Day Five – The fall and fall of ‘Cave horse’

I have to be tucked up nice and early tonight as I have a half term date with destiny at the riding school in the morning. Early in the morning. Given how long it took to get my sea legs this morning I am going to need to wake early to take medication! Apart from, like yesterday, the getting out of bed issue today was pretty good, took kids (and Chicken the cat) to the park and then did a last moment light work job. I really can’t ask for this to be going any better so far, to the point that I am considering taking the next reduction step early (a flexibility that is built into the programme as you can’t know how it is going to go until you do it) to get the worst of the step down done before I have a longer job starting at the end of the month. Still in consideration stage on that but the fact it is a consideration at all is a little bit mind blowing really!

Given the time I have to write tonight you are spared a Chronic Pain lesson but instead get a dose of half term with the kids… and cat.

I will just let the picture do the talking when it comes to Chicken the cat, the kids and our trip to the park.

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Pictured: What has my life come to?

One our walk was done we settled in at home for the children to expand their minds… on Minecraft. I can’t even make it past part one of the beginers tutorial with this game before I am lost and at a point that I just can’t fathom. The kids, Boy in particular seems to have at least found a way to fake it in a convincing enough way so he has some fun. The Boy when he is Man wants to be a farmer, the most famous farmer in the land. He also is pony mad. He found a minecraft horse and after riding it around a bit it fell down a hole. The boy then spent the rest of his computer time trying to save what became christened as ‘Cave horse’ but Cave horse wasn’t having any of the rescue attempts and refused to climb out of the hole so Boy planted some grass and moved in a couple of sheep to expand his cave farm. The sheep got out and then, before our eyes Cave horse died. There was much upset yet the true horseman that is the Boy never blamed his stupid can’t even climb out of a hole by the steps made for it lovingly horse. Meanwhile the Girl, using mobile Minecraft (on my phone, why am I holding out on her getting her own until the summer again?) had been attempting her own, above ground farm but she refused to kill any of the animals, except when they went in her house, then they had to die and die good.

The whole set of conversations that happened around Cave horse, the boys attempts at cave farming, and the Girls picky bloodlust made me both question my life choices and if in fact, rather than lowering my opioid dose, it had been going steadily up and I am now just living in one long Oxycontin fog.

Day Three – Here today, hair tomorrow

 

I am having no luck today with writing anything vaguely interesting or even particularly coherent so this is going to be short and not at all sweat.

Today has been okay, not much has changed and nothing interesting to report!

I haven’t the energy or mental clarity to talk about any aspects of the world of Chronic Pain so will have to save any more information and backstory for another day.

Tomorrow, first day of half term (not sure if this timing was good planning or insanity. The pain team didn’t really seem to get that the children spending time in the holidays with their Dad was just not going to happen however nice it would have been) and I need to go into town so I can get a few bits done. As we are going anyway the Boy is going to have his hair cut. He has been growing out his last cut since September when the hair dresser seemed to disregard his with to keep as much length as possible while not having a bowl cut or a mullet. He still wants his Bieber hair with all his heart. The result as it stands is a hot mess of hair, I haven’t got a picture to hand of this tonight but will be sure to post the before and after tomorrow. The girl will have a trim, not because she needs or really wants it, she just can’t cope with the idea the Boy may get something she doesn’t. They had a fight last summer because the Boy felt the Girl had more sunscreen. I despair.

So I shall leave it at that tonight.

Day Two : Already out of good headers.

Have to admit that there isn’t a massive amount to say about day two. Started badly, took a long while for me to manage to be able to stand due to pain and I was a major grouch for the time it took for the slow release dose to hit the system and due to my quick release (proper name: breakthrough dose – due to it dealing with the pain that ‘breaks through’) now being half dose it was a longer shakier ride.

