Panorama

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!!

Sorry to have been away……

It has been over a week since I last posted and during that time our household has been hit by a variety of ailments from migraine to ladies’ problems to chest infections.  The yocomic conungest is into her second week of half term – 2 weeks!  I remember only getting 2 days for one of our half term breaks – the middle started his half term with a trip to Comic Con London – grown people running around dressed as comic book characters! – and I believe that our student is on a project week before reading week next week.  Reading week indeed – the university term only started at the beginning of the month.
The last week has been a bit bumpy for me.  I can safely report that the stimulator doesn’t help certain pains of a female variety, but I already knew that these symptoms exacerbate my back pain and so I spent a couple of miserable days at the end of last week.  It was probably rather ambitious to imagine at the beginning of the week that I would be able to attend governance meetings on consecutive nights – but I did manage the first one.  I won’t lie – it was a struggle.  Sitting for several hours in an upright seat and trying to concentrate and participate was much harder than I had anticipated, but I consoled myself that I was only just over 3 weeks post op.  But I really wasn’t well enough to attend the training with my own governing body the following night – I’m really sorry that I probably picked the wrong session, fellow govs!

As I become more mobile again, I am having to learn how I need to use the stimulator to best help me.  The change in weather is always a problem for most chronic pain sufferers and is also a problem for those with added joint issues like myself.  I know that I have already posted that the level of stimulation has changed since the permanent implant,  and I am probably a bit paranoid about increasing the voltage level.  When you have taken a mixture of strong medication for years, and you have been trained in pain control in a previous life, it is very hard to lose the mentality that says your body becomes tolerant  and therefore requires more and more for the same level of relief.  Of course in the case of opiates this is true to an extent, but please don’t be mistaken for this being the same as addiction – as hospice nurses we struggled every day with the false belief that it is better for someone in pain to resist drugs as they may cause addiction.  In the majority of cases all the time an individual has pain, the correct analgesic will be used by the body like a key in a lock to fit the pain receptors and thus inhibit them.  Finding the correct key for the lock is not always quite so easy…. Of course this does happen to a degree with the stimulation and thus with the low frequency stimulator that I have, the hospital instructs patients not to use it continuously in order to avoid creating a new “norm”.  Does this make sense?

I managed a dog walk at the weekend with Duncan and am happy to report that I was far more comfortable with the stimulation switched on.  My mobility and stamina remains hampered by the pain and stiffness at the fusion site, but it is great to be able to have some control over the leg pain.  I am still playing with levels in order to sufficiently cover my foot – I might just have to make do with a nice, new pair of boots!!  Saturday afternoon provided a perfect opportunity to sit down and recharge my battery in front of the first semi final of the rugby world cup.  Not sure I’ll ever get used to saying I need to charge myself up, and I must stop talking about being “turned on” or “off” as the former has produced some very quizzical looks……..

Time for a photo op – no, not related to that last comment!! – I had let the battery run down to 50% as instructed and the charger had already been powered by the mains.                                                        imageimage

The above pictures show the positioning of the paddle over my stimulator and the charger – the paddle is very reminiscent of the paddles on the defibrillator that used to be on resuscitation trolleys, although it doesn’t deliver such a hefty charge!

The charger is showing:

top row: my stimulator turned off, the volume, my battery at the half full mark

middle row: the imagepaddle making contact with my stimulator,

bottom row: the level of connectivity between the paddle and my stimulator, in this case it is poor with only 2 boxes filled out of 8.

The charger is now showing full connectivity between the paddle and the battery as all 8 boxes are filled in.image  Whilst in theory it is possible to be ambulant whilst the charger is strapped to your back, in practice I would say that the level of connectivity is quite positional and thus use the couple of hours it takes to watch a film, read or watch the rugby!!  It was a great match.

A gaggle of girls has just arrived home after a day out in Brighton, so time to put the pizza in the oven and prepare for a very giggly sleep over.