Tag: Ehlers Danlos Syndrome

Referrals, P.O.T.S & Books

On By Claire Saul (PainPalsBlog)In Books! Reviews & chat..., Disability, Ehlers Danlos Syndrome5 Comments

Another week has flown by and here we are in the UK at May bank holiday & half term.  Where is this year going?  I have had 2 medical appointments this week and each of these have led to even more.  The first was my monthly visit to the GP and I actually owned up to
the pain in my right hip that has got increasingly worse since it “popped” sideways – subluxed to those in the know – a couple of weeks ago.  Rather unfortunate as this is my “good” hip!!  The pain is completely different to the nerve pain and definitely EDS induced – it is deep in the front hip crease and at its worse on walking, to the point of literally taking my breathe away.  Or that could be because my hip gives way and I fall over!!
So a referral is in the post foimages (29)r an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more.  I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to?  There isn’t enough to cover them all!!  The second appointment was with the neurologist to check me out for seizures.  I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy.  But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!!  And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
Another couple of referrals and I will have stamps in my book for consultations with every body system.  Nearly a professional patient.  Something that did make me laugh is that the lovely doctor told me that I must lie down immediately when I feel the aura of a dizzy spell/faint gty_marijuana_plants_jt_120122_wblogcoming on – not sure how this will be received in the aisles of M&S.

We managed a trip to our book club this week – we meet in the pub, so Duncan isn’t going to miss this easily – and I have also been lucky to join The Book Club (TBC) on facebook.  For those of us who have “bad” days, reading can be a huge part of our lives from comfort to distraction to enjoyment.  539_10153914093796495_4475152326736141710_nThrough TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication.  I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community.  At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there.  Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out!  Guest reviews would be most welcome too.

We have a trip to Exeter later in the week for Olly to visit the university open day – Lucy and I plan a day shopping, but she is getting concerned in case I have a fall.  I did suggest borrowing a wheelchair – I know that I can’t walk very far and I have a feeling that Exeter is hilly – but I’m not sure that she fancies pushing her mum……to be continued!

 

 

 

 

Taste Buds, Drugs and Red, Red Wine

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, Medical, opiates, opioids, Pain relief8 Comments

miley-tongueA visit to the dentist got me thinking again about what our medication does to us.  I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers!  Quite a feat at my grand old age as my kids remind me.  Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!

My dentist actually knew what Ehlers Danlos syndrome is and what a spinal cord stimulator is and I  have to say, this impressed me.  He knew that EDS can cause mucus membranes (the mouth lining), to be drier than normal and that the various drugs we all take for chronic pain can also cause oral problems.  Of course he spoke to me about the importance of good mouth care, dental hygiene, flossing etc to keep my gums as healthy as possible, but it got me thinking about some other side effects of the drugs, particularly opiates.

images (26)In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine.  I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!!  The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found.  More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome.  I have no idea if it is still there, but it holds some great memories.

After the drowsiness, one of the first side effects I noticed when I started my cocktail of drugs was a change in my taste buds.  Particularly for red wine!  I know, I know, as a responsible now unregistered nurse, I must tell you all that it is never wise to mix strong drugs with alcohol.  All the packaging tells you so.images (27)  But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine.  What on earth was going on??  Did I ever remember to tell my patients that favourite food and drink might become unpalatable?  In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs.  A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.

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Red Red Wine

Then we come to the eyes, more mucus membranes beneath the lids.  I wear contact lenses and have done since I was 14, but in the last couple of years my eyes have become noticeably more dry and irritated after a shorter wearing time.  My optician wasn’t surprised after he asked which drugs I took – at the time oxycodone, lyrica/pregabalin, mirtazepine and fluoxetine.  These may seem like such small things, and really they are, but they just add to an already difficult situation.

