One Liner Wednesday – My Bendy Body

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So……Life with Ehlers Danlos today meant opening the microwave and putting my neck out!!!

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#1linerWeds

From Linda’s One Liner Wednesday – visit her blog to see other participants’ one liners! https://lindaghill.com/2017/11/08/one-liner-wednesday-this-is-your-brain/

 

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Nobody said it would be easy – cake, life and curveballs

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Tonight is the 3rd birthday for The Book Club on Facebook – a fantastic group that I belong to full of authors, reviewers and readers.  Basically book people.  Yours truly has been making the birthday cake over the last few days and with a shoulder slipping in and out of socket it has been no easy task!

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Of course I have been too ambitious and I always start with an image of the finished cake, and then am disappointed in my results.  This has taken me longer not just due to my lack of a right arm – yes, I am right handed – but also down to the design and needing to let it harden in phases.  More of that later.  It has made me draw parallels with expectations of everyday life – don’t worry I’m not going to get too deep here.

But how often do we set out with expectations of how an area of life will turn out only to be disappointed.  So many people talk about their life plans from university to careers to marriage to children etc, etc.  But life has this habit of throwing in a few surprises and curve balls along the way doesn’t it? Isn’t this true for everyone?

Life with illness – be it chronic, acute, mental or physical – is something few of us can anticipate and much less embrace.  When I set off to nursing college as an eager 18 year old, I never dreamed that life would turn out like it has.  But then I guess it is a good thing because with each setback it is so important to be able to get back up, brush yourself off and continue.  If I had known when I had major back surgery at 21 that by 38 I would be heading for medical retirement, I might not have tried so hard to get myself back on my feet and back to work.  I loved those years nursing and I think that I was a pretty good nurse.  If I had known my genetic diagnosis – Ehlers Danlos Syndrome – and all that it covers aged in my teens, I might not taken up rowing and then gone on to nursing – probably the worst things I could have done but great experiences.

But then some of the curve balls can be pleasant surprises.  For me probably the biggest surprise was falling pregnant when I had been told I would never conceive naturally.  The tiredness, anaemia and nausea/sickness turned into a pregnancy when my GP carried out a PAP smear and informed my cervix was blue – a classic sign of a 13 week pregnancy apparently!  I was taking HRT and had gone for a check up ahead of a new job – but came out as a mummy.  A huge curve ball, not in the game plan but fantastic (although I wasn’t saying that half an hour ago when said babe, 21 years on, created havoc in the kitchen with a pot of pasta on the stove!).

Being Mum

The surprise. aged 4 weeks….now a cover board on Pinterest!

I suppose what I am getting at is the importance to strive hard but also to accept that not everything will go exactly to plan…..and this is ok.  For me I’ve been thinking about the periods of needing to let my cake set before I can continue with it – living with chronic illness has these periods when fatigue hits and symptoms flare equalling a need to rest and pace.  Wait for the cake to set!  Don’t rush it, don’t take short cuts because there will be some sort of pay back.  In my experience this is life – illness or not.

So back to the cake….it is for a book club, so clever clogs here decided to make a stack of books.  The individual books were made – one chocolate, one Victoria sponge and one lemon – and then the icing covers started.  This is where the patience and waiting was required and I’m not good at this part!  Then last night came the final assembly of the three tier cake to form a stack of books……it wasn’t completely straight forward, there have been a couple of corners broken, some scaffolding was required and this morning some patch were required to plaster a few stress fractures.  The result is a stack of books that are not altogether straight and definitely look like they have been well loved if a little dog eared.  Not so different to life, I’d say – starting with high expectations (nothing wrong with that and I am not saying they should be lowered), hitting a few bumps along the way, the odd curve ball and maybe the finished product not quite as expected, but nevertheless created and to be made the best of.  Not always easy to do or accept, but as the infamous anonymous quote says “Nobody said it would be easy, they just promised it would be worth it..”

Will let you know if this holds for the cake when it is tasted, as for comparisons with life….what do you think?

Nobody said....

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What are Dysautonomia and POTS?

Hannah on Sunshine and Spoons blog has written this post about Dysautonomia and POTS (postural orthostatic tachycardia syndrome).

