Tag: chronic pain

Engineering, kilts & haggis!

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

I really don’t know where January went.  Between parents’ evenings, option evenings, governor duties and arranging a careers evening, the different schools have taken over my waking hours.  The careers evening is an engineering event for 16 – 18 year olds, arranged with the alumni committee from my old school.  I’ve exploited all the contacts I could, including the livery company in the City of London for whom our engineering student is an apprentice – we are hosting it in their amazing venue at London Bridge.  Thank you WC of Scientific Instrument Makers.

The family have all been roped in – father, brother, husband and son – whether they want to or not!!  But the biggest joke is that so many people assume that I am an engineer……….I just have to say that no, I’m not, but I do have my very own amazing bit of engineering going on in my spine…..titanium, screws, electrodes, battery!

Thanks to the people who have been in touch checking where I’ve been.  I’m ok – not great – but ok.  I had a check up at St T’s and the nurse was happy enough with me.  She was pleased with my usage and time switched off; apparently I increase usage over the weekend and then to hit a peak on a Monday….funny that, what with a house full of teenagers, washing, cooking, dog, MESS!!  I actually needed to change the batteries in the controller last week – for anyone with a new stim, the batteries lasted me about 3 months and these can be run to empty.  Not to be confused with my implant which mc83521247ebb8e5f7485babf99e9d143ust NOT be run flat…..unless I fancy a quick date with my friendly Guys’ anaesthetist!  The thing I found tricky was quantifying exactly how much the stim has reduced the pain as it varies so much.  I know what I should be saying and what the hospital want me to say, and I can say that I definitely have some control back…….even if that is by lying flat on the ground.
Those of you with a tingly scs will know that this increases the parasthesia enormously as the spinal cord lies on top of the electrodes
– those of you who don’t, try to imagine sticking your fingers in a socket and the resulting hairstyle!!

This recent bout of cold weather isn’t great for those of us with chronic pain.  One friend said he has actually been really grateful for global warming keeping this winter so mild!   Imagine that feeling when ice cream hurts your teeth……then put it into your back, down a limb and out of a hand/foot multiplied by 100 and you will start to get the picture.  Duncan and I went for a walk yesterday afternoon, having been told by middle child that it was quite mild outside.  I don’t know what he was talking about, because it was freezing and there was an almighty battle going on down my leg between the wind, the pain and the stimulation.  With chronic pain, it is as if your body’s wiring has malfunctioned and parts start misfiring and become hypersensitive – for me it includes my gut.  My biology drummed the word peristalsis into us at school, and on Sunday in the park all I could think of was Mr Parfit’s peristalsis as I heaved all the way home!!

There is something new that I managed to do with my stim helping since my last post……..attend a Burn’s night celebration at our daughter’s school.  We were given the tickets at short notice by a friend and had no idea what to expect.  Duncan chickened out and turned down the offer of a kilt, instead opting for a tartan dicky bow……..was he worried about getting the knees out, or what a man really hides under his kilt????

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I was at the wrong Burn’s night if this is a man in a kilt!

The haggis was great, as was the piper and the Scottish DT teacher, resplendent in full kilt, who spoke Robbie Burn’s infamous words as he broke the haggis open. download (3) Something I hadn’t mentioned to Duncan was the Scottish dancing after the meal – his worst nightmare.  Funnily enough the stim really doesn’t give super country dancing powers – and Duncan said that for once he was delighted I have a bad back!  He only narrowly escaped being pulled up to join a reel……..

