Tag: pain

Reflections and resolutions

On By Claire Saul (PainPalsBlog)In chronic pain, Depression & mental health, Ehlers Danlos Syndrome, UncategorizedLeave a comment

The end of the year always feels like a time for reflection, doesn’t it? Or is it just a time for looking ahead and making those dreaded New Year resolutions, only to broken by Jan 5th!?  I really, really want to be looking forward for my own sanity and for those around me – but not before I reflect on this year.  Please indulge me……

It has been a tricky year in our house for a variety of health issues and the related monetary concerns that being unable to work brings.  It is almost exactly a year since Duncan was given the correct meds for his depression and was able to start on the long road to recovery.  At first, when he was so ill and unable to think straight, he was adamant he wouldn’t take drugs.  During my time nursing I cared for many patients and relatives who resisted antidepressants and we had the “if you had a headache you’d take a paracetamol; you have a chemical imbalance that just needs a little extra help to be put back to normal” chat.  At least when it was my own husband, not only had I this medical experience, but I had also been there myself just 2 years ago.  As a society we still prefer not to discuss issues of the psyche, whether our own or others – there remains a stigma around mental health problems.  Maybe this is part of the reason that so many of us feel an overwhelming need to refuse medication – feelings of shame, embarrassment, failure, fear, addiction concern, to name a few.  I remember feeling like a huge failure when I joined club Prozac and illogically ashamed.  It took several months before Duncan was convinced of the need for chemical help and then the first drug only went and made his symptoms worse.  But with great support from our GP and the correct drug, he has made progress.  We would probably both say, about each other, that seeing your partner in the grips of something that you have no control over is the hardest thing to witness.images (10)

Then one of our sons was also ill and this really did knock us for six, as we had never seen him like this before.  It emerged that he had recognised certain symptoms when reading articles with titles such as “Existential depression in the gifted and talented adolescent” – I was lost by the end of the first paragraph!  Happily with the right support all round,  we all have a better understanding and things are back on an even keel.  But our youngsters today never switch off.  They are constantly over stimulated as they rely on social media to communicate, and have a powerful hand held computer in the shape of a mobile phone on tap 24/7.  Overthinking has always been an issue in the very bright, but I wonder if we will see it increasingly becoming the norm?

My appointment with the specialist pain team at St Thomas’s came just in the midst of these crises.  I warned the psychologist that she had caught me at the end of a particularly stressful and emotional week, but she told me to describe everything from the start of my back problems.  “But that began in 1991 – should I really go back that far?” “Yes, please” “How long do you have?” Poor woman didn’t quite know what had hit her!!  This in turn led to my 2 week inpatient programme and subsequently the implant.  It all sounds terribly easy like this……

I have had some highs and lows over the last fortnight.  One real success was a trip to London to visit the student with the other teenagers.  We decided to brave the train rather than London Xmas roads, and I even had a member of BR help me to get into the carriage which made me feel about 90!  We had a lovely meal on the South bank and then enjoyed following our three offspring around the Xmas market. download (2) So nice to see them actually getting on.  In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress.  We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo.  It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike.  That was one very long trek and never has  Waterloo  bridge felt so endless – it took 45 minutes to get me across the bridge alone!  A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.

But I have also learnt that the stim can only deal with so much!  As the weather has become colder over the last few days and the nights have been so windy, so my barometer body has played up accordingly.  My EDS has left me with extremely painful shoulders which dislocate regularly – Duncan monitors me when asleep to ensure that I haven’t lifted an arm above my head…and the weight then pulls itself out of socket!! The back pain at night has been reaching a peak and I actually fell asleep with the stim turned on, and a trip to our local shops became extreme as both the weather changed and my leg pain rocketed.  Even the stimulation couldn’t do battle with the nerve pain exacerbated by cold wind and rain – we couldn’t even stand upright – and the then familiar nausea and vomiting that follows when my body experiences large changes in temperature.  In this case it was stepping into our warm home!

