Day six – It’s all about the spoons

So it’s been a long and tough day, my activity levels where a little less than I ‘normal day’ whatever the heck that is but it was a dial up from my quieted down levels since the bite of the reduction programme started. I am now tired and sore, I had hoped I may have been able to make a 10mg Oxycontin reduction on my daily totals by skipping one of my breakthrough doses but it was not to be. I had my turn of feeding the riding school this morning, that would normally be combined with mucking out the paddocks as well but I had help from the kids and others so was not as much as normal, still hard and some jobs I couldn’t do (shifting bales of hay!) but I will take the victory. The kids should have ridden today but since neither was desperate to do so due to weather I didn’t see the point in pushing myself any harder, instead the Girl indulged in her favorite part of pony care, the playing with the hair like a giant My Little Pony®. After the Pony had his shampoo and set (no, really) we headed home for me to collapse in heap. The only things left in me where two simple meals and reading 3 chapters aloud (why does Michael Morpurgo write so emotively, all his books have me crying beginning to end?) to the Girl (and Boy by proxy, don’t think he was listening though, more intent on not making the same Minecraft farming mistakes as yesterday). The blog tonight, like every night is brought to you courtesy of 50mg of Oxycontin (split 40mg slow and 10mg quick) and 150mg of Pregabalin (more on Pregabalin on another day).

/begin Chronic Pain lesson of the day

Todays lesson is going to be about Physio, controlled physical activity and Spoon theory. The most important bit is Spoon Theory, it dominates everything else both on the list and in life. I am going to direct you to the best explanation of what we call pacing through this link right here – click here – please, please read this. It is written by somebody with Lupus BUT it is the core to understanding what it is to live with Chronic Pain and the best way for a layperson to understand what it is to live with a chronic pain causing, energy sapping condition. Spoon Theory is everything and if you want to understand what it is to live with Chronic Pain you MUST read it. I simply can not stress this enough, both Boy and Girl have learnt how my condition affects me from Spoon Theory and on bad days they are counting out and managing those spoons right along with me, using their own for me when needed and understanding why sacrifices have to be made.

The physio and controlled physical activity sit right on in there within spoon theory so I am not going to say too much (haha, not much!!), most of it is self evident common sense anyway. When you smash your bones either into dust that can’t be put back together or break them in so many places at once your x-rays look like a meccano space shuttle launch pad there is only so much healing that can be done because the issue isn’t the bones that you broke they mend fast, can be crafted by cleaver surgeons and mend strongly. No, the problem is soft tissue, it is the muscles, the ligaments, the joint capsules, bloody supply, nerves and all of the other wonders of the body the skeleton supports. These things are much harder to fix, take longer to heal and even with the best medical care in the world, will never ever be as good as new. Sadly these are also the part that hurt, you don’t feel your bones after all! Both my ankles are permanently swollen and in my right (the shattered one with half the talus bone) I have approximately 70% range of motion and in my mecano left it is more like 50% average (some movements are worse that others, up down isn’t too bad but left right is appalling). To keep from losing more of that range there is the daily physio, this involves among other things lots of flexing, rotating, and using a strip of special rubber for resistance. I also have developed over the last year a lot of pain in other joints. My hands are the worst just now and it is likely to be arthritis. This is kind of to be expected with me in regards to my ankles (but my hands are just typical me, got to go one up). Doctors can’t quite believe how little my ankle joints suffer with this, with the first shatter (right leg) aged 18, doctors at first told me I would never walk unaided again but a year in twice weekly ‘ankle class’ at the fabulous Royal Liverpool Hospital physio department and maintaining the daily routines they drilled into me ever since, I have thankfully proved that grim prediction wrong. It was and still is hard proving them wrong but I am still at it, once I managed to ditch the (horrible, rigid, sweaty, tights ruining, velcro strapped, and barrier to riding horses again) plastic ankle splint and then the walking stick they told me I would have it all back by 30 with arthritis. Just to show my medical history isn’t all doom and gloom, I even doubled down on the predictions by breaking the other leg at 33!

So physio is ever present, there are a lot of set exercises I do but also maintaining an active lifestyle plays a part on the physio, almost ironically one activity that provides good ankle physio is riding horses, it’s a twisted world. General physical activity helps me keep everything moving, yes I have to power through pain but I have to keep reminding myself that apart from the ankles and abdominal internal scarring (where too much pain should not be powered through) my brand of Chronic Pain is a false flag operation from my nervous system. It tells me there is a big problem, something is wrong and it hurts bad but there is really nothing physically wrong, it is the scrambled messages that tell my brain for example, that my arm is broken, all the pain and no cool cast for signing. Stopping is the worst thing I can do to myself because starting again takes months of work and much more pain.

The balance brings us back to Spoon Theory so I am going to double down on that and post another Spoon Theory link I recommend reading that to… yes it is that big of a deal! Spoon Theory . I