 free mounted prints, which is a good deal by anyone’s standards.  We’d arranged it in December but she didn’t turn up, telling me she simply forgot even though we’d only spoken about it 14 hours earlier, and it’s taken her this long to ring me to re-arrange.  So I spent an hour setting up the studio and gear at 5pm, my worst time of day when I’m usually in bed, then I waited for them to arrive.  And waited.  And waited.   You guessed it, she didn’t turn up again and I haven’t heard a word from her since.  She knows I’m ill and I’ve no idea how she has the gall to be so to be so rude and dismissive of my time and energy.  She’s shot herself in the foot though because she also clips my dog every 6 weeks and if she thinks I’m paying her to do that ever again she has another think coming.

Unrest is being shown tonight at my local cinema.  I downloaded it on iTunes the day it became available so have already seen it but my best friend, who’s had ME for 18 years, hasn’t so I asked if she wanted to go and she said no.  She has no interest in the film whatsoever which just goes to show how differently we all cope with chronic illness.  There is no right or wrong way.  Everyone’s experience is different.  Everyone’s needs are different and we should be allowed to react to our situation in our own unique and individual way.  Whatever gets you through the day.

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Weekly roundup

This week seems to have passed in a bit of a tired blur.  Bloody hormones, I do wish they’d bog off and leave me alone.   I type this with stomach ache, back ache, nausea, weariness, a weird head and a general yukkiness all because my period is imminent.  Knowing that the end is in sight, yet not quite being there, is so frustrating.  Pleeeease Menopause hurry it along so I don’t have to go through this crap every month.

My Uncle died on Friday, though it was expected and he was already in hospital.  It’s sad, but he’s suffered with awful ill health the past couple of years none of which was curable so even his children admit it’s a blessing. He’d had a long, healthy and happy life – you can’t ask for more than that.  It’s the Dad of my cousin with breast cancer, and to be honest I’m secretly pleased he’s passed away now so that she can bury him before her surgery at the start of February and then concentrate on getting herself well.

Despite feeling relentlessly rubbish I crossed something off my Bucket List this week.  I saw a Starling Murmuration up close and personal high on the Pennine fells.  OMG it was breathtaking.  It started with about 20 birds in a circle in the sky and within 5 minutes a thousand birds had appeared out of nowhere.  They danced and swooped almost silently, creating mesmerizing patterns in magical unison, and at one stage they were right above me so low I could have almost reached out and touched them – good job none of them needed the loo or I would have been pebbled dashed!

We were back at Camera Club on Wednesday night after our Christmas break and it was the judging of our annual Millennium Trophy competition, in which I came a respectable second.  The theme this year was ‘a panel of three’ so I tried something a bit experimental by simulating under water pictures.  The reason the judge gave for me not actually winning was that he didn’t like the fact the middle and right photos were dark at the bottom.  I was trying to convey the depth of the water but he thought it was unnecessary  – what does he know anyway 😉


As I’m aging, and as people around me die, I’m increasingly aware of how precious life is and how short.  Having been so ill all these years there is a probability that I will not live as long as if I’d been healthy and I have an urge to make every day count, so I’ve been looking for goals to set myself for 2018.  But they have to be things which don’t put me under pressure, things I enjoy and things I can physically achieve.  My first is to try for my next photographic distinction in November, which I think I’ve mentioned previously, and my second is to write more of my book which was shelved last year in favour of my photography and due to the health issues of my parents.  It’s tortuous going as I can only write one paragraph at a time, and then only on the days when my brain is clear enough, but I’ll keep plugging away because I’m determined to finish it and tell my story.

I received an email on Wednesday morning from the Lottery people.  “We have exciting news about your ticket.  Log in to your account as soon as possible.”  OMG I’m rich.  RICH!  So I log in with heart hammering and hands shaking……………to discover I’d won £4.30.  Guess I won’t be buying my own tropical island or hiring my own Chef any time soon then!

Weekly roundup

2018 has not got off to the start I’d hoped.  I wish I had a nice, happy, positive roundup post for you but sadly I’ve had a shitty week.  On New Year’s Day I had an anaphylactic reaction to the Famotidine (H2 antihistamine) I’ve been taking for my severe GERD (stomach acid).  It had been coming on for a couple of months, with anxiety, palpitations and muscle spasms after taking the tablet, but I’d been trying to ignore it in the hopes my mast cells would settle themselves down.  They refused and finally gave up on the drug last weekend.  Bugger.

