Author Archives: Jak

The never ending Peri

When my periods first started to change back in 2012 at the age of 44 and I realized I had probably started peri-menopause, I wanted to know about other women’s experiences.  There were legions of horror stories online, very little about the positive and hardly any actual hard data.  “It’s different for everyone” was a common theme, which is all well and good but I still wanted to know what was physically happening to other women to give me some companionship in my own journey through The Change.   However, I found nothing online so started keeping a chart on my cycle length as well as notes on my symptoms and I now have another 12 months worth of data to share with you.

I’ll start off with my first chart.  I’d been a regular 27/28 day cycle person my entire life but in 2012 my cycle length started to subtly change and I initially experienced slightly longer cycles than usual.  The red line indicates 28 days – click on each chart for a larger view.

MC2012


In 2013 things went totally haywire.  As you can see from the chart below I basically had alternating long and short cycles, with a couple of very short cycles (for me at any rate).  I had my first daytime hot flush this year, but only the one, and no other real symptoms.  I did have my FSH level tested and it came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.  However, it was in this year that my previously unknown mast cell disease exploded and I was very unwell.

MC2013


In 2014 my cycles were still abnormal, but not quite as erratic as the year before.  Again, no other symptoms of peri-menopause that I could put my finger on.  By now I’d started on a low histamine diet and thankfully had stopped passing out every time I ate.  Many of my other MCAS symptoms remained, however, and continue to this day.

MC2014


The start of 2015 saw my cycles even out, only to become erratic again in the second half of the year.  I also saw a couple of symptoms appear – vaginal dryness around my period, which doesn’t half make your ladygarden itch and is well uncomfortable as your undies rub against your bits, and changes in my mood.  I had sudden and inexplicable rages which were absolutely overwhelming.  Having never suffered from PMT I found being so out of control of my emotions really difficult, though thankfully the hooha only usually lasted a day or two around my period.

mc2015


In 2016 I continued to have vaginal dryness and mood changes, but the dreadful rages I felt in 2015 thankfully disappeared.  I did still have a short fuse at certain times in the month but it was nothing I couldn’t control.  I also had some really weepy episodes, usually in the few days before my period started and by the end of the year was starting to feel quite overwhelmed.  As someone who usually has very stable moods this was unusual for me.  I didn’t know how much was down to the perimenopause and how much was down to what was going on in my personal life, ie the situations with my parents and my Mum’s drinking, so decided to see a therapist to help me work through it.  Three months later and I was feeling much calmer, so you really shouldn’t put everything down to your hormones!

mc2016


In 2017 my periods became even more erratic.  My moods had fairly much evened out, though, and I was back to feeling more like myself despite episodes of anxiety for no apparent reason which is fairly common in peri-menopause.  I still hadn’t had any hot flushes, though my sleep was definitely affected and there were times I struggled with insomnia.  I did have some wicked skipped heartbeats and palpitations, though, and in the end had this checked out by wearing a 24 hour holter monitor and it show up on the trace but was put down to peri-menopause and not any kind of heart issue.  My migraines around ovulation and menstruation definitely became worse and could last for days which was crippling.  My energy levels took a nosedive and my brain fog some days was dreadful, however this may have be due to the fact that I was borderline anaemic rather than being solely down to my hormones.  Two other symptoms I noticed this year were weight gain and very painful, itchy breasts which were checked out via mammogram and were thankfully fine.


In late 2017 I started taking iron supplements for my low ferritin levels and my insomnia and exhaustion improved.  In fact, my sleep during 2018 was the best it’s been in 25 years for which I am grateful beyond words.  I continued to struggle with weight gain despite eating the same amount of food, though I did have the rampant munchies and know I ate more sweets and crisps than I should have 😉  I still didn’t have any hot flushes, however I had some very scary episodes of feeling like was having a stroke which I put down to vasomotor issues – about 5 in one year, which doesn’t sound a lot but they frightened the life out of me.   My skin was becoming much drier and I developed jowls on my face – I now avoid mirrors first thing in a morning because I look like my Nan!


