Blogging plot twist shocker

I have been off my game and my head has been studying, it seems, for a new career in gastroenterology. I have been dealing with the aftershocks of the kind of devastation that happens when your marriage explodes and you are left wondering if your (soon to be ex) husband is made of asbestos, what to cope with all the flaming trousers he has. So yes, demons that are still popping up if not quite as often. Current state: Low activity but not yet dormant.

The point of me saying this (and I don’t normally say anything like this) is that for the next couple of months I am going to deviate from the normal topic of my blogging (even if there hasn’t been much blogging going on over this last year). Rather than document the trials of school holiday survival I am going to be documenting something I always hoped would happen but feared would not. I will also be trying to do so without losing my sense of humour. Today was my first day of my opiate reduction programme. In about six weeks the goal is to be completely off opioid pain medication

As this is a topic I again very rarely talk about I realise I will have to give a primer of sorts on what this is all about and what it ultimately means.

So, I’m going to tell a story, just sit right there, about why I’ve been on Oxycontin for well over 12 years.

This is a painfully (haha) long story I am going to try and condense into a couple of paragraphs so I will probably end up filling in blanks in future posts.

Pain. Chronic Pain of the ‘bloody difficult to properly diagnose’ variety made itself at home and comfortable following an atypical pneumonia, lifelong gastric issues around a congenitally defective gallbladder that was finally removed after it had done most of the damage it could when I was about 23 – 21 years after it started throwing up issues, multiple abdominal surgeries, an infection that triggered even more scar tissue around the liver that ended up linking my liver and diaphragm with scar tissue and finally a progressing problem with either my nervous system itself or the way my brain understands the information it receives (my money is on brian confusion because, well, it is me.)

So that was the picture about 12/13 years ago. Chronic pain understanding and research is in it’s infancy now, back then it was embryonic. So little was understood about Chronic Pain Syndrome (the catch all for ‘the pain, the pain, why won’t it end, what the heck of wrong anyway?’) that the very few doctors who did specialise in pain management (there was 1 in the whole north west) where feeling in the dark and experimenting to try and find a way to help patients like me. This led to me and lots of others like me to travel along a path of ever increasing pain medication finally busting through to morphine and then to the more potent still, Oxycontin.

Since then there have been huge leaps of understanding and development in the world of pain and to cut long (and I think very interesting but I am both invested and odd) story short it has been found that opioid medication is actually more harmful and likely to actually make more pain when used over long time scales and with chronic pain.

It is however never a simple matter to come off opiates, especially after more than a decade of doses equivalent to 280mg of morphine. It is scarey enough with the physical withdrawal symptoms but there is also the fact that pain increases in the short term and also that I am not coming off Oxycontin to go on another, better pain medication. I am just coming off it, no replacements. I do take other meds that work well and I started with plasters infused with local anesthetic to deal with some of the pain caused by touch about six months ago in preparation for this and I also plan to have a second trial of TENS once the Oxy is gone to see if is more effective than it was six years ago the last time I tried but that’s it. I am heading into the great unknown as it is hard to tell how I am doing with the Oxycontin as picking apart drug reactions from symptoms gets impossible so it won’t be possible to know how this is going to work out until it is done.

I have been on a total of 140mg of oxycontin for the past decade, sometimes a little more but been steady for four years now. 80mg of that is split between two slow release tablets taken every 12 hours. This is my core baseline and for now is not being messed with. The other 60 mg are split between three immediate release capsules taken three times a day, these are the first on the chopping block. They have gone from 20mg to 10mg. I have two weeks like this before the next drop. I have to get down to 60mg daily total before I even hit the maximum amount a patient should be on per day ever going by the British Pain Society’s newest guidelines. It is going to take 3 weeks to get to that point.

Now coming to the end of day one I can say, well, ouch. Mainly and mostly ouch. I hurt in places I didn’t think I hurt anymore. I’m a massive grouch with no patience, my head is booming. This is going to be crappy.

So here’s the rub and really quite tough bit for me. I will just type out the bit from the Opioid Management Clinic report and leave it at that.

‘We discussed the need for support during the process of opioid reduction. The patient has no local family support moreover much or her stress generates from struggling with work and home-life balance. The patient does however have some very good friends and good social support from the community locally.’

Emergency exit

Oh dear.

How quickly resolves crumble in January.

Unfortunately although my life has had a run of fun and games in the back half of this last week and I would love to write about I can not due to that pesky rule of mine. One day I will be able to and it will blow your mind. One day.

As an alternative and as I have neglected my writing duty I shall give you this.

Let us go back through the mist, 3 years ago this coming week

mist

Pictured: The mists of time… probably

It was as normal a day as I am ever likely to achieve. The children had gone back to school and pre-school the week before after the Christmas break. I was feeling free as I headed to the riding school to have some horse time before going to my final appointment with my exacerbated councillor who had unfortunately for me sussed out my mastery of avoidance.