My reflux is really bad and the pain of having my body’s equivalent of bleach eating away at my stomach and oesophagus day in and day out honestly makes me suicidal.  My nausea is also off the Richter Scale and my appetite has totally vanished.  Not to mention the appalling taste of battery acid which I now have in my mouth every second of the day and which burns my skin and tongue.

I also think the H2s have been helping with other things, such as muscle spasms and brain fog – I certainly feel much more spasmy since I stopped taking them and very foggy headed.  After all these years I am so sick and tired and being sick and tired I can’t even tell you, and spent the first few days of 2018 wishing I could have a massive heart attack in my sleep and not wake up, but that hasn’t happened so I’ll just have to find a way of coping with the symptoms.

I’ve now tried all the H2 drugs available and, while my body tolerates them for a year or so, eventually my mast cells throw a hissy fit and I become allergic.  I have no fucking clue what the problem is but it’s the same with any drug I take, no matter what it is.  So, yes, I could now progress to trying PPIs but every single day I would be worried about anaphylaxis – I either live with the pain and nausea or I live with horrendous anxiety.  Super.

To add insult to injury whatever I did to my neck in my sleep before Christmas is no better.  I’d hoped I’d just pulled something and it would settle but 3 weeks on it’s still hugely painful every single time I move my head or arms. I can’t be arsed seeing the Doctor (assuming I could get an appointment this side of Easter) as they would want to prescribe painkillers I can’t take or physio I can’t tolerate, so I’m just doing the usual icing, heating and spraying on Ibuleve gel (I can’t even reach to give it a good rub as it’s too painful to move my arms).

I am not a happy bunny and the week has not held any saving graces.

As if things weren’t bad enough, my Dad had some routine bloods done before Christmas in connection with his leg pain and weakness and the results showed that he has a low lymphocyte count (a type of white blood cell) and they also found kappa paraprotein.  There can be various reasons for this but tomorrow he has to take a urine sample in which will be tested for Bence Jones protein which detects blood cancer, so naturally we will be worried until we know the results.   At his age it is much more likely he has Monoclonal Gammopathy of Undetermined Significance (MGUS) and will just need to be monitored as statistically 1% of people with MGUS develop cancer each year, but it’s still something we didn’t expect and has come as a bit of a shock.  Luckily for my Dad he is totally clueless as to what’s going on and Mum and I haven’t discussed the possibility of cancer with him – it’s pointless worrying him (and due to his dementia he gets super anxious about the slightest thing) until we know more.

The only nice day I had this week was Thursday, when I made the journey through to the city to see my best mate.  She has been having issues with her hands which swell up and give her fingers like sausages.  Her skin is also dry, kind’ve lumpy and eczema like and no-one is quite sure what’s going on.  She had a scan which showed virtually all her finger joints were swollen, but her arthritis blood markers are all normal which is odd.  Anyways, on Thursday she had been booked in for allergy testing but they rang the day before to cancel it (for the second time) due to the crisis which is going on in the NHS, which left her day open so that we could have a catch-up.

Not wanting to sit in the house all day today on my own and dwell I’ve arranged for my folks to have Bertie for the morning and I am taking my hide down by the river to try and photograph a pair of Dippers I’ve spotted recently.  It’s bollock freezing cold, so I will need to be well wrapped up and have various heat pads secreted about my person, and it’s not going to be easy when I can barely move my head or left arm but it will pass the time.

Speaking of which I must get up, dressed, take the dog out, through to my parents and then get myself settled down by the river.  Or at least I would if I could stop sneezing.  I have been having a massive sneezing fit for the past 30 minutes, my nose is running like a tap and I’ve already gone through 2 man-size cotton hankies since I got up.  I swear if I’m starting with a cold it will be the last straw.

Aging, hEDS & Invisibility

I’ve rambled on a bit in this post, so you might need a brew and half an hour to spare 😉

As I’ve mentioned before on my blog it’s disappointing (I’m being polite) that there is virtually no information on the effect of aging on the hEDS population, despite the fact we’re all going to get old.  Quite why the over 50s are ignored when it comes to the management and progression of the disease is baffling because if we knew why some people’s illness progressed well while other’s progressed badly we’d know how effective management in younger adults actually was, but it still seems to be something none-one wants to explore.

According to the 2017 guidelines (known as nosology – why can’t plain english be used instead of medical jargon, the EDS charities need to improve on that) there are 3 phases to hEDS:

  • the hypermobility stage
  • the pain stage
  • the stiffness stage

though as far as I could determine this information is based on a pilot study of only 21 people, so why it made it into the new guidelines and is now relied upon by clinicians as fact is a bit of a  mystery.