 

Chronic Pain lesson of the day:

A quick note about slow release pain medication (proper name: prolonged or modified release). It is rated to last 12 hours. It doesn’t. Not even close. In pain circles if your slow release gets you eight hours coverage of the rated 12 then you are getting the absolute maximum from that medication. Sucks as you absolutely can not take the next dose before 12 hours. This is very representative of Chronic Pain treatment, you are never going to get 100%, you’re never going to be pain free and you have to learn to make the victories from what ever you can because otherwise you are never going to get out of the pit of depression and hopelessness that comes with diagnosis and wants nothing more than to set up a permanent shop (more on that another day). The only way to successfully manage Chronic Pain is to build up a plethora of strategies that each deliver at least two thirds of the perfect and with that mosaic of sometimes baffling strategies you can learn to do more than just survive.

My old Liverpool pain doctor once stuck a load of needles in my head and left me for an hour during a very difficult time as I transitioned onto morphine. I had been in the consulting room most of the afternoon going round in circles trying to avoid the step to opioids. There had been tears and strops all round and everyone was at breaking point. If you were to look in my notes it would say that a trial of Acupuncture was given but everyone there knew it was just so my doctor could release some of the frustration. It broke the tension but unfortunately it was still the day of my first morphine prescription.

/lesson ends

Back to today and encouragingly the rest of the day was a little better than yesterday even though both days were equally busy (although to be fair in different ways) and I only found myself desperately clock watching for my next doses in the late afternoon. The withdrawal symptoms so far have mainly been irritability and headache (could just be Saturday at the start of half term though…), nothing too bad but the dose reduction still gives me the same interval of doses so far so I may find it harder on that front in two weeks when the dose drops again and I drop a whole dose of breakthrough. Managing pain level has been trickier, areas that previously had not given much trouble suddenly are again but I have been able to extend the use of the anesthetic plasters to help in one area. This bit of the report I realise is super dull. I’ll stop listing my owies.

Thank you to everyone who has reached out both by either leaving a message in public or private and to those who have let me know they are there without mentioning this, you know who you all are. Being so open about this is hard, the asking for support is hard but more so in some ways is the being open about life with Chronic Pain. It isn’t something I talk about because nobody wants to hear a list of every which way it hurts and how crappy the treatment options are constantly, so over the years as I have met new people, moved to new places and as life has in general moved forward there are many of my friends and acquaintances who know next to nothing about this side of me because when you are meeting new people there is never an appropriate or right time to say all this and people start avoiding the answer to ‘how are you’ by avoiding you so for lots of people in my life this is a lot of largely new information, so I am grateful for the support, I really am.  Along side my above reasons I also like not being ‘the sick one’, since I was a small child I was ‘the sick one’ and I don’t see myself as sick, I don’t see myself as brave or in someway inspiring (I have had people with the kindest of intentions put these label on me before and it makes me feel very uncomfortable) because I am just not, I just get by like everybody else with the hand I have been dealt, what else was I going to do? Crawl up in a ball and quit? I tried that for a few years, was disastrous for both my mental and physical health and my relationships with others. If you take the question to the extreme it ends up as, you think I am special because I haven’t killed myself yet, you would kill yourself if you had to live my life.

I know that nobody who has ever said these things means for a single second where the thought process takes you, but take you there it does.

Crap. This lost the tiny amount of light hearted and humorous it did have bloody quick. can I blame things on not having enough drugs?

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Pictured: Putting this on Facebook titled ‘Rockin Safety Selfie’ – something you can call brave and inspiring.

 

 

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.’

The dead rewrite Christmas songs now.

Okay.

So maybe I was dead after all. Seems plausible.

That’s settled then.

Until such time I want to torture you my dear (possibly imaginary) reader with my ‘woe is me’ pity party of the last *mumble* months my excuse is that I was dead.

Moving on swiftly before my excuse is thought about by anyone who has a degree in philosophy thus causing them to enter an inescapable reasoning loop for the rest of eternity (I risk losing a good third of my imaginary readership to this wretched trap).

The thing that has sparked me back to life like The Frankenstein’s monster’s ugly Stepsister is the direct result of the bulging lid I had been trying to keep on this whole ‘Christmas’ thing finally exploding off launching the children into Christmas song. The song was ‘Twelve Days of Christmas’ and we spent a good while in the car trying to remember all the words. This led to some artistic licence and in turn led to me writing up a new set of lyrics. I left out the Boys offering of ‘On the fourth day of Christmas my truelove gave to me, four Apricots.’ but I hope you like what I came up with.