 

 

Empathy isn’t just for Xmas

On By Claire Saul (PainPalsBlog)In Christmas, chronic illness, Depression & mental health, family, friendship, Happiness, Kindness, mental health, Uncategorized7 Comments

We have been so unwell since my last post!  Duncan and I haven’t stopped coughing yet, I lost my voice completely last week – much to the delight of the kids – and have forbidden the student from coming home as I’m sleeping in his bed.  I have missed out on the various nativity productions at my primary school and have cancelled so many socials with friends I have lost count.images (7)  Panic started to kick in at the end of last week when the cupboards were bare and the fridge was empty, so we hauled ourselves coughing and wheezing to the supermarket.  As friends commented that they were busy getting everything done for Christmas, I was thinking that I hadn’t even thought about it let alone started!  Going from post operative recovery straight into flu/cough for nearly 3 weeks has not been a great seasonal prep time.

I have to admit that I have struggled with my back – coughing is rough at the best of times, isn’t it, putting stress on the abs, causing headaches and stress incontinence for us girls.  So the added stress on a not quite healed operation site has been tough.  My implant site (right butt!) and right leg has been so sore that some mornings I’ve woken up feeling like I’ve been beaten up and even resorted to my post op naproxen again.  The stimulation has actually made my nerve pain worse whilst I’ve been ill – I wonder why?  After nearly 3 weeks I am so fed up!  But on the up side, I have managed to get into the hairdresser’s seat this week and it is official – I am no longer grey.  Thanks to my lovely friend Bev, I now look and nearly feel 10 years younger!  Duncan and I got out to a carol service for the other school where I sit on the alumni association – I sang the carols beautifully.  Really easy to do when, as you open your mouth, no sound comes out!  It was here that I was given a piece of advice from an old school friend who has lots of remedies from his Indian grandmother.  We do lemon and honey hot drinks (unless like my brother and I, you can’t stand the smell of honey – long story going back to our childhood, our great grandmother and pots of coffee “thickened” with honey!!) whereas he recommended turmeric in hot water…..mmmm, delicious!  But I have been that desperate that I would give anything a go and, sweetened with a spot of brown sugar, it has proven oddly soothing.  Duncan has been well enough to drive to his parents today, we have shipped the teenage daughter off to stay with my brother and sister in law (thanks, Sandra!), and the boys are still at school/uni……so I am enjoying a glorious couple of days in an empty house.  Just me and my dog and rubbish Christmas movies……

For this is the season for goodwill, over indulgence, sentimental tv and bonhomie, isn’t it?  How many of us struggle to maintain the cheerful face as everyone around us appears to be having such a fantastic time?  Whether it is loneliness, grief, poverty or illness, there are a myriad of reasons out there that actually make this time of year very difficult for some of us.  Guilt is another emotion that gets in the way.  Guilt that you aren’t feeling jolly; guilt that your condition is keeping your loved ones from the activities that you feel they should be a part of; guilt that others feel that they must tiptoe around you; guilt that you can’t do for your friends and family what you would want to; guilt for feeling jealous of them.

It really is so true that when the chips are down, we find out who our friends are.  Over the twenty or so years since I have had my back problems, I have been surprised more than once by both the friends who have stepped up with support and those who have not!  This old adage is even more true with a chronic condition.  I am well aware that for some people my disability makes me a bloody nuisance these days, but it can still be hurtful.  I don’t want to have to constantly ask for a lift for instance, but when “friends” just no longer even think to ask or offer it is tough.  I was listening to the fantastic Adele’s song “Million Years Ago” and she seemed to be singing my song when she describes “not being able to stand the reflection I see; my life flashing by; missing my friends, when my life was a party to be thrown; but that was a million years ago”. images (8) I can see my friends’ lives moving on, careers unfurling, travels taking them far and wide, and I do feel that mine has come to a stand still.  Self pity?  I hope not.  More being realistic and understanding my limitations.  Note to self – New Year, new pain relief with the scs, new stage in my life!