Although I’m in agreement that, for most people, there are stages to having hEDS the 3 stages listed above don’t really tally with my illness experience.  In particular there needs to be a ‘menopause’ stage because there is overwhelming anecdotal evidence that many women don’t even know they have hEDS until they hit their 40s and their hormones begin to wane (I appreciate that men get hEDS too and their illness experience will be totally different).

For me, I had few symptoms of hEDS until I reached my late thirties.  Note I said “few” and not “none”.  I’ve had gut symptoms my entire life and I started having back pain at the age of 11 which resulted in surgery when I was 16, though it sadly didn’t cure the pain which has been ongoing ever since.  But on the whole, I was in the hypermobile stage until I was around 36.

For me the pain stage didn’t follow the hypermobile stage.  Nope, I skipped that and went straight to the stiffness stage.  Around my late thirties I noticed that my ankles were stiff in the mornings, to the point where I could barely walk to the loo.  Thankfully after an hour or so they loosened up but this was the first indicator that there was something wrong (I had no clue I had EDS at the time).  My back also stiffened up and I went from someone who could do backflips despite the ever present pain to someone who couldn’t bend to put her socks on virtually overnight.

At around the same time I was emerging from my 10 bedridden years with M.E. and starting to be more active.  It was then I noticed chronic, widespread pain.  It wasn’t joint pain, more an overall muscle pain which felt like my ligaments were tearing at even the smallest of daily tasks.  My fingers, wrists and elbows in particular burned constantly.

By the time I was 41 my feet and knees had joined in the pain party.  My neck was so stiff I couldn’t turn it to reverse the car and the range of movement in my hips had reduced down to 30% on the right side and 10% on the left.  When I suddenly starting sub-luxing my shoulder and jaw in my sleep I knew something other than M.E. was going on and fought for my EDS diagnosis.

Despite all the stiffness and pain, however, I remained hypermobile in my peripheral joints.  I can still touch my nose with my tongue, do the reverse Nemaska, bend my fingers to 90 degrees and do all the other party tricks I always have.  My hips, neck and back are a different kettle of fish, though, and the range of movement in my spine diminished rapidly the second I hit 40.

For me, the stiffness and pain stages happened simultaneously and I’m as certain as I can be that they arrived because I was entering peri-menopause.  There is an urgent need to study women with hEDS in their 40s because there are hormone drugs already on the market which might help stave off the deterioration which seems to happen when women reach peri-menopause.  The physio given to younger women simply doesn’t work when you’re middle aged and I find it infuriating that all the management advice is aimed at children and younger adults.  My muscles and ligaments have changed beyond all recognition as I’ve aged and there is a dire need to look at why and how we can best manage EDS in the middle aged and elderly.

I am now 50 and in the late stages of peri-menopause.  When I’m resting my pain levels are fine, apart from my back which hurts no matter what I do, but the second I start to do anything the burning and stinging in my muscles starts, consequently I can’t continue activity anywhere near as long as I could a decade ago as the pain simply becomes too much.  My stiffness has also ramped up a notch or ten.  Far from being confined to certain joints it’s now widespread and there are days when I can barely move first thing in the morning.  My body doesn’t loosen up anywhere near as quickly either and the stiffness lingers throughout the day.  I have to sit to put on socks and shoes, can barely move my head left or right, can’t chop vegetables, struggle to put on jumpers and walking the dog is like climbing the north face of the Eiger in terms of strain and effort.  I “uuuumpf” when I get up out of the chair and can crouch down to pick something up off the floor but can’t get back up again.  I literally have the body of an 80 year old.  Scratch that – my Dad is more supple than me and he is 80!

The only other information I could find about the phases of hEDS came from the UK’s Royal College of Physicians and states ” The final phase is the emergence of psychosocial sequelae such as anxiety or depression, obesity (often associated with comfort eating), work incapacity, isolation and despair. At this stage, there is often a downward spiral of loss of mobility, self-efficacy and self-esteem as the quality of life diminishes” though there is no citation or link to the research on which this statement is based.  Where is the hard data which shows that as we Zebras get older we all become depressed, obese and live in despair, because if that information isn’t available the Royal College should be ashamed of themselves for putting this crap out there.  For a start menopausal women tend to gain weight even among the healthy population (as do men over 50), so unless they can demonstrate via well-controlled clinical studies that weight gain is solely down to the progression of hEDS it is irrelevant, and for a second thing women tend to gain self-esteem as they age not lose it, it’s one of the few perks of getting old!  My body may have fallen apart during my 40s but I’m happier than I have ever been and have more zest for life, not less.  I’m so appalled at the statements made in this piece of mis-information I can barely bring myself to include it, but if this is what our health professionals are reading and basing their views on we need to know about it.  It’s a shame really because the article is otherwise sound, if now a little dated.