During 2018 and the early part of 2019 the trend for erratic periods has continued (ignore the months on the chart as I no longer have a period every 28 days so the months now don’t tally!).  I had my shortest cycle to date at 12 days and my first missed period and thought “hurrahh, I’m finally going to reach menopause” only for Aunt Flo to continue her visits as usual.  Bugger it.  I have been profoundly tired and often horribly brain fogged and confused again in the last year and really should get my iron levels re-checked – the more tired I am the less well I can cook and then I don’t eat as much iron-rich food as I should.  My migraines have also been the worst in years, which is so disappointing as they had settled down quite well since going on a low histamine diet.  My weight seems to have stabilized even though I’m now 10lbs heavier than I’d like to be, but I do have to be careful what I eat and certainly can’t eat the portion sizes I always have.  I’ve had a few more of the stroke-like attacks, which I still think are hot flushes in disguise, and am definitely hotter in general than I used to be particularly first thing in a morning.  My skin is now very dry and my ladygarden is very itchy (though not dry as yet).  In 2019 my joints started to constantly hurt and if I do any kind of activity I tear my ligaments.  However, I’m still sleeping really well most of the time which is the biggest blessing from all this hormone malarkey.

So, my peri-menopause seems to be trundling along at a snail’s pace and, despite the fact I will shortly be 52, there is no sign that my periods are imminently going to end.  I’m having many of the symptoms of peri-menopause, but so far they’re nowhere near as bad as I was expecting and nothing like the horror stories I’ve read about online.  They can be annoying but are manageable and it helps that I know what’s happening and that it will all eventually pass.  Everything that’s happening to me is normal and to be expected – very few women just stop their periods with no symptoms at all and I’m happy for nature to just take its course.  Howwever this all may change as the actual Menopause arrives and I’ll probably end up reaching for the Prozac and the desk fan, but so far so good!

 

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Menopause Myths

It’s brilliant that the Menopause has finally been hauled out of the closet and is being talked about, although the peri-menopause is still lurking in the shadows.  The fact these fundamental female issues have been ignored since the dawn of time is scandalous and you can guarantee if they happened to every man on the planet we’d know a shit load more about them than we do.

I read a truly excellent article on Menopause recently and if you’re interested in the subject it’s well worth a look.  The more I learn about this monumental change in women’s lives the more livid I become.  In the article, trainee GP Hannah Short states “The menopause wasn’t in any of my textbooks”.   Say what?!   A biological process which causes problems for over 70% of women often for the rest of their lives doesn’t even rate one sentence in the training of our health care providers?  It’s insanity.

The myths surrounding Menopause are legendary, so I thought I’d highlight a few:

  • It’s a natural process, not a disease, and doesn’t require treatment.
    Pregnancy and childbirth are natural processes, but that doesn’t mean expectant mothers don’t need monitoring, advice, sometimes medical intervention or any kind of health care.  Men’s prostate function declines as they age, and ageing is a natural process, yet they are still placed on prostate drugs when they have to get up 5 times a night to pee.  In other words, all sorts of issues can be put down to ‘natural processes’ but that doesn’t mean we ignore them and offer no help, guidance or treatment.
  • The Menopause lasts approximately 2 years.
    This is a blatant lie.  For a start, most women experience peri-menopause (winding down of hormones) before the actual menopause (periods ending) and the peri-menopause can last anywhere from 2-10 years.  I’m in year 7 and my periods are still regular, if totally haywire.  Virtually nothing is known about peri-menopause as nearly all the limited research has been conducted on menopausal women, not on peri-menopausal women.
  • The Menopause begins in your late forties.
    Having read many menopause forums now, I can categorically state that for many women this is absolutely not true.  It seems to be quite common to experience the first symptoms of peri-menopause in your late thirties, a fact not recognized by most health care professionals.  My periods started to behave differently when I was 44, and my best friend started noticing changes aged 41.  When it comes to actual menopause, see the next point.
  • The average age of Menopause in the UK is 51.
    I appreciate the word ‘average’ is being used, but it kind’ve gives the impression that your periods will end between the ages of 50 and 52 and that isn’t born out by the experience of my female relatives.  My mum was 54 when her periods stopped.  Three of my cousins all had their last period by the age of 49.  My sister-in-law went through menopause at 46, my other sister-in-law was 53 and my next door neighbour was 54.   I’ll shortly be 52 and my periods are showing no signs of ending.  And that’s just a small sample of the differences experienced.
  • The earlier you start your periods the earlier you will reach Menopause.
    Virtually no research has been conducted on this, but from the little information available this appears not to be the case.  I started my periods aged 11 and at the age of 51 am still menstruating.  The three cousins I mentioned above all started their periods in their mid teens yet all reached menopause before the age of 50.   So I can certainly say in our case this is a myth.
  • There is a blood test to tell you if you are in Menopause.
    If you live in the UK and think you might be in peri-menopause there is no test which will confirm this for you.  FSH (follicle stimulating hormone) can be used to check your status but if you’re over the age of 45 and having peri-menopausal symptoms your GP won’t offer it to you as it’s considered unnecessary.  If you are under the age of 45 and showing peri- menopause symptoms you may be offered the test, but unless you are on the brink of actual menopause the results will be about as much use as a chocolate fireguard as your FSH can swing wildly during peri-menopause.  So realistically there is no blood test to indicate you are in peri-menopause and if you’re in actual menopause you don’t need a blood test to tell you your periods have stopped.  It’s a crap situation which desperately needs addressing.
  • There are no treatments for Menopause.
    When you Google peri-menopause and menopause you get all the usual shite about drinking more water, eating better and taking more exercise.  Why is there an assumption that middle-aged women are alcoholic couch potatoes who live on chicken nuggets and curly fries?!  It’s so insulting, as most of us lead incredibly healthy lifestyles and are very careful about diet and exercise as we are putting on weight without trying (a consequence of our declining hormones).  There are hormonal options for treating the symptoms of peri-menopause and menopause (HRT and testosterone replacement) although they are currently crude.  Finding a doctor with any decent knowledge of them, however, is rare.  There are only 2 hormone clinics in the whole of the North of England serving 2.5 million peri-menopausal and menopausal women.  Of course, not all will need treatment but as 70% of women experience problematic symptoms it’s obviously a vastly under-resourced area.  Your GP may prescribe HRT (but not testosterone) and then again they may not – confusing research on the risks of cancer due to HRT has caused reticence.  You absolutely won’t be offered bioidentical hormones on the NHS and realistically are more likely to be offered antidepressants than anything.
  • Symptoms go when you are through the other side of Menopause.
    This is the biggest myth of all.  My Mum asked me the other week if I could get anything at Tesco to help with vaginal dryness and itching.  “Why, are you having problems?” I asked her.  “I’ve been having problems since my periods stopped” came the reply – she’s now 79.  She also still has hot flushes and so too did my 76 year old paternal grandmother, who used to sweat so much every day of her life that it dripped off her chin end.  The information on what happens post-menopause is virtually non-existent and more women than we realize have menopause symptoms until the day they die.

That so little is known about peri-menopause, menopause and post-menopause is shocking but unsurprising.  Issues which solely affect women have historically been ignored and those women experiencing problems have been told it’s their fault for lacking the constitution to cope with this ‘natural’ change.  We are clearly mentally fragile and overly emotional.   Bollocks is what I say to that.  If men went through a fifth of what women deal with the country would come to a grinding halt.

I hope in the current climate of female freedom of expression that health issues which affect women will finally start to be researched.  However, truly effective treatments are decades away.  There are really easy things that could be done now, however, to improve the situation such as regularly checking women’s ferritin levels as many of us are iron deficient during both puberty and peri-menopause.  Even that simple measure doesn’t happen though and women are basically just left to get on with it and to cope the best we can.