There is light at the end of the tunnel.  Whilst I am still on various drugs and still suffer brain fog, I am finding that my taste is altering again.  My mouth remains dry and at times my gums are sore, but I can drink and more importantly ENJOY a glass of red wine again!! Cheers…

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Frustration

On By Claire Saul (PainPalsBlog)In Uncategorized4 Comments

Busy week last week for all sorts of reasons.  Trips to London, organising and attending a careers night, cinema, theatre, school meetings, catching up with old friends and a charity race night.  The Careers in Engineering was a great success – I did admit to not being an engineer, but to having some pretty good engineering inside of me!  Oh yes, and taking 3 generations of my engineering family with me – I managed to be the most embarrassing mum of all time for our student.  Dad came as a roving host and there was never a glass of red far from his side.  Dad, Duncan, Matthew and Daniel – couldn’t have done it without you.  Check out our pics:  Engineering photos kgs friends engineering.

images (13)I have been determined to live life as before and I so desperately want to be able to go out every day as when I was working, socialise, do what other people do.  But this week it felt like my wretched body let me down physically and mentally – Ehlers Danlos and chronic pain let me down.  I feel so frustrated: that I can’t have arrange a full week; that I felt panicked at the thought of a trip to the London theatre; that in the theatre I had to ask to swap seats as the draught from a fire exit door caused excruciating pain; that as the week progressed the exhaustion became more and more extreme; that by Thursday morning my physio was sticking needles into a shoulder muscle so tight from recurrent dislocations and stress; and that I constantly apologised and the tears flowed nightly.

The race night was a charity event in aid of research for Prada Willi syndrome Prada Willi syndrome.  It was organised by friends whose third baby was born with this metabolic condition for which there is no cure.  The hall was full and our local shops had been very supportive with donations of prizes and sponsoring horses – the support of so many friends and family was quite wonderful.  This little known condition and the research & support given by the charity definitely desrve a shout out.

69070b88927cda934d5414958bc8427bI hate to move the spotlight back to me, but couldn’t help to notice again at said race night, how people don’t know how to react to the chronically ill.  (No, I’m afraid that is not me – I don’t look that good at any time!) I don’t usually describe myself as “ill”…….I don’t think of myself as “ill”,  and I am acutely aware that “friends” don’t know how to react to my disability now.  We know that others socialise without us now, and who can blame them?  When a 46 year old woman has to have her mum help her in theimages (15) loo – although they were primary school toilets and very close to the ground – no wonder I needed help to sit down and then get up off the blinking thing again!
I equally know that other people can’t get their heads around the fact that I need so much help now – after all I don’t look sick, until I can’t stand up, have no balance  and my shoulder dislocates.

Yesterday my week finished or rather was finished off by a dog walk in the cold.  I know, I know – I shouldn’t have gone, but it was a beautiful day and I really wanted to get out.  Big mistake.  The cold permeated every part of me from my joints to my back to my foot.  How is it possible for internal titanium to feel cold?  I made it home just, then proceeded to images (14)scare hubbie and daughter by passing out and then stopping breathing – although as middle son would now point out in his very loud, deep voice I had to go and start again.  Charming!!

When I started this blog I wasn’t sure where it would take me – a good way to update friends and family after surgery; maybe to be able to offer a glimmer of help to others undergoing scs or experiencing chronic pain; what I hadn’t anticipated was how much I would enjoy writing again, how much I would enjoy & learn from other blogs and that I can vent my frustrations without being lynched by 3 teenagers!!!  Thanks if you are still with me.

 

 

 

Blue badge

On By Claire Saul (PainPalsBlog)In Disability, Ehlers Danlos Syndrome2 Comments

blue badgeYesterday I received an email reminding me that my blue badge is due to expire next month and I need to apply for renewal.  The process was fairly straightforward online, but having gone through so many strands of the benefits system since being “medically pensioned”, is it only me who finds the lack of liaison between departments so frustrating?  The number of times that I have given identical information to slightly different departments, and the amount of time and money that could be saved if there were joined up thinking and communication between them.  I had to upload another photo, which then had to be processed – yet there is already one on file that is on my current blue badge.  I really haven’t changed that much!  I automatically qualified due to my disability, oops no, my personal independence status, but I am pleased to see that the application process is tighter now than it was 3 years ago and that I was asked to send documentation regarding my mobility to the council.  When I applied last time I was surprised that I didn’t have to provide any form of proof, and have been frustrated at a lack of consistency across areas. Not to mention the rise in thefts of blue badges from vehicles and subsequent black market (http://www.disabledmotoring.org/news-and-features/news/post/127-blue-badge-theft-increases). I had better stop there!