Going slightly off topic, the UK hypermobility charities are currently fundraising to research the effect of diet on the symptoms of hEDS and hypermobility spectrum disorders and I admit I am not happy.  We don’t even know the basics of these conditions, so to look at food intake as a means of treatment feels like we’re putting the cart before the horse.  There is no epidemiological information on connective tissue disorders (CTDs), ie how common they truly are in the general population, the ratio of the sexes, at what age diagnosis is obtained or anything about outcome.  We have no clue about progression, or how far the family link extends.  We don’t even test adequately – all people with suspected connective tissue disease should be gene tested, not least to rule out other types of CTD or Marfans’s Syndrome, and this data put in a bank for study – how else are we ever going to find the gene responsible for hEDS?  It’s this basic kind of information which forms the building blocks for research into any disease and data researchers often need when studying illness.  No food is ever going to cure my spinal stenosis or my dental overcrowding, my hernia or my genetic predisposition to Osteoporosis.   It also doesn’t help us understand why many people with hEDS also have mast cell disease, POTS or M.E., or why puberty and the menopause affects sufferers so profoundly, information much more vital and fundamental to our knowledge of EDS in my very humble, but hugely invested, opinion.  For the estimated 10% of us Zebras with MCAS, and who are usually on a restricted diet, altering the foods we eat may be impossible in any event.  Yes we need to look at treatment but only once we have a proper grasp of the disease, its incidence and progression.  Which isn’t as hard to do as you’d think.

I remember back in the late 1990s when very little was known about M.E. and severely affected  patients were completely ignored, Action for M.E. (Britain’s 2nd largest M.E. charity) sent out a survey with its regular magazine to all of its members and received approx 2,300 replies.  The results led to a report called ‘Severely Neglected: M.E. in the UK’ which was the largest ever survey done on the disease.  It turned much of the information ‘out there’ on its head, made a massive impact on our understanding of the prevalence and impact of severe M.E. and became hugely influential when NHS Clinics to treat patients were eventually established.  Over the last two decades, the ME Association have also regularly sent out questionnaires with their quarterly magazine on a wide range of topics, and run a monthly quick survey on their website for anyone with the illness to fill in not just members, all of which have helped our understanding of M.E.   Surveys aren’t difficult to do, although collating the data is time consuming, and I really don’t see why the EDS charities don’t do something similar – at least then we’d know some basic information, such as the percentage of men v women, how many people are receiving no treatment, what treatments people had found effective, progression and if ethnicity is a factor (which might help in the quest for the hEDS gene).

It appears to me, and obviously this is only a personal opinion and observation, that the EDS world shies away from asking the hard questions and I’m not quite sure why that is.  It’s great that children are being diagnosed with hEDS sooner, but appalling that older people are still being completely ignored despite the fact we are often at the more severe end of the spectrum as our bodies age and naturally deteriorate.

I’m fed up of being ignored.  I was ignored as a severely affected M.E. patients for years, as the emphasis was put on those at the mild end of the spectrum because they were well enough to campaign and be more vocal.  I’m totally ignored as an MCAS patient, receiving no monitoring or treatment whatsoever.  As an older person with hEDS I’m also ignored, for reasons I can’t quite work out.  And the fact I live in the north of England (by which I don’t mean Manchester, there is life beyond!)  with any of these diseases means I might as well not exist.  I can’t name one single EDS event which has taken place north of Birmingham and anyone living in northern Ireland or Scotland must feel completely invisible, a situation which is simply unacceptable.

 

 

The Need To Create

When I was seeing the Counsellor last Christmas about the situation with my Mum, she said to me “OK, so what creative pursuit do you follow?  I know you do something because you couldn’t have survived your life otherwise and stayed sane.”  Her insight took me aback.  I hadn’t realized how much I rely on my creativity.  It’s a huge distraction, gives me a goal, purpose, challenges and connects me to the world from my bed.

As a child, reading books literally saved my life.  I could lose myself in a story, taking a break from the chaos of my life.  But I’ve also always been artistic, spending hours as a young child drawing and colouring.  My Mum taught me both to knit and crochet when I was really little and I knitted all my doll’s clothes as a kid.  When I went to primary school we had compulsive home economic lessons (while the boy’s did woodwork!) and it was there I was taught to sew, tiny delicate embroidery stitches which took hours to perfect.  I love having the ability to create something out of nothing.