After a normal mornings work I hopped onto a horse called Whisper who my brain insisted was called Flicker and would not see reason on the matter. I was trotting around, like you do, completely absorbed in the argument I was having with the Flicker/Whisper beast about the merits of rear wheel drive over front wheel drive when he suddenly morphed into a bunny rabbit crab beast and leapt violently upwards and sideways.

The world went into slow motion and I had time to contemplate that I could either try and hang on for dear life but probably fall off anyway in an even more embarrassing manor or I could just go with the flow and fall off without bothering to do the hanging upside down under the horses neck like a pig on a spit. I went for the second option and that proved to be a rather costly mistake.

Time dutifully returned to standard speed as I hit the ground, on my feet, given in youth I had experienced a similar unplanned exit with cat landing and managed to loose half the bone in my right ankle for the trouble my helpful brain instinctively protected this vulnerability by allowing all of my weight and motion to go through my left leg. Second costly mistake brain.

As all of us unhinged enough to think climbing onto an flight animals back know the first thing you do after an unfortunate parting of directions is jump up, dust yourself off and demand to get back up. I did that but unfortunately went down again the moment I tried to take a step. Still convinced it was just a flesh wound I attempted to rub the tingling that was running up both my legs away and tried again, no dice, couldn’t even get up this time. Dam.

I was still in denial when my good friend (who is so not the manager or head instructor) suggested we remove my boot. It took the two of us some time and a great deal of pulling and wriggling to remove my boot from foot and when it finally came off I knew I was in trouble when I had to catch my foot. I seemed to remember that traditionally the foot is supposed to be connected to the leg in someway and shouldn’t behave like a broken baguette in a bag.

I was still reeling out ideas of how I could hop to the car or maybe hitch a ride in a wheelbarrow while friend phoned for an ambulance. The pain hadn’t really hit me at that point so my biggest concern was that my councillor was never going to believe my excuse and just think I was displaying an exacerbation in my avoidance behaviour. I remember phoning a friend and asking her to call the surgery to let them know I wouldn’t be there and asking her to make sure she left the councillor a message to say it really wasn’t on purpose and I had actually acted on what we had been talking about. Honest. I don’t know if that message was actually ever left or got through as I never saw the councillor again. Not that I was avoiding her or anything…

Anyway. After a short wait a shiny and as it turned out, brand new ambulance on it’s first ever run arrived at the stables and pulled round through all the mud to where I sat in the dent in which I had landed. I liked the ambulance crew as they brought me gas and air and that stuff rocks, they where less keen due to all the mud and muck I brought to the shiny new ambulance.

After leaving the riding school a farce naturally ensued that involved them first driving my 5 miles west to the minor injuries unit in Witney as for some reason they thought that even if something was broken it was all where it should be. On arrival at the unit I waited with my old friend entornox close at hand for a medical professional to come out and see if they would have me. When somebody arrived (far too high to remember a job title at this point) they took one look and said no chance.

We then had to drive the 10 odd miles back east to the Accident and Emergency unit over in Oxford passing the riding school on the way with benny hill music playing in my head I was thankful that I was just about high enough to not swear with great abandon or be able to string enough words together coherently to give an accurate insight into my opinion about every single bump in the road and the outrageous pain it brought. I tried with limited successes not to resent the fact I had now traveled over half of them once already needlessly. Even in a fairly rural location like this you don’t really expect to be in the back of an ambulance for over an hour even if it is a brand new one on it’s inaugural patient journey.

It was mid afternoon when I finally arrived at the big hospital with it’s hard drugs and x-ray machines. A few hours later I had been x-rayed and had the news

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Pictured: Is it meant to look like that?

Not only had I managed to break my ‘good’ leg I had gone for the maximum impact of breaking it in three places. I was plaster casted from thigh to toe (twice as they got it wrong the first time) and removed after midnight to the ward to await surgery the following day.

I left hospital a week later with a large amount of metal work, little memory of the week that had passed due to all the lovely, lovely, drugs and in a wheelchair as due to all my pre existing physical silliness using crutches was considered suicidal.

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Pictured: Cankle

Recovery was long, slow, painful and only mitigated by the fact I could not only scare children but medical professionals when my dressing where changed.

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And about that recovery bit, three years down the line and I am as recovered as I am ever going to be. I can do almost everything I could do before but less well and with more pain. Combined with my pre exiting condition it has been a tiny bit disastrous and hastened progression but considering there was a time when they thought I would lose the leg and I was completely okay with that due to the pain, I am not really in a position to complain.

If I want to be a bit soppy and fluffy I can say how I don’t know how I would have got through it if it hadn’t been for my great friends, fab Mum and wonderful village who all came together to make sure I had everything I needed to get back on my feet again (literally and figuratively).

One pair of friends summed the whole thing up beautifully with a lovely picture they sent me (and is still up in my living room today) as they couldn’t travel to see me.

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Pictured: Yes. just yes.