She recently did a straw poll on a facebook group that we belong to and very few people had any idea what this medical term means.  I knew because I have it…..but had never come across the term in my own medical career.  Some of you will have read how my symptoms have been particularly bad recently, but I am now able to stand upright again!!

Please read the whole piece and share in order to help us spread awareness!

What are Dysautonomia and POTS?

What are Dysautonomia and POTS-

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a little….do you know what dysautonomia is?

If you said no, you’re not alone.  Most people have never even heard of it.  I didn’t know what it was either until I was diagnosed with it.  I have Postural Orthostatic Tachycardia Syndrome or POTS which is one of the autonomic disorders that falls under the umbrella term of dysautonomia.  Other types include Neurocardiogenic Syncope or NCS and Multiple System Atrophy or MSA.

Despite the fact that many people have never heard of dysautonomia, it’s not rare.  It’s estimated that over 70 million people around the world have it in one form or another.  Often, it’s a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more   The most severe cases can result in death.

What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc.  People with an autonomic disorder such as POTS have issues regulating those things.

 

To read the whole post visit Sunshine and Spoons 

You will also find great links to Hannah’s Sunshine and Spoons Shop

POTSWarrior5

 

Dear Hubby….

Dear Hubby,

I woke up this morning wondering how we got here.  If we had known on this day all those years ago what was in store, I wonder if you..or I…would have turned up at Chelsea Registrar’s office?Scan0023

But we did, and here we are, having weathered the storms, the unexpected, the joys and some dark times.  Back then it was just going to be us and your beloved Lotus 7, having been told that babies were not likely when I was diagnosed with polycystic ovary syndrome aged 20.  The first storm – for you at least – was the realisation, soon after we bought our flat in Fulham, that we couldn’t afford the parking space to go with it! So the first Lotus 7 had to be sold as leaving it on the road – even the posh road to Bishop’s Park and the Palace that we overlooked – was not going to happen.  Scan0025

Of course at this time we had no idea about Ehlers Danlos Syndrome – had never heard of it – we just knew I had a host of problems and had already undergone major back surgery and was very bendy. Life in London was great, wasn’t it?  I don’t think that brand new kitchen was cooked in very often as we dined out down the Kings Road or in Fulham most nights.  But all good things come to an end, and you began craving another sports car(!) so the hunt was on to move out of London.  Soon after the move to our first house came another joy in the shape of a second Lotus 7. But within months came probably our biggest unexpected piece of news….I went to the GP for a once over before starting a new job, feeling generally unwell – and came out 3 months pregnant whilst taking HRT.  Hmmm….that little 2 seater didn’t last long either.

There has been redundancy; more babies – including the tummy bug that didn’t go….oops! your little girl…..3 caesarians & increasing back pain; another house move to the same road as your in laws(!); hideous working hours for us both, including 6 day weeks and night shifts; increasing migraines; more dislocations; IBS; school choices; more back pain and finally on the eve of Obama’s first term in office – the straw that broke this nurse’s back!  Then a career lost – permanently.

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And 2 becomes..5

We are quite a few years on and many more major surgeries to add to the list.  Not forgetting the Ehlers Danlos Syndrome diagnosis – for me and the kids.  A life threatening illness for one of our parents and then your own health taking the full brunt of all our traumas. That was a scary time for us all to watch you disintegrate.

But…..we are here still standing – you at least! Me – I spend more time on the ground these days (laugh everyone!).  The kids had to grow up fast and have all turned out to be pretty bright (not sure where that came from), independent & resourceful – so long as we’re not talking about tidiness and cleaning!!  We have had to accept that I need you to officially be my “carer” – which I still hate – as my health declines, and this has been hard for us both having worked and earned from the age of 18.

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Look what arrived today!

But…..with a bit of juggling, fantastic parents and wonderful friends we are doing ok, aren’t we?  No we haven’t any money for holidays, and we worry about being unable to help the kids out financially, but this has led to our young adults working and earning – be it paper rounds, babysitting or writing websites! We are spending more time together as a family, you are enjoying setting up your own small venture and taking on a role at the kids’ old primary school, which has been the making of you. Who would have thought it a couple of years ago!  You never – or rarely – complain about me and I do know that on those really bad days, when the pain flares and I can’t settle, or the black dog (not Sam!) surfaces I can be awful to live with.  Plus there are the endless trips to hospitals across London and the different specialists to keep track of.