After I left school I was way too busy for hobbies and, reading aside, my creative pursuits were put on the back burner though I used my creativity in other ways, renovating my Victorian house and tarting up old furniture as I couldn’t afford to buy new.  When I became ill, however, all that changed.  I had to find a way of passing the endless tortured hours, so went back to embroidery this time buying kits and making tapestry cushions which took months (sometimes years) to finish as I could only do little bits at a time, and which I gave as gifts for Christmas and birthdays.

A decade on and my joints were becoming ever more painful, so I gave up the embroidery and took up crocheting which I find easier.  I discovered the charity knit-a-square and now regularly make beanie hats and fingerless gloves to help AIDS orphans in Africa.  They also take simple knitted or crocheted squares which they make into blankets – there are a few patterns on their website but if you’re going to send something please only make items they need.  That I can still be useful, help others less fortunate than myself and contribute to the world is incredibly important to me.

Before my MCAS & HIT diagnoses when I was having anaphylactic symptoms every time I ate and living life in a permanent state of palpitations, muscle spasms, nausea and anxiety, I crocheted for hours on end.  I find it very soothing, even if the repetitiveness killed my hands and wrists!  It’s really easy to learn too, with only 1 basic stitch which is modified, so if you fancy giving it a go I’m sure there’s a YouTube video somewhere which would teach you.

Of course, I then discovered photography which I simply love although it is something I can only do on the days I feel well enough to be up and about.  I admit to feeling a bit guilty about my photography, though, because it benefits no-one but me unlike my sewing and crocheting which are given to other people, but we all need something which is just ours and photography has taken the place books used to fill (my brain has been too poorly to read for over twenty years now).  And having taken the photographs I can edit them in bed using Photoshop, brain fog permitting.

When we’re chronically ill we all find individual ways of coping and remaining creative has been a big part of that for me.  It’s also a great distraction and if I make something usable at the end of it then so much the better.  I’ve found that many of my ill friends are creative in some way or another: they make beautiful jewellery, cards which are sold for charity, are crafters or fellow photographers.  That we can make art despite the most dire of circumstances is a testament to our spirits and our innate need to connect with the world, and each other.

New Year Roundup

I know some of you are wondering how the situation is going with my parents, so I thought I’d do an update.  My Mum kind’ve thought that I’d have a blow out, take a week to get over it and everything would go back to normal but I simply can’t do that and would have some kind of breakdown if I tried.  So things have definitely changed and I have taken a huge step back from my parents.

I told them both that I love them and that I will take care of them, but I am not visiting socially four times a week like I used to – not for a while anyway.  I told them that my Mum’s drinking,  listening to their constant bickering, my Mum’s bitching and bullying, and never knowing what kind of mood they’d both be in was making me physically and mentally ill and I was no longer prepared to deal with it.

I used to ring them every morning at 9am to check how they were and what they were doing that day, but I’ve stopped the phone call.  If they need me they know where I am.  My Mum still rings me most days for a chat, which is lovely, and initially I felt really guilty that I wasn’t checking up on them however I know that my step-brother rings most days anyway so I knew they weren’t being left in isolation.  He needs to take more responsibility for them in any event and take some of the weight off my shoulders.

My Mum isn’t drinking anywhere near as much as she was, though she is still drinking.  On Christmas Day I went there for lunch and she had a large glass of Baileys with her meal.  Only the one, but even so.  That she couldn’t not drink despite the fact she nearly lost her only daughter over her alcoholism saddens, but doesn’t surprise, me.  The fact that my Dad had obviously wheeled her down the alcohol aisle at the supermarket to buy the Baileys also makes me sad – I have no idea where his backbone is in standing up to her (my Dad rarely drinks btw and had lemonade the same as me at Christmas lunch).  I’m very conscious that there is now a large opened bottle of booze in the kitchen which is going to have to be drunk and where that will lead.  I’m just letting them get on with it.  They are grown-ups and it’s not up to me to tell them how to live.  They are both aware of the consequences of their actions and have chosen drink over their relationship with me, a fact which I try not to be mortally wounded by.