Weekly roundup

I get the feeling that someone ‘up there’ doesn’t like me.  I know people who sail through life, whereas if something can go wrong in mine it will.  I am due to see Dr Sargur at Sheffield on 27th June.  He is one of only a handful of NHS Consultants in the country now treating MCAS patients and has a good reputation on forums. The appointment is for 11am and it’s a 3 hour train journey, so I decided to go the day before and have booked a hotel room and my return train tickets.  Then this week, I receive a letter saying that “now the consultant has seen your GP’s letter he has decided it’s an inappropriate referral and has cancelled your appointment”.  WTF?!  I sat on the stairs and cried.  I have had no treatment or advice on my MCAS since I was diagnosed 6 years ago and am currently having some symptoms which are worrying me (I still have the swellings under my armpit and in my elbow).  I’ve also lost £100 on my hotel room (a huge amount of money to me) as it was non-refundable and have no clue if I’ll get a refund on my train fare.  I now need to speak to my GP as to where I go from here, but in the meantime I’m going to write to the Consultant and explain my situation.  I thought we had a legal right to be treated by any hospital and consultant we choose, particularly when there are zero specialists locally.  People who live in rural areas are completely discriminated against when it comes to health-care and it is not on.

I have had to fight for every ounce of care I’ve ever received and I am exhausted.  More than that, I feel beaten.  On top of  the18 months I’ve just spent fighting for help for my Dad and getting nowhere I just don’t know if I have any fight left in me to tackle the situation.

I was supposed to hear from D&G about my fridge/freezer insurance complaint by last Friday but of course have heard diddly squat.  They will be deliberately taking their time in the hopes I will cave and buy a new fridge so they won’t have to fork out for one.  The fuckers!  I’m giving them 5 more days to replace my appliance then am opening a complaint with the Ombudsman, and will also be writing to the FCA and informing them of the tactics used.

It was my Mum’s 79th birthday this week.  She had her ears pierced 30 years ago but for some reason along the way had stopped wearing earings and the holes had closed up, so she asked for them to be re-done for her present.  My folks, Bertie and I went out for lunch and actually all really enjoyed it which makes a change – the fact my Mum decided not to drink probably had something to do with it.

On Friday I went to my elderly friends’ house to fill in forms for Attendance Allowance, which is a welfare benefit payable if you need help with daily living and are over 65.  No-one tells you about your entitlement to AA and my friend had never heard of it despite being regularly seen by his GP, physios, OTs and the falls team.  It’s a disgrace that elderly people aren’t told about the benefits they can claim, despite paying into them all their working lives.  Even when you do know about it the 31 page form is so daunting it puts most people off and if I hadn’t have filled it in for him my friend would just have binned his application.

I’m mid-cycle and have spent the entire weekend with a migraine, which also makes me nauseous and generally bleugh.  I seem to be getting them more than usual this year which I’m putting down to my fluctuating peri-menopausal hormones.  Please God just make it stop.   The weather is also atrocious for June – yesterday it was only 11C and it has rained most of the week.  I am ready for summer, fed up of being stuck in the house and just wish the sun would put in an appearance.

Well, that was a totally whingy post wasn’t it?!  I wish I had something positive to end on but I don’t 😉  This week has felt like an uphill struggle and after 25 years of uphill struggle I’m pretty much knackered.  I did try hard to win the £120 million euro jackpot on Friday night but failed miserably.  All I can do is trudge on and hope that this week is better.

 

 

 

Is there anybody there?

This post is totally un-health related, but I had to share with you what’s been happening.  I moved to my current property, a 300-year-old converted farm building, fifteen years ago.  Before that  I lived in a 100-year-old Victorian town house and had no issues there.

From day one in this property, though, things have moved around.  Magazines weren’t where I left them, objects would appear in strange places and other objects have disappeared never to be seen again.  However, I could always come up with a rational explanation – I’m very forgetful, I’m hormonal and doing daft things like putting my car keys in the fridge, plus I’m aware I sleep walk and could potentially move items around in the night.

The electrics have also always been dodgy in this house.  I get a LOT of power problems, such as the lights flickering, and the bulbs blow in my lounge constantly.  Again, there is a logical explanation – the village is on a bit of a crappy power supply, plus my home probably needs rewiring.

Recently, though, stuff has been happening which I’m struggling more to explain.  I have Sky TV and a few months ago I was looking for something to watch on my planner when I saw that Top Gear had been recorded.  I loath Top Gear and it is the last telly programme I would ever tape.  I just brushed it off as something which had happened by mistake, until a few weeks later when  I realized my planner had recorded the Murdoch Mysteries and series linked it!  The same day, an energy saving bulb I put in my hall 6 months ago, and which is supposed to last years, blew.

Shortly after that, an overbed lamp stopped working.   I changed the bulb, no joy.   I changed the fuse, still no joy. So I gave up and thought I’d have to bin it.  Then after three days it suddenly came back on all on its own and has worked fine ever since.

Yesterday, things ramped up a notch or two.  I was putting some clothes away in my bedroom drawers when I heard a weird noise, which sounded like it came from the corner of my room.  It was a cross between a growl and the sound of air when you do a huge sigh.  It was quite distinct and fairly loud and made me jump.  I reasoned it was coming from outside and just sounded like it was in the room!  However, last night around 7pm I was propped up in bed editing some pictures when I heard the sound again and at the same time the cord hanging down from my window blind started swinging backwards and forwards by a good 4 inches – I mean, it was properly moving.  And to cap it all, one of the lights over the sink in my bedroom now isn’t working!  I must admit, I was a bit uneasy turning the lights off to go to sleep :-/

I don’t know what to make of any of the above.  I have been under huge stress recently and I’m sure there’s probably a logical explanation for everything, but yesterday’s antics have freaked me out a bit I must admit.  They say animals are psychic and pick up on energy in a house, but Bertie doesn’t seem to be bothered by anything and slept through the growl and the swinging chord like a baby – the feckless article 😀  I’ll keep you posted if anything else happens!

Love me for who I am

I was having breakfast with an elderly, male friend yesterday and he looked at me and said “do you never wear makeup, or jewellery?”.  The question took me aback.  It was 9.45 on a Sunday morning, we’re sat in a cafe in a tiny rural farming village and I had just walked (aka scootered) my dog for 3 miles in the rain – why on earth would I be dolled up?!  So I just looked at him and said “why, do I need adornments?  Am I not perfect just as I am?”  which threw him, because it’s not like he could say “no you look like shit and need artificial help” 😉  I wouldn’t care, but because of my wig my hair always looks immaculate and due to my lovely, unblemished hEDS skin I look 10 years younger than I actually am, which is pretty darned good for a chronically ill 51 year old even though I do say so myself.

My whole life, men have wanted a perfect version of me.  That’s because they are drawn to me because of how I look, not for who I am on the inside.  It didn’t matter to my biological Dad that I was the most intelligent kid at school, and it didn’t matter to my ex-husband that I was the most attractive woman in any room, it was never enough.  I was never enough.  That incorrect judgement, which started when I was a self-conscious teenager, changed how I thought of myself until I was in my forties, and it’s taken until I am in my 50s for me to challenge the kinds of statements my friend made to me this morning.

One of the reasons I have been single since I became ill 25 years ago is that men struggle to accept my disabled life.   Despite being told of my limitations there is constant pressure to join in their healthy life, and early on in my illness I did try.  I made myself horrendously ill going out for dinner in the evenings, going for walks in the countryside and travelling for hours in a car that made me vomit to the point of dehydration….. but not any more.  Y’see, there is never any desire on their part to join in my disabled life.  To sacrifice their precious time off work to lie in bed watching B list movies when the sun is shining outside, or to forgo their annual holiday in Greece to keep me company.  It’s always a very one-sided affair with my needs not being met in order to make my partner happy, and it’s taken a very long time to realize that my needs are just as important as anyone elses.

When we love someone, we have to love them for who they are not what we’d ideally like them to be.  After all, we’re far from perfect and expect them to love us faults, flaws and all.I really don’t know why I’m never enough for the men in my life.  I am a truly exceptional human being who has walked a path so difficult it’s a wonder I am still standing.  And not only am I still standing but I am living with joy, integrity and passion despite all the odds being stacked against me.  I deserve to be surrounded by people who celebrate that, and the beautiful person I’ve always been, and so do you.

 

Weekly roundup

Time has little meaning when you’re chronically ill and each day is the same.  Monday was a bank holiday but that didn’t even register on my radar because it was just like any other Monday, apart from extra traffic jams as tourists descended on the Lake District in their thousands for the half term holiday.  Pity the weather’s been rubbish for them!

Tuesday I had lunch with my bestie.  I was desperate to see her just to gain some perspective and have a bit of different gossip – other than her, the only people I spend any time with are over the age of 75!  We should all have someone with whom we can just be ourselves, has the same sense of humour and who gets us – my bestie is that for me 🙂

I am still being tortured for painting my shed doors the other week.  My neck is really sore and Wednesday morning I woke and was unable to move my right arm.  I’d obviously dislocated something in my upper spine in my sleep and was in a fair amount of pain, so I stuck my TENS machine on it and tried to just crack on.  Thursday morning I woke and it was totally fine!  That still amazes me – that you can be perfectly alright, go to bed and wake up unable to move some body part or other, and conversely go to bed in agony and wake up ticketyboo!  If you told that to any Doctor they simply wouldn’t believe you.

Thursday I made my tenth 180 mile round trip of the year to the RVI in Newcastle with my Dad.  The spinal surgeon had asked to see him and we both thought he would finally get his decompression surgery which had been postponed from last December, but no.  After waiting 45 minutes as the surgeon was running late we were told he won’t do Dad’s surgery until he’s seen the orthopeds about his hips.  Could he not have fucking told us that on the phone?!!  We were in and out in 10 minutes, then faced road works and diversions in the middle of rush hour in a city neither of us know – it’s was super stressful, esp when my sat nav decided it wasn’t going to work.  Why on earth, after seeing Doctor after Doctor since November 2017 have they just decided to scan his pelvis and realized he needs a hip replacement?  Should that not have been done 18 months ago?  We’re all starting to despair.

I have a tall fridge/freezer and the fridge has started to get icy and all my vegetables are freezing solid.  I rang the repair company I usually use, only to be told they don’t service Hotpoint as Hotpoint make their appliances so they can only be repaired by Hotpoint.  So I rang Hotpoint and the cheapest way I could get an engineer out was to take out a £120 insurance – what a fucking scam.  The guy turned up on 9th May and found ice the size of a berg had blocked the drain in the back of my freezer, so removed that and declared it fixed.  Only it wasn’t.  So three weeks later I had to request another visit and this time was told the sensor had gone and it wasn’t fixable.  Under the terms of my new insurance, if on the 2nd visit it is deemed irreparable I am given a replacement fridge/freezer, so that’s what the engineer requested.  Only I get a call from Hotpoint saying the two engineer visits have to be 30 days apart otherwise my insurance isn’t valid.  There is no mention of that in the Terms & Conditions of my insurance, however, not even in the small print!  So I’ve now made a formal complaint to Domestic & General (the insurers) for not honouring my insurance.  I know I absolutely am covered and they’re just trying it on, but the complaint can take up to two months to sort out and D&G are quite well aware that you can’t go two months without a fridge – they bank on you buying a new one yourself so they don’t have to!  This bloody country has gone to the dogs and no-one is stopping these rogues from ripping us all off.

I saw some rubber Pixie ears on Amazon recently and just knew they would come in handy for something!  I haven’t dressed up in a while and, I have to be honest, I’ve missed it so I decided to amend my recent Cockchafer picture to include a pixie passenger – the resulting image I’m calling The Hitchhiker 😀

 

Self Care

EDS Support UK have caused a bit of a ruckus on their Facebook page this week by stating “You may feel like you’ve made a breakthrough when you finally get a diagnosis, only to find that you are discharged and there is no-one to oversee your care as would be the case with other illnesses that affect multiple systems of the body. While there is no doubt that this lack of support is unfair, it is perfectly possible – indeed necessary – to learn to effectively manage your condition yourself.”

I must admit when I first read it I thought to myself “are you kidding me?!” and can see where the anger from patients is coming from, but on reflection I think I can see where EDS UK intended to come from, even if the phrases used weren’t particularly well thought through.