This has got me thinking about how much chronic pain robs us of our independence and sense of self.  I still remember so clearly the first time that I put that badge in the car windscreen when mum and I went food shopping 3 years ago.  The last thing that I wanted was a bl..y blue badge for so many reasons, but on that day I felt an overwhelming sense of both shame and sham – I felt guilty that I was using a disabled spot when there were others so much worse off than me, but it was also like admitting defeat.  A loss of independence and actually facing up to needing help.  My dad and godfather always used to joke that they planned to retire to a chateau in France and “what was the point in having a nurse in the family if not to look after us?”.  A nurse with a dodgy back is probably worse than no nurse at all!

My blue badge has become a life saver in so many ways though, as my mobility has deteriorated over the last few years. images (1) The second fusion – the revision and extension – has actually made things harder physically and at times I feel like I’m going to snap in two at my waist.  I wrote on one of my pages about the Ehlers Danlos consultant’s comments regarding fusions, and I really understand where she is coming from now as the strain at the joint above the screws feels under more and more duress.  the stimulator can’t help with this pain.  So to be able to park the car in the centre of town and avoid a long, slow, painful walk back is priceless.  I walk with a stick or a crutch these days – too many falls leaving me too unstable without – but only 2 out of 11 of us used an aid from our pain group.  One of the men, in his 50s, said that he found it infuriating (using rather more colourful language!) that when he parked in a disabled spot he would regularly get disapproving looks, despite his blue badge.  In fact he has been on higher rate Disability Living allowance for several years, but he doesn’t look disabled – you can’t see his pain.

As a hospice nurse, I did become skilled in recognising the tell tale signs of an individual’s pain and our nearest and dearest will learn to recognise those signs in us; but Joe public is easily fooled by a cheery greeting, that very upright posture (from screws and rods, or indeed from the need to stand up to feel the scs!) or a slash of lipstick and blusher.  Sometimes we need to be fooled too.

Half Way with some late night ramblings

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

I wrote this at half one this morning and wasn’t sure if my ramblings should be published, but here goes……

The months between the residential course and the phone call with a date for the current stimulator trial have felt pregnant with emotions.  These have ranged from optimism to fear, caution to hope, an overwhelming, crippling realisation that this procedure will determine how I am able to live my life.  Then there are the hopes and expectations of others, all only wishing for the best for me, but some feeling impossibly high, maybe even untenable.  Failure does not feel like an option, but is a very real possible outcome and one that I have to face head on.  The pressure for a good outcome feels enormous and I am terrified of letting everyone down.

My physical condition has continued to deteriorate and I found recovery after the last surgery hard.  I had been determined after the first fusion that I would not have another operation, but then I felt pressurised into having a revision before anything else would be considered.  There comes a point where the patient with any chronic condition has a better comprehension of their own body than the medics around them.  I have always been very supple, or bendy as Dad would say, double jointed is another popular name used, but was only given a formal diagnosis a couple of years ago – probably because there was no formal diagnosis when I was a child.  Ehlers Danlos syndrome is a genetic condition which affects the connective tissues within the body, from loose joints & dislocations to detached retinas to more complex issues of the cardiac connective tissues.  So it was with some alarm that I listened to the specialist consultant at University College, London tell me that someone with my condition should not be having a fusion of any joints.  The rationale made perfect sense – a fusion of the vertebrae would serve only to destabilise the joints to either side as they became yet more mobile in an attempt to compensate for the site of the fusion.  The issue for me was that I had already been fused!