I am still taking care of them, however – my conscience wouldn’t let me not because whatever their faults they are old, ill, vulnerable and my parents.  I went with my Dad to his back appointment the week before Christmas and rang about his blood results.  I also offered to take my Mum to her lung appointment on 29th December.  Over Christmas I set their new broadband connection up, renewed Mum’s stairlift insurance and took their electricity meter readings.  They physically couldn’t manage without me – I know it and they know it, and I think we both feel stuck in the situation.

I have loved not having to deal with them so much.  I’ve felt relaxed for the first time in years and finally feel rested – I’d forgotten what that feels like.   I still fight the guilt that I am not spending more time with them but then habits that have existed for years are hard to break.  It’s been wonderful, though, to just be able to do whatever I like for a change and not have to think about them or work around their schedules.

So there we are.  I have no idea what the future will hold because we’ve had some worrying blood results in respect of my Dad and if it turns out that he’s seriously ill everything will change so I’m just taking it a day at a time.

So my Christmas week was quiet and uneventful, just the way I like it.  I’ve spent some time preparing a photography talk which I’m giving at Camera Club next season and trying out my new flash light in my spare bedroom but other than that I’ve just chilled.  Saturday was sadly a right-off as I had one of the worst migraines I’ve had in ages, complete with awful dizziness and vomiting, and the headache and hangover from that is lingering today so I’m expecting a second day in bed being bored and a bit fed up but such is life.  Tomorrow is another day.  Nay, another year!  I have told my Camera Club that I am going to try for my next photographic distinction, the DPAGB, in November so that’s my goal for 2018.  I’m also facing a new battle with my insurance company and am opening a new case with the Financial Ombudsman next week.  So the year already holds goals, challenges and endless possibilities and I am looking forward to every one 🙂  Happy New Year!

 

Health-care sexism

Jen Brea, creator of the M.E. docu-film Unrest, had an article published in the Boston Globe recently which talked about the bias women face in the health-care system.  About how auto-immune diseases, which predominantly (but not exclusively) affect women, attract the least funding of virtually any illness on the planet and about how women are much more likely to be told their symptoms are ‘all in their head’ compared to men.

Her article was shared on Facebook and attracted comments which said she was “dividing the M.E. community” to weaken our collective voice, that it is not a men v women issue and that such rhetoric isolates men.  These comments miss the point entirely.

Jen is not saying that M.E. doesn’t affect men, or that men are never told their symptoms are psychological, but the truth is that around 80% of M.E. sufferers (and auto-immune diseases in general)  are women and that women are historically less likely than men to be taken seriously within the health care system.  It’s just a fact, like the sky is blue, and ignoring it won’t make it go away.

Funnily enough, I was talking to my Mum yesterday before I read Jen’s article about the different way she is treated compared to my Dad.  Last year they were both asked for routine urine samples and both contained blood.  My Dad was immediately put on antibiotics.  My Mum received no treatment whatsoever.  What the hell is that all about?!

My Mum has severe and progressive COPD, is missing half a lung and has Emphysemia yet was dismissed from the lung clinic 4 years ago.  They were so gobsmacked about that when she was in hospital recently with her Guillain Barre the consultant immediately re-admitted her to the lung clinic so that her lungs could be monitored.  My Dad, OTOH, who has never spent a single day in hospital in his entire life and who is fit as a Mally Bull has recently had some moderate leg pain and weakness.  Within a month he’d had a Doppler scan, an MRI scan, a full blood work up which is being repeated in 3 months time and already has an appointment for physiotherapy and a referral to the spinal team.  Which is great, but it’s not like he’s going to die from a bad back…….unlike my Mum who is absolutely dying from heart failure, kidney failure and lung disease yet is not even being monitored let alone treated.

Baldness in men receives six times more research funding than M.E.. The fact that vain men are losing their hair and might not look at pretty as they did in the twenties is six times more important to our health authorities than the fact that millions of (predominantly) women all over the world are bedridden or in wheelchairs for the rest of their lives.  Are we not even supposed to discuss this?  And if not, why not?

When I’ve discussed the inequality of women here on my blog I’ve had comments from other women saying it’s not as bad as I make it out to be because they haven’t experienced it. Good for them that they are middle class, educated and living in America.  Not poor and living in the Yemen or Saudi Arabia, or having their clitoris cut off because of their religious beliefs, or working in the same job as a man at the BBC yet being paid 1/3 less than him, or being raped because they want to work in the film industry, or being paid 7 years less health insurance because they were born with a vagina and not a penis.

That anyone would criticize Jen for merely stating a fact gobsmacks me.  That the criticism would come from women appalls me.  Jen is not denigrating men or dismissing their experience, she is standing up for women and she should.  We all should.