Retune & Reunion

Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group.  I went with mixed feelings.  Eagerness to see friends who understand me and trepidation for who the scs had been successful for.  Last May the eleven of us had such high hopes, desperate hopes.  But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us.  I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.

As it happens I needn’t have worried.  I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose.  Any suggestions out there for coming down from this final  12 hourly 5mg gratefully received!  My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet.  But I did get a retune!! images (16) On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse.  Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same.  It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting.  Win, win.  Back to the INPUT session ….

Only 3 of us turned up. reunion Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury.  It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on.  We did meet some of the participants in week 3 of a 4 week course which was interesting.  A couple of them had already had stimulators which had failed – one lady had received 2, both failed.  Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully!  Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square.  I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means  ALL NIGHT.  I’m so jealous!!

We both have similar stories, similar failed surgery and pain in the same areas.  The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things!  Who do you believe?  I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future.  Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!images (17)

One day at a time

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

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?

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…

6 Hours Straight!

I slept for 6 hours straight last night! My pain buddies will appreciate just what a huge deal this is.

When we were on the 2 week inpatient programme earlier this year, we very quickly discovered that everyone in the group suffered from sleep deprivation.  The effects of lack of sleep combined with constant pain are draining and far reaching. Have you noticed how everything seems so much worse in the early hours of the morning?  Every one of us struggled to be in our clinic room at the start of each day, but we all understood the tremendous effort required. I have seen the looks when I try to explain that I’m unable to make commitments first thing in the morning: never able to predict when I will be up all night and then waiting for medication to start to kick in.  When one of our number at Tommy’s managed to crawl down one morning, but had not slept and was in too much pain to even change out of her pyjamas, we all got it.  Most people don’t and that is just the way it is.

I managed a visit to my parents house this morning to see my godmother for her birthday.  The timing tied in nicely with my son’s driving lesson, so I suggested that he drop me off. After all it is only up the road.  The response was that it would take the whole lesson just to get me in and out of the car.  Fair point, I guess, as the car is a mini!  Whilst the surgical pain was quite severe this morning, as I believe I didn’t move during that 6 hours, a dose of paracetamol helped to ease the feelings and thus I let the stimulator take on the cold and wet weather

Cold, damp conditions are always bad for me, increasing both the back and leg pain.  So I have had my Medtronic Stim on for longer periods,at about number 4,doing battle for most of the day – and winning! The relief to be able to squash the pain to something that I can cope with is a very emotional experience.  Another friend has already had the full implant and says the same thing, that after years of pain the touch of a button could be the beginning of something new.

Apparently I return to St Thomas’ tomorrow for a follow up! A letter arrived this afternoon – good job the post wasn’t as late as it often is.  It all feels quite speedy, but equally I’m eager to have a plan for the next stage of the procedure as it feels like life is on hold for the foreseeable future.

Thanks, Tina, from Pain Support for agreeing to share your experience here. I will add a page with some information about neuromodulation, the St Thomas’ programme, the different trials, devices etc over the next few days.  Meanwhile fingers crossed for another 6 hours, or maybe even 7!