I received a text today from a very supportive friend apologising for being a “rubbish” friend for not being in touch recently.  Yet her teenage daughter, who has an Asperger’s diagnosis, had tried to commit suicide.  Have you noticed that it is often the people who are in the most difficult situations themselves, who are also the very people who do make the time for their friends in need? I guess this goes back to the “when the chips are down” again – when we have been there maybe we develop a heightened empathy.  A friend who has been particularly supportive of me and of Duncan since his  mental health breakdown last year, has undergone her own battle with breast cancer, including extensive reconstructive surgery earlier this year.  Kylie Minogue took the time to surprise a young woman in her home, with a party live on a BBC show last night to “thank” her for the work that she has done for a breast cancer organisation.  What marks her out is that she was undergoing her own treatment for breast cancer, diagnosed in her late twenties, looking at the possibility of infertility, and yet pushed herself to run marathons, fund raise and praise the bravery of other women around her.  Of course Kylie had her own personal experience to drive her to want to do something for this young lady.

download (1)Christmas!  Looking on the bright side, Star Wars is back in our cinemas, the X Factor has finished and Jose Mourinho has been sacked……sorry, Duncan!

 

You shoot me down, I won’t fall, I am titanium

On By Claire Saul (PainPalsBlog)In chronic painLeave a comment

images (3)At the moment my downfall seems to be my titanium.  Along with storms Abigail and Barney – who names these storms??  Isn’t Barney a big, purple dinosaur?  Every time that we have a storm, particularly wi
th high winds, a couple of things happen in our house.  The  first is that our crazy mutt stalks the house panting and it is the only time that he won’t  stay in the kitchen at night.  Thunder and lightening or fireworks – he’ll just go into the garden and have a really good bark and then settle down; but when the weather is windy he becomes so upset and agitated, that I have wondered if he experiences some sort of pain.  Do the changes in air pressure cause him a problem with his inner ears in the same way that an aircraft can for us?

The other thing that happens when the weather changes is that the pain in my lower back increases.  It is more than just a drop in the temperature increasing nerve pain.  I feel a growing pressure and coldness in the spine along the whole length of the fusion and nothing will ease it.  Officially I don’t believe that there is any research or medical evidence to explain or corroborate this, but just reading other experiences online makes me think that it can’t be coincidence that so many with metal implants experience these sensations.  I do have one friend who had a titanium plate put into her thigh at The National Orthopaedic Hospital at Stanmore and she was told by her surgeon that changes in air pressure can cause changes in the titanium.  Please don’t get me wrong, titanium has led  to some fantastic breakthroughs in surgery as it is a substance that causes very little reaction when implanted in the human body.  My own experience as a nurse was mainly in the use of osseo integrated implants for facial reconstruction – that is titanium studs anchored into the bones onto which false ears or noses, for example, were attached.  These were a true game changer in the treatment and enhancement of life quality for those undergoing major surgery for head & neck cancers.  The beauty of the titanium is that the bone actually grows into the metal – hence “osseo integrated” – and gives a solid base for prostheses.

When I had my first fusion I was told that the aim was for the pedicle screws to integrate with the spine, the rods to hold it all in place and eventually the bones would fuse with the help of a bone graft.  Unfortunately the bone graft did not take and the metalwork was not in the correct position- hence the need for a revision.  For me I believe that the fusion has increased my mobility problems, aggravated my hypermobile spine and left me more disabled – yes, I do regret having the second op and would urge anyone to think very carefully before undergoing surgery.  But sometimes it really isn’t that easy being in the patient’s seat – particularly when you feel desperate & it can seem like there aren’t many routes open to you.  I felt that my surgeon was only going to refer me for scs assessment after all surgical routes had been explored – so leaving me with no option but to undergo another fusion as a means to an end.  Whilst there should be an honest and open dialogue between patient and medic, it is still a case of our lives in their hands.

Back to David Guetta’s lyrics – but this time I can use them to describe me and my pain.  I am titanium as I battle constant pain:

Pain, “You shout it out,
But I can’t hear a word you say
I’m talking loud, not saying much
I’m criticized but all your bullets ricochet
You shoot me down, but I get up
I’m bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium

images (4)
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
I am titanium”

24 years, 7 ops – but I won’t fall!