Then there was the occasion after the most recent extended fusion, when a physio declared that “we really needed to get some movement back into the bottom of my spine”, and that “this isn’t actually  nerve pain”. Excuse me?  Wasn’t the idea to prevent the spine from moving, hence the screws and concrete filler; as for a definition of nerve pain, I will take the consultant’s view of a damaged nerve root in combination with the feelings experienced in my body as the definitive.

I have suffered an increasing number of falls due to my leg caving in beneath me on top of an existing foot drop. Two stand out in recent weeks, the first of which occurred when my husband and the boys were away, leaving me home alone with my daughter. I had just gathered the washing in from the line on an August Saturday evening when, whoosh! Over I went straight down onto my coccyx on the concrete patio. The dog came pelting down the garden, I didn’t know that he could run that fast, and my daughter came running out.  She couldn’t get me up and ran along the road to fetch my friend and her 19 year old son, who duly arrived back uncertain what to expect.  At this moment the tears came and I felt I couldn’t go on –  my friend told me the next day that it was at this moment that the realization of the enormity of the situation hit her: just how much this was affecting me, both physically and emotionally.

The second big fall came the weekend prior to my hospital admission.  We had arrived at a hotel in Bournemouth for a weekend with family & friends and a dinner dance on the Saturday night.  The journey was a typical Friday evening – roadworks, heavy traffic etc etc, and despite our regular stops en route, by the time we drove into the car park I could no longer feel my leg or foot.  Diners in the hotel restaurant were treated to an almighty yell, to accompany their steaks and wine, as my leg failed me and, as if in slow motion, I toppled over and landed full length on my right side on the hard ground.  My brother was watching from the first floor and said that the scene had resembled something out of a Monty Python sketch, because my daughter ( 5 inches shorter than me)had been helping me but as I went over, she was too light to anchor me down – and instead her legs shot up into the air and she looked for all the world as if she had jumped me!! I couldn’t move for pain and  shock – talk about wanting the ground to swallow me.  Things were to go from bad to worse as  I discovered that I hadn’t picked up enough medication for the weekend and I began to feel slightly panicky.

So began my worst night – Duncan’s also!  Obviously I had really hurt myself from the fall, but just didn’t want a fuss.  But my leg pain was already going in overdrive during our meal and by the time that we went up to our room, I was feeling quite stressed.  When this pain takes grip there is nothing that will relieve it.  There have been nights like this in the past – I pace, I watch an amazing amount of rubbish TV on the ipad, I drink tea and at home I talk to the dog.  But this night was different and by 2.30am the only feeling that was completely engulfing me was an inability to carry on.  The pain and related irritation in my leg was at a level that I could no longer cope with, and once the tears started I could not control the sobs wracking through my body with almighty gasps. I’m not sure that anyone other than my fellow chronic pain sufferers will be able to have a grasp on the desperation I felt.  If my leg could have been removed I would have used a hacksaw myself; in those quiet hours of the early morning it is very easy to question oneself, and I can honestly say that I made a decision that night that I can’t live another 40 years like this.  Duncan made a more immediate decision and so it was at 2.45 am that the hotel porter was letting a deranged sobbing woman dressed in a nightie and leggings out into the pre-dawn morning.  The actual drive home was easy, but became busier as we approached the M 25 (what are all those people doing at 4 am??).  However we learnt the meaning of climbing the walls that night, as I experienced the worst car journey of my life  and was literally hanging onto the ceiling fabric from my nails.  I felt like I had gone completely mad.

Duncan did settle me eventually, and the funny side to the tale was that our eldest didn’t even realize we had arrived home until I walked into his room at 10 am that morning!  “I thought you went to Bournemouth!!”  This really fills us with confidence for future trips away……. We even managed to drive back for the dinner…..and Sunday was a beautiful day.FullSizeRender (2)

But take it from me that there is an unseen, unheard army of pain sufferers living out there.