For someone living with a chronic condition, looking forward to a new year can become something to dread rather than to celebrate.  At times the thought of living through another year in pain has been too much to contemplate even with the love and support of family and friends.  So this New Year, as others resolve to try that new diet, join the gym, do “dry January” etc., etc., I will continue to take each day as it comes.  As a family we will move forward together, continue to battle the intricacies of the benefits system, look toward Dunc returning to employment (albeit on a different level), the kids being teenagers(!) and for me to cautiously look to a year with some control over my body, that has been stolen by chronic pain, being restored to me with my stim.  I hope that we can remember that there is always someone worse off ……

Finally, after a very long post which I started on NYE, as you recover from festivities – I wish all my Painpals a peaceful and healthy 2016! download (1)

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!

 

I’m still alive

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

This evening I heard a young lady of 18 state that she wakes every day in pain, but “the pain lets me know that I’m alive”.  

She has suffered with juvenile arthritis since she was a little girl and has chronic pain in every joint in her body, yet she is taking part in the Children in Need rickshaw challenge.  A team of 6 youngsters, each with their own special story, started their journey yesterday at Land’s End, and will cycle across southern UK to arrive in London next Friday for the live BBC Children in Need event. 

 
What a wise head on such young shoulders!  I will try my hardest to use this philosophy on waking each day.

Support Team Rickshaw at http://www.bbc.co.uk/programmes/articles/vgrPhwRvgf4Gb4XkM0NXXB/the-rickshaw-challenge-2015

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.

Apples & Pears

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

Last night I dreamt of Manderley……..oops, getting carried away and a tad confused, no Daphne du Maurier am I.  But I really did sleep last night and dream! Slightly odd dreams, but I only woke once which meant I managed a 6 hour stretch again.  No mean feat as the implant site is really painful.  But to wake in the morning, after so many years failing to sleep, and to know I have had hours of unbroken sleep is just wonderful.

I had another slight bleed last night from a different area, so Duncan has added another dressing to the patchwork.  One problem of course is, that as the blood dries, it becomes very stiff and this makes the whole area even more uncomfortable and itchy.  I hope that I will be given some instructions tomorrow about outpatient appointments, dressing change, suture removal – anyone else out there who can tell me if I’ll go back to St T’s or have it all done at my GP’s? Of course, I do have access to my own supply of nurses who did all my dressings after my last surgery…..

Something I need to clear up is that yesterday’s comments regarding the household chores was directed completely at those living under the same roof as me!!  I will quickly point out that yesterday help was on hand in the form of my fab mum, otherwise known as Mrs Mop in Dad’s post, who not only tackled the dog hairs and bathroom, but also braved her granddaughter’sbedroom.  And that is even worse than her grandsons’!!

Duncan spent the morning in the garden, enjoying the last of the summer sun and mowing the grass, for what he sincerely hopes will be the last time.  He gathered cooking apples and pears – I don’t exaggerate when I say that the tree is groaning under the weight of pears.  With my Medtronic Stim switched on, Scotland v USA on the TV, I perched and I started peeling!  3 crumbles and a pie later, I was pretty pleased with myself. It was the surgical pain rather than my pain that finally got to me, so I’m feeling very positive.  The only fly in the ointment today is that I am unable to turn “on & off” with just my programmer “MyStim”, having to use the additional antenna attachment instead.  This may be to be expected whilst the wound site settles…..or I might be doing something wrong. Anyone out there with any experience or answers?

So to the other “apples and pears” as I wend my way to bed and hope for more sweet dreams tonight!

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.

Bad Hair Day

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

I don’t know if the long day  just took its toll, or if the nurse used some caustic cleaning agent, or if the mushy peas on my fish and chips supper were to blame, but I didn’t sleep last night.  The itching from the new dressing was awful, the surgical pain was worse and the damp was aggravating my nerve pain.  At 5am I could be found, much to Samson’s disgust, drinking tea, reading the paper and listening to Vanessa Feltz – I know!!  Sam’s expression said it all.  So today I have felt very like I remember after I returned home from a night shift.