 

Panorama

On By Claire Saul (PainPalsBlog)In opiates1 Comment

imageHands up who saw Panorama on Monday night!  I watched it with my father in law by pure chance as I hadn’t noticed what the subject matter was to be.  For those of us living with chronic pain prescription pain killers are a huge part of our daily lives – and not just the opiates dealt with on the TV.  Believe me, some of the non opiates have some equally nasty side effectives and are just as difficult to withdraw from.

I remember well when the new man made drug oxycodone was first licensed for use in palliative care.  It was sold to us as the new wonder drug with fewer side effects and a reduced effect upon liver and kidney function.  However the nickname of Hillbilly heroin was starting to reach us and the alarm bells should have been ringing.  Very quickly the drug was being used for that notoriously difficult diagnosis – you guessed it, chronic pain – and it started to make its way onto the black market to join its cousin, heroin.  These days no American cop show worth it’s salts has a season go by imagewithout several references to “oxy”!

What about Joe Bloggs who visits his GP with sciatica? How will he be treated to help ease his symptoms? Diazepam – Valium- is always a good mainstay for short term use to reduce and relax muscle spasm, but what about pain killers?  The vast array ranges from low level opiates: cocodamol, codydramol, dihydrocodeine and the highly addictive tramadol; non steroidals such as ibuprofen, naproxen and diclofenac sodium; and the drugs found to help nerve pain such as the antidepressant amitryptilline and anticonvulsants such as carbamazepine, gabapentin and the gold standard pregabalin (Lyrica).  This must be prescribed by it’s trade name since various patents and licences have lapsed.  I have never known a drug to contain a list of possible side effects as long as that distributed with pregabalin – the manufacturer lists every body system to cover themselves! So Joe will leave his GP surgery clutching a script with probably suboptimal analgesia – that is not inadequate amounts, but rather not the best combination for Joe.image

So several years later Joe is finding that his long acting opiate (MST or OxyContin) is on the increase, the dreaded pregabalin is causing weight gain amongst other effects and he is taking higher doses of his short acting opiate (sevredol or oxynorm) for breakthrough pain. He is walking through the day in a fog after a sleepless night, with a brain and memory filled with opiate shaped holes, weighing 4stone more and now diagnosed to have chronic pain.  Oh, did I mention that he is also a fully paid up member of club Prozac by now?  Many of us living with chronic pain face depression and the need for “happy” pills.  More of that another time.  Alongside this Joe is attempting to show the DWP that he really can’t jump through the hoops that they would like him to, as he is no longer able to work.  Perhaps you recognise this weary, tired, depressed, overweight person who remains in pain?  To be continued…..image

How am I doing in Hereford?  I am being extremely well looked after – spoilt in fact – and I do feel guilty for not helping out.  We have had the same dismal weather making a damp squid of bonfire week as the rest of the country.  There have been a few bright lights and loud bangs for the dogs to bark at though!  I have managed to walk to the supermarket and met lots of neighbours on the way, including the retired gynaecologist (a Tommy’s man who objected to the pairing with Guy’s!) who made me laugh when he asked in a stage whisper how my bladder is!!  I continue to play with the voltage of the Scs as I need a higher stimulation in the cold, damp weather which is also aggravating the EDS – my shoulder slid out last night.  Does anyone else get paranoid that they will run out of voltage for enough relief?  How positional are other people’s Stims? I have found that if my pain is excruciating down to my foot, that lying flat on the floor increases the level of stimulation – I must speak to the CNS next week to see if I need reprogramming!image

Apologies for the odd posts today – problems with the iPad meaning I have lost the second half of the post twice!!