*Note to any non UK imaginary readers, A and E is the Emergency room and Lurgy is general grotty illness normally sourced from snotty children*

 

 On the first day of Christmas my children gave to me

A trip to A and E


 On the second day of Christmas my children gave to me

Two siblings fighting

and a trip to A and E


On the third day of Christmas my children gave to me

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the forth day of Christmas my children gave to me

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the fifth day of Christmas my children gave to me

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the sixth day of Christmas my children gave to me

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the Seventh day of Christmas my children gave to me

Seven girls a screeching

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the Eighth day of Christmas my children gave to me

Eight doors a slamming

Seven girls a screeching

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the ninth day of Christmas my children gave to me

Nine teachers letters

Eight doors a slamming

Seven girls a screeching

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the tenth day of Christmas my children gave to me

Ten headaches humming

Nine teachers letters

Eight doors a slamming

Seven girls a screeching

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the eleventh day of Christmas my children gave to me

Eleven toys a maiming

Ten headaches humming

Nine teachers letters

Eight doors a slamming

Seven girls a screeching

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E


On the twelfth day of Christmas my children gave to me

Twelve bottoms burping

Eleven toys a maiming

Ten headaches humming

Nine teachers letters

Eight doors a slamming

Seven girls a screeching

Six boys a bashing

Five sleepless nights

Four bad excuses

Three weeks of lurgy

Two siblings fighting

and a trip to A and E

Not Dead

Hey, look, I’m not dead!

I just felt like I was dead for the best part of a month. It is my own fault for teaching the children to share.

I got the bug, I got all the different symptoms and I got it hard. Combine that with what I lovingly refer to as ‘all my pre-existing shite’ and I haven’t really been sharing the same planet as everybody else and even something as simple as throwing some words together and hitting ‘publish’ has been too much to contemplate at the end of the day.

Good news is that I am over most of the bug now and while the ‘pre-existing shite’ is having a bit of a party having gained my hard defended higher ground I shall be seeing the aptly named ‘pain team’ just as soon as I get to the head of the lovely waiting list and we can then hopefully tweak some of my medication, maybe throw in some more physio therapy and regain the upper hand. Until then I am just a bit slower, more tired, dealing with more pain and just ever so slightly off the ball. Try and stick with me as I build myself back up again terminator style.

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Pictured: Mad Cat playing Rambo up a tree because… cat

So what else has been going on, well lets see, my laptop hard drive felt a bit like I did and gave up so the laptop went for a holiday to the sick Mac hospital but has come back strong post transplant. The children have kept me ever amused with gems like when the girl exclaimed while playing a game ‘Oh, maybe I am not as good as I thought I was!’ and when the boy pitched a 10 minute fit about the location of his other shoe only to find it on his foot. The banned topic has also kept me busy banging my head against brick walls so thats been fun.

Time now to move onward and upward. We find ourselves just a week away from yet another school holiday and another daily holiday diary. I am throwing a curveball on this one by actually taking the children on holiday! We have to be out of the home while we have a new bathroom fitted to replace the one that was badly installed when the house was built in the early 80’s. For a moment I will put aside the terrible drainage, poor workmanship and lack of shower to say the most offensive thing that I will be glad to see the back of it the fact the sorry mess of a bathroom is peach in colour and more 80’s than shoulder pads.

So on the 16th The girl, The boy and myself shall take Bob on his first trip north as we head off first to Liverpool and then the following weekend Greater Manchester. For our time in Liverpool we are booked in for some solid Grandma time but if anybody in the geographical area wants to get together and be bored senseless by me and or the boy and girl please, let me know, I am needy and would love to see anyone who is willing to put up with me. If anybody is up for a grown up evening for one week only I could even get a babysitter or you could join Grandma and me for a night in. I’m deprived (also depraved) needy and willing!

On that sad, sad note I will sign off with the hope I will write again before the holiday diary starts because so far my blog plans for the year haven’t got off to the best of starts!

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

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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.