Neither of us signed up for this, but then you never know what is round the corner. In a funny sort of way maybe life is actually more fulfilling now.  We certainly both have almost encyclopaedic knowledge of Ehlers Danlos Syndrome and all that goes with it!

So back to the beginning…..it was a pretty dreary day and actually raining when we walked out as Mr & Mrs (at least I did prevent you walking me over the road to Stamford Park!) 25 years ago.  But today has been a bright, beautiful autumn day – Happy Silver Wedding Anniversary, hubby!Scan0024

love Claire x

Dear Hubby

Brilliant blog posts on HonestMum.com

Medical professional to Professional Patient

In under ten short years I have found myself well and truly stepping out of one uniform and into another.  I didn’t see it coming, I really didn’t.  But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!

Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! File_000 (45) These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!

 

 

A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently.  As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic.  In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface.  Of course all that time I was nurturing my own genetic illness slowly but surely.  It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture.  But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.

My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP!  With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising.  No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in!  My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me!  Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!

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The Student Engineer – photo taken by Dan McKenzie

Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age.  I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips.  We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well.  Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations.  The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.

There you have it – in the space of a few years going from medical professional to professional patient!  As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life.  Funny, but the endocrinologist said something similar to me about living life the best I can.

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My lovely girl on her way out to live…..

 

Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!!  But it may well have made no difference.

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What a difference a decade makes! All dressed up – my last night out before the latest rounds of surgery and hospital visits! The whole family – with my parents and brother.

The Masseuse who pulled my Arm Out

Many of us bendies will relate to this! In fact the same thing happened to me – just replace the word masseuse with anaesthetist and the salon with operating theatre.  You get the idea!


Life with a disability can sometimes give rise to unspoken questions and sensitivities, but amid the awkwardness there can be humour. The following is an edited version of a sketch by Angela Clarke who has Ehlers-Danlos syndrome, delivered for the BBC at the Edinburgh Fringe Festival.

Illustration of Angela Clarke's arm dislocating due to Ehlers-Danlos syndrome

Image by Sarah Dousse, BBC.COM

I was away at a fancy spa and thought I’d indulge in a nice relaxing massage as a treat.

The softly spoken therapist, who was called something ethereal and calming like Summer or Melody or Zinfandel Blush, told me she would be using an aromatherapy oil of lavender picked by organically trained squirrels and mermaid tears.

The room was painted in calming shades of rice pudding, scented candles flickered around me and music, which sounded like whales fornicating, played in the background.

I was so preoccupied with getting onto the high massage table that I forgot to mention a vital piece of information – I have an invisible disability. Big mistake.

I have Ehlers-Danlos syndrome (EDS), a debilitating condition which affects connective tissue like skin and tendons and, among other things, means I injure easily.

It’s genetic. I got it from my mum. Worst birthday present ever. While some people with EDS have no complications, other than being super-flexible, I get chronic pain, frequent dislocations, and mobility issues. Mum, on the other hand, got straight into advanced yoga…….

………

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Image by Sarah Dousse, BBC.COM

So there I am, blissed out on the massage table. Zinfandel Blush has marinated me like a chicken breast. The whales are climaxing in the background, and I’m drifting off to sleep.

She runs her oil-covered hands down my arm and gives it a gentle tug to stretch out my stiff shoulder, but it just keeps coming, until pop! It comes clean out of the socket. Dislocated.

Believe me, it gets funnier! For the complete, hilarious post go here – BBC Ouch!

Ehlers Danlos in the news!

I just want to share a couple of stories with you that both centre on young ladies living with types of EDS.  Of course these pieces always jump out at me, but I believe that whether you have EDS, another chronic illness or are reading this as, hopefully, a fit and well body that these stories will raise a smile!