One day at a time

On By Claire Saul (PainPalsBlog)In chronic pain, Spinal cord stimulator, Uncategorized4 Comments

The big day has finally arrived!  I mentioned weeks ago that a birthday present for 2 teenage girls was a shopping trip to the Westfield, Shepherds Bush and tomorrow is D day.  They are excited….not so sure about Duncan.  The words cold feet spring to mind.  I will make a decision whether I can manage to go with them in the morning – at least there is plenty of disabled car parking and lots of coffee shops.  I think that there may even be shopmobility and the option to borrow a wheelchair if it all becomes too much – and that is just for Duncan!  So the girls have their vouchers and their birthday money, and instructions about what is considered a suitable purchase that mother will allow them to wear.  Oh, to be a teenage girl again…or not.

Meanwhile another one of my group is currently undergoing a scs trial, whilst another has had hers cancelled as she needs another operation.  She is absolutely gutted after struggling with chronic pain for years.  Yes, she has another condition that is causing her pain and obviously requires treatment, but she has a back story that is very similar to mine and so many others – an initial back problem from a bulging disc, several failed  surgeries and the resulting pain which nothing helps.  Drugs, side effects, sleepless nights, the desperation that sets in to find something, anything and it becomes a vicious circle.  By the time we arrived at the inpatient programme, we two had definitely been round this block several times and taken our respective families with us.  But we gelled immediately and understood each other, so this is why I can understand how desperate my friend is now feeling because I’ve been there.

Personally, I’ve felt rough for the last couple of days and I think that I probably have tried to carry on and overdone things.  The overwhelming need to be able to tell everyone that you are feeling great and that yes, it has absolutely all been worth it, is enormous.  On Friday I decided that I needed to show my face at a coffee morning hosted by the head at my daughter’s school.  A downside was that it was from 8.30 am – a dreadful time of day for me.  But I made it and my friend and I duly poured coffee and snacked on mini danish, before the first friendly face popped over to say hello.  This was followed by a couple of other parents, and then I spotted a friend talking to the headmistress, who has been very supportive of the whole family over the last year.  She immediately wanted to know how I am doing, as did my friend whom I haven’t seen since the beginning of term.  I could feel myself becoming clammy and faint, and the ability to speak with any clarity disappeared rapidly as my senses seemed to fail me.

On returning home – still only 9.30am – I had 2 more visitors during the course of the morning.  Whilst it was lovely to see everyone, I just felt like I was on a loop as I tried to describe the effect that the stimulator is having, no it isn’t a cure, hopefully it will help me to be able to function better etc., etc.  Someone else has commented today that I seem to be disappointed in my stim results and I am sorry that I may have given this impression.  It certainly hasn’t given me a magic wand to waft away all the pain, and the relief I experienced during the trial was different to that which I’m feeling now.  I’ve already mentioned that I require a higher level of stimulation voltage on the lithium battery, and that I can understand that I am adjusting to and thus becoming used to the sensations.  I am a bit worried that I will continue to need higher and higher levels of stimulation and will thus “run out” of options as I reach the top dose!  But rationally I know that this is a very long way off and that the changes are due to being more mobile and the stim is not yet scarred in place securely yet.  One reason that we are not allowed to sleep with the stim turned on, is that it is important for the body to have periods of non stimulation, so that it can really appreciate it when it is switched on.  The parasthesia should not become a new base line.

So it is tough explaining the results over and over, when the expectation is so high.  Our expectations on ourselves are the highest though, and we all desperately want this treatment to be the answer to our prayers, so if I can have more better days and nights than not, then I have won the lottery.

Half a life continued

On By Claire Saul (PainPalsBlog)In chronic pain, Spinal cord stimulator, UncategorizedLeave a comment

The journey to UCL was long and became uncomfortable, but the stimulation definitely toned down my usual nerve pain.  I was lucky really that I had been allowed to go, as I am officially the most embarrassing mother and there was great concern in the back of the car that I wouldimages (4)
say something awful to the flatmates!  My idea of awful and his do vary greatly.  I was allowed in th
e flat but Duncan was informed that he wasn’t allowed to leave me – charming!  The flatmates, 2 girls and one boy, were all perfectly charming and chatted – I do think the problem is in our stude
nt’s mind……although maybe they were all grimacing after we left!! ha, ha, ha.