The surgical pain is starting to settle – shame it has to start again next week.  Another definite downside to a longer trial is that the time being unable to bath or shower increases and today my head was starting to itch.  What is a girl to do on a bad hair day?  I couldn’t bend over a bath tub, so my lovely friend and hairdresser Bev came to the rescue with a wash and blow dry at her house.  It wasn’t easy positioning myself at the hairdresser’s basin, but I tried really hard to use some of the coping techniques learnt on the course and as usual Bev made me look, or my hair at least, a million dollars.

I think that I’m getting to grips with the Stim controller and have found which levels suit me.  We are instructed with this particular stimulator to alternate between 2 hours on and 2 hours switched off, and then to switch it off at night.  I will write a “page” detailing how the stimulator works and some more technical info.  However when we left the house yesterday, the boys were in the kitchen discussing what would happen if they were to connect their poor old mum to the transformers for the kitchen lights.  This really would give me a bad hair day! download (4) The last words I heard as we were leaving were “how quickly would that fry the brain?”.

NOTE TO SELF: do not leave controllers anyway near UCL electronic engineering student son!  We won’t have heard the last of this!

Day 1 R&R

On By Claire Saul (PainPalsBlog)In chronic pain, Spinal cord stimulator1 Comment

The procedure was one of the strangest experiences – and lets face it, I’ve had a few ops over the years.  The first difficulty came when the operating department assistant (ODA) asked me to jump up onto the operating table – and then lie on my stomach.  A near Olympic feat for someone with back pain, a dodgy leg and foot drop!!  The consultant allowed me to choose which type of trial I opted for – explanations later! – and so began the placing of tunneled electrode leads into my back with arrows drawn in marker pen.  I was asleep for the actual placing of the leads and then woken up to assess if the electrodes were in the correct area of the spinal cord nerves –

“can you feel that, Claire?”

“No…” still feeling very groggy

“How about now?” to an immediate pulse of the strongest pins and needles you have ever felt.

“Yes, but it is in my stomach and around my ribs” Fully awake now!

“Think we need to change something here, team!”

And so the currents to the various electrodes were played with until the feeling was covering my leg, my foot and my back.  I even have some coverage in my good leg and this is with just one lead.  For those of us who have been patients on the St Thomas’ pain unit, we know that this is something special having been warned that it may not be possible to cover pain in more than one location.  In recovery I was reminded how to use the temporary battery and charger, before returning to the ward – I was in theatre for about two and half hours and another half hour in recovery.  Of course thoperation_1533715e medics never commit to a timings but I believe that a trial can take anything from an hour to several hours on the operating table.

Back on the ward I needed to complete every surgical nurses’ post operative list – the obligatory cup of tea and sandwiches – Ben, you were dead right – check, trip to the toilet – check, be up and moving – albeit slowly, check!  Then TTOs (medication to non medics – antibiotics and pain killers) arrived and I was free to go.

The trip home to Surrey on Friday evening through rush hour London traffic was not easy.  My back was starting to really hurt from the surgery as the operative drugs were wearing off, but I used the stimulator for my chronic pain – it is important to be able to distinguish between the two, not to use too much medication for the surgical pain and thus to be able to understand if the stimulator is working for the chronic pain.  Clear as mud to some of you.

My wound was bleeding after the journey, but I talked nurse Duncan through applying a new dressing over the original – it was drummed into us that it is very important not to remove the original due to the risk of infection – enjoyed some dinner and settled later for the night.  I used the stimulator before settling, as they should not be left on whilst asleep, and had a pretty good night for me!

Today has been quiet, a bit sore and I have been experimenting with the stimulator.  So far, so good – the feeling is the strangest thing, and until the lead beds in a little it is quite positional, so I am experiencing sudden surges of current. At the moment I’m wary to say whether it is definitely going to help me, but I think that for me the electrical sensations are masking the nerve pain and are preferable.  So fingers crossed, everyone, I’m cautiously optimistic.

Thanks for the words of support – I will post some more info about the actual spinal cord stimulator for anyone interested, and some musings about living with chronic pain, along with updates on my recovery and the future plan of action.cropped-girls.jpg