There are just 2 specialist NHS hEDS centres in the entire country (Sheffield and London) and if, like me, you live hundreds of miles from either they might as well not exist at all.  To make matters worse, if you have other conditions such as M.E. they won’t take you on as a patient, which I’ll explain further below.   So it actually is necessary to learn to manage your condition yourself.  But, and it’s a big BUT, when first diagnosed you really, really need some help and advice on how to do this and it is non existent.  Nine years after diagnosis I still don’t know the difference between a sprain, a tear and a partial dislocation – the pain feels the same to me – and I have had no guidance on how to distinguish between them or how to manage any one of them.   When I woke barely able to breathe or move due to what I guessed was rib slippage I had no-one to turn to for confirmation or advice on how to manage what was a scary and intensely painful symptom.  So while self-care is a vital part of any chronic health condition it must be based on adequate information and advice, and it’s that which is lacking from the point of view of most hEDS patients.

I think most patients took issue with the phrase “it is perfectly possible……to learn to effectively manage your condition yourself” which, actually, isn’t the case for some people.  hEDS is a spectrum disorder and while for those mildly or moderately affected self-care, with the guidance of trained professionals, may be adequate, it may not be suitable for those on the more severe end of the spectrum.

The next part of the EDS post which caused anger was this: “The day-to-day management of EDS is based around the right kind of exercise, physiotherapy and pacing”, which is all well and good if you can do exercise or tolerate physio.  Because of my M.E., however, I can’t so I am just left to get on with it on my tod.  Even if you can tolerate physio the number trained in hEDS is minuscule and, as EDS UK point out, any physio has to be the right kind because the regular kind can make us bendies worse!  I’m lucky where I live in that some of the physios at my local hospital have received special training in hEDS, however they discharged me because the exercises they were giving me made my pain and fatigue so much worse due to my M.E. (prescribing exercise to an M.E. patient is a bit like giving sugar to a diabetic), which is why the inpatient hEDS unit in London doesn’t accept patients with an M.E. diagnosis!  So I have been forced into self management because no-one wants a complex patient like me on their books or has any idea how to help me.

Many people with hEDS also have other conditions.  M.E. is common, as is Mast Cell Disease, but also other stuff like arthritis, auto-immune disorders and POTS/dysautonomia and although the EDS UK post mentions you will need help with these the help simply isn’t there.  So not only are you left to manage hEDS on your own you’re also left with all these other conditions for which there is no help or advice.  And I think it’s for this reason so many people were complaining about the EDS UK post.  Yes self care is an important part of managing hEDS but it shouldn’t be the only part, yet for the majority of patients it is.

Many support organizations are based in the South East, where they tend to live in a lovely little bubble.  I have a friend who lives in London and there are no less than 5 hospitals within a three mile radius of his house, whereas my local hospital is 30 miles away and the nearest specialist hospital for complex issues is 90 miles away.  Specialist care in Wales, N.Ireland and Scotland is even worse and I do get immensely pissed off at the attitude of charities who think everyone in the country has the same access to care as those living in the South East.  To make matters worse, when they hold conferences they are almost always in London, or if not London Birmingham, which if you live in Abergavenny, Whitehaven or Aberdeen might as well be on another planet.  As you know, I am seeing a MCAD specialist in Sheffield next month and am having to make a 6 hour return train journey for the privilege of having a half hour appointment!  Much more needs to be done to hold events, particularly teaching seminars, around the country so that our local doctors, physios and health care providers have the opportunity to receive information on our conditions and are then better informed to help us, and also so that we patients can attend and glean vital information on self care.  Being London-centric is my biggest complaint of all the charities.

So, while I agree that self care is a necessary part of managing hEDS it needs to be based on information, advice and guidance given by professionals trained in hEDS, and it’s this which is lacking.  It also can’t be the only type of care available, and again for the majority of patients there is no other help, not only for their hEDS symptoms but for all the other complex conditions which arise as part of, and alongside, their connective tissue disorder.  It’s a situation which needs more urgently addressing.