The disappointing thing that I found yesterday was that the stimulation didn’t prevent me from losing my left leg as I got out of the car.  I am sure that fellow nerve damage sufferers know what I mean when I describe a leg and foot that loses all feeling and just gives way, particularly after a period of sitting.  The strangest thing was that whilst I couldn’t feel my foot at all, I was completely aware of the stimulation – parasthesia to use the medical term – within it! Oxymoron or what!

Whilst the realisation that the neurostimulator can only do so much may be tough, it was the right decision to make that journey.  There have been so many times over the years that I have been asked why I am pushing myself to do something that seems at odds with a chronic illness, and this is where the double meaning of the “Half a Life” title emerges.  When you are in the midst of a chronic illness, in my case constant nerve pain, it is all too easy to give up on life.  Those of us at St Thomas’s pain programme earlier this year have lost so much already – lost careers in the room included anaesthetist, horticulturist, barrister, nurse, sculptor – and we are the tip of the iceberg, our careers are just the tip of what we have lost.  It can feel like so much of your life has been swept aside in a flurry of failed surgeries, drugs and their side effects, hospital appointments, benefits application forms and appointments and judgements and then appeals, until the day arrives when you don’t recognise the person looking back from the mirror any more.  The pain becomes so overwhelming that it is easier to stay at home in pyjamas than to meet a friend for coffee, or attend a meeting, or go for a walk, or do any of the things that made life more than Half a Life.

Whilst I was on the programme, I met more people who had tried to take their own life in the last 12 months than I ever have.  We were one of 2 programmes running concurrently: ours for people for whom all other options had failed but who had a condition which might respond to scs, the other a 4 week course for those not quite at the same point or with a pain condition affecting multiple areas of the body.  One lady, with fibromyalgia affecting her head, was told by her own sister, a nurse, that “pain is pain – it is all the same, so get over it”.  Believe me, it is not!  This poor woman has tried to commit suicide twice and was struggling to come to terms with the news that there is no cure for chronic pain.  (www.fmauk.org)

One focus of the inpatient programme was the baggage we are carrying that is preventing us from living the life we wa‎nt to.  Some of it is impossible to lose, but there are ways to make it more tolerable – haven’t worked out how I do this with teenagers yet! Some baggage is unhelpful, unwanted or downright destructive and needs to be dumped – but may be difficult to let go.  Our state of mind is bound tightly with our physical pain; emotions, expectations, relationships all playing a role.  When I was 18 I met a new friend, and he introduced me to his mother.  She had been left disabled following a failed epidural years earlier, but had never managed to move her life forward.  Now I have empathy and comprehension of her situation, but my overriding memory is still of a sad lady who was always in her dressing gown with a glass of sherry in her hand no matter the time of day.images (3)  I made Duncan swear that he would never let me become like this – no funny comments here!!

So I continued to organise the school fete, became a governor at one school and a Friends committee member at another, taught myself to make and ice celebration cakes, held coffee mornings and dinner parties. At times it is too much on no sleep.  It would be easiest to say “no”, not to take that car journey to drop my son off, but then I wouldn’t be living even the Half life that this illness has left me with.  (to follow – page re:Living with Chronic Pain – pain buddies please email me any info you would like included, claire@saul.im)

 

Who else is out there?

On By Claire Saul (PainPalsBlog)In chronic pain, opiates, Spinal cord stimulator, Uncategorized1 Comment

image

Today we had our annual boiler service after a frustrating afternoon yesterday, sitting in waiting for an engineer to arrive.  The phone call came at 5.15 to tell us he was stuck on an emergency – really? You couldn’t have called before?