The first features a beautiful 11 year old and her canine best friend,

Assistance Dog Helps 11-Year-Old Who Can’t Stand on Her Own Accomplish Her Dreams

POSTED ON AUGUST 9, 2017 AT 2:04PM EDT

At just seven years old, LanDan Olivia was diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome.  The effects of these syndromes make it hard for LanDan Olivia to stand on her own and often restrict her to a wheelchair. 

But LanDan Olivia doesn’t feel restricted, and that is in big part due to her assistance dog and best friend Perkins, who keeps the 11-year-old smiling and active every day.

 The road to Perkins started shortly after LanDan’s diagnosis. She and her mom reached out to Canine Companions for Independence for an assistance dog to help LanDan Olivia conquer the everyday tasks that had now become a struggle for her.

“I was in my wheelchair, and it was really hard to get around, and open doors and drawers, and close them, and I would drop things and couldn’t pick them up. Sometimes even emotionally, I also felt like I needed help with things that a person could not understand,” she told PEOPLE. “Perkins just feels me. I needed someone like Perkins in my life.”

After two years of waiting, LanDan Olivia received the call she’d been dreaming of from Canine Companions for Independence, an invitation to Team Training. There, Perkins was waiting to meet his future owner and best buddy, having already gone through a year and a half of basic training, so they could begin working on a relationship that catered to LanDan Olivia’s specific needs.

To read the full story visit Working Dogs

My second story features Vascular Ehlers Danlos Syndrome, which is probably carries the highest risk of fatality.  Planning to start a family when you carry a genetic condition is a minefield ordinarily, but if the pregnancy itself could put the mother’s life at risk due to said condition another can of worms waits to be opened.  This is how one couple coped.

Leyla was desperate to be a mother, but being pregnant could kill her… Which is why she used a surrogate even though she’s able to conceive

  • For Leyla Hutchings it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby
  • Baby Zeki was born to his surrogate mother Rachael Coleman in 
  • 400 surrogate babies were registered in UK in 2016 – four times 2011 statistics

When Leyla Hutchings takes her three-year-old son Zeki to see his ‘Auntie’ Rachael, he’s always excited to play with her three children, whom he treats as his cousins.

Yet their relationship is much more complex than that.

They’re not genetically related, but Zeki has a lot in common with Daisy, nine, Jack, seven, and Max, five. For ‘Auntie’ Rachael is not a biological relation — she simply gave birth to him.

Zeki is a surrogate child, the result of a sympathetic mother’s urge to help another woman have a child.

For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby

For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby

Last year, 400 surrogate babies were registered in the UK — nearly four times as many as in 2011 — due mainly to increased awareness that surrogacy is a possibility for childless couples.

According to the charity Surrogacy UK, common reasons for using a surrogate include repeated miscarriages, failed IVF treatments or early menopause, often as a result of cancer treatment. And one in 5,000 women has no womb or cervix.

But Leyla’s case was different — it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby.

At the age of 26, she was diagnosed with an aneurysm — a bulge in a major blood vessel, in her case in the leg, which, if it burst, could cause fatal internal bleeding.

Leyla was on the Tube on her way to work at a London law firm when she collapsed with sudden pain. Rushed to hospital, she was diagnosed with vascular Ehlers-Danlos syndrome (EDS) — a rare genetic condition.

Read more: http://www.dailymail.co.uk/news/article-4790834/Mother-uses-surrogate-s-able-conceive.html#ixzz4qE3uAGYA
Follow us: @MailOnline on Twitter | DailyMail on Facebook

I hope that these stories have brought a smile to your face.

Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

Monday Magic – Inspiring Blogs for You!

Another week, another Monday – so that means one thing here at PainPals!  Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!

Monday Magic

There have been two major events in our house over the last week.  The first was a long awaited appointment with a geneticist for the beautiful girl(BG).  I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation.  Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis.  My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18.  So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18!  Then the children’s department decided that they really weren’t the right people to see the BG.  Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.

Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating.  Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history.  The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself.  No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems.  Ringing bells in my ears!!!  More of this in another post…..

The second major event was our old dog Sam having a massive haircut with our fantastic groomer.  Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back,  hips and rear legs.  He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy!  He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.

Sammy

Spoonie Sammy

Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before.  Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health!  Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great!  If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.

Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends!  The first post is a shout out award for all us spoonie bloggers!

http://www.balancedespitethechaos.com/blog/an-award

https://jamisonwrites.com/2017/07/12/this-is-why-i-hate-summer/

https://sewprettyinpink.wordpress.com/

http://www.thisautoimmunelife.com/2017/07/23/national-cheesecake-day/

https://whenwomeninspire.com/2017/07/22/mental-health-tips-for-women/

https://bethanykays.com/2017/07/24/poetry-45/

https://beingcharis.com/2017/07/20/qa-with-charis-about-her-journey-with-ankylosing-spondylitis/

https://sleepysantosha.com/how-to-start-yoga/   plus Youtube channel: https://www.youtube.com/channel/UC0ROkm_8Bjk0qOQ13XYOebg/feed

https://carlyscrazychroniclife.wordpress.com/2017/07/11/alternative-therapies-or-not/

http://voiceathlete.co.uk/dystonia/

http://momssmallvictories.com/self-care-for-moms-with-chronic-pain/

https://www.my-ra-perspective.com/single-post/2017/04/24/Working-and-Disability-Advice-on-working-while-disabled-and-knowing-your-limits

https://edsjour.blogspot.co.uk/2017/07/10-tips-for-coping-while-in-waiting-room.html

http://www.bloomingmindfulness.co.uk/?p=440

http://www.mesheacrysup.com/blog-living-a-fibrolife/re-visitedfibrosecretc-part-5-i-was-afraid-to-have-a-good-day

Funfetti-Cheesecake

Picture from “this autoimmune life” blog

Please make someone’s day with a follow, like and comment!

Claire x

I have shared this post with Honest Mum blog


Brilliant blog posts on HonestMum.com

Normal or Difficult Problem? All depends which specialist I see……..the joy of chronic illness!

I had a Personal Independence Payment medical review this week (more of that another time!). My GP had requested a home visit, mainly as my dysautonomia/fainting is so much worse, but I was merely given another appointment a little nearer to home.  As it seemed near impossible to tie up the DWP who would have received the letter, with the review service (formerly known as ATOS) we decided between us that Duncan would try to get me there, but the GP was adamant not without all the letters that she had been sent recently.  Half a tree later we left her surgery – and this was just the correspondence since the beginning of the year.

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PAIN PALS BLOG

The day after the assessment, I received a copy of the letter dictated by my new rheumatologist to my GP.  Lovely man, but the person who he describes in this letter doesn’t appear to be me.  In fact she is completely at odds to the lady described a month earlier by the orthopaedic consultant, after a dislocation that required a trip to A&E!  The history of my shoulder pain was wrong, and apparently I have “a reasonable range of movement” …”with some discomfort” – ahem, I am hypermobile with very stretched ligaments & tendons so everything moves in every direction and I was actually referred for PAIN management.  Apparently my “other joints are normal” and I “really know how to manage my hypermobility syndrome”.

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The ortho consultant said “she has been having pain in that shoulder for some time and was seen by my colleague 2 years ago…” and “on examining her shoulder it moves through a reduced range and her x rays show progressive glenohumeral joint arthritis, with a marked difference from 2 years ago”.  He goes on to say “Unfortunately Claire has a very difficult problem to solve. She has EDS….& has developed arthropathy within the glenohumeral joint”.  I was told 2 years ago that if I were 30 years older I would be whisked in for a shoulder replacement……this time the consultant could see a huge deterioration on x ray, but again explained that a shoulder replacement with my EDS is just not really an option as my ligaments & cartilages are so stretched.  A shoulder replacement would not stand up to recurrent dislocations!

So, the thing that the two specialists agree is that I have a really good knowledge of EDS and both do recommend conservative treatment with physiotherapy – again!  The physio with expertise in hypermobility syndromes who the rheumatologist recommends is out of area; my old physio who works with the ortho consultant is no longer able to see me on the NHS as he is a Consultant physio……..

This is the reality of a condition that affects multiple body systems with no one person leading the care!  So now the search for a physio, who understands that I can’t be “fixed” but need ongoing rehab,  is ON!!!

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