Anyway the engineer duly arrived this morning, just as I was getting ready to go out for coffee with a friend.  I found myself apologising as I walked into the kitchen and gave him an eyeful of plasters and gauze, as I was adjusting my jeans waistband over the top of everything.  This led to me explaining I had just had surgery, one thing led to another and, as my kids would moan, I gave him my story – “omg, here we go. Why do you have to always tell people?” ,”maybe because they ask!” – and he proceeded to tell me about his brother.

As a 12 year old boy he was involved in a hit and run, which has left him with disabilities that have worsened with age.  He has had numerous prolapsed discs, the same old story with lower limb problems and various surgeries over the years.  He worked as a carer for adults with learning difficulties but has had to stop, and is now living with chronic pain on a cocktail of drugs. All by the age of 40……life begins and all that!  My buddies from St T’s and those on the PainSupport forums will all recognise this story.

I suppose my reason for mentioning this, is that most of us have no idea of the number of people living with chronic pain everyday for years, in this case for a lifetime. Chronic pain is not like a broken limb or even a disease like cancer – it cannot be seen, there is nothing to cure and the sufferer often looks “well”. The effects can truly only be understood by others who have suffered – the way in which it silently encroaches on all areas of your life, taking the joy out of simple pleasures, can be truly devastating.  I really believe that I would be a much better nurse now, with a deeper, first hand understanding of my patients’ hopes and fears because of my own experiences.image

So, the British Gas man went home to his brother armed with the hospital details for the programme, this blog and my contact details – just to know that you aren’t going through this alone and there is someone there who really does understand what you are going through, makes this world of chronic pain a slightly easier to place to inhabit.  To be continued…

More juice required!

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

Yesterday I managed a trip out for a couple of hours to our local shops and we had some lunch.  I kept the stimulator switched on and it is the strangest feeling as you know you have this electric current buzzing inside you, yet nobody else has a clue.  I seemed to run into people I knew at every turn and everyone was so kind, but it wasn’t long before I was desperate to get home and avoid more conversation.  I know that people mean well but sometimes the last thing you want to hear is “you look so well!”when you feel ghastly.

My old friend was back with a vengeance last evening, running the length of my leg and searing through my foot.  I struggled to get any comfort initially and emotions were running high.  Since the trial device has been replaced with the implant, I have needed to increase the level of input in order to feel the same stimulation in the same places.  When I couldn’t prevent the foot pain I started to feel bubbles of panic rising – “what if I become too used to the sensation too quickly and it is no longer helpful? What am I going to do?”.  This was the time to employ some of those other techniques we were taught and to squash the panic with the voice of reason.  If I need to use a higher rate of stimulation to achieve the comfort I need, then so what?!

So it was that I did 10 minutes on the exercise bike this morning and then managed a decent walk with the dog and Duncan,  Duncan says that he can notice a difference in the quality of my walking too which is an added bonus.  More in the morning as I’m nodding off here!

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.

So, here goes……

On By Claire Saul (PainPalsBlog)In Blogging, Blogs, chronic pain, Spinal cord stimulator16 Comments

“Why do you want to write a blog?” was my teenage son’s reply when I asked him to set this up.  That’s as good a place to start as any.

On Friday, tomorrow, I am due at Guy’s hospital brightand early for a neuromodulation trial – the implantation of a spinal cord stimulator (a  sophisticated internal TENS!) to help combat the chronic pain that I am suffering. I have read and watched various accounts online of other people’s experiences, but I want to try to put into words how this experience feels for me.  I would like to share my journey (at risk of sounding like I’m on X Factor) with my friends and other fellow chronic pain bods – you know who you are – all to be known as my Pain Pals!

I will try to update you on my progress regularly, as well as adding elements of my history and the often strange and laugh out loud moments of a body disabled by pain.

So back to my son’s question……I think that I am writing as much for me as for the rest of you.  To help to inform my friends and family, to get my own thoughts and feelings out and, if I can, to help anyone else out there who is living with chronic pain.

Nil by mouth shortly, early start tomorrow morning.

Thanks for joining me,

your pain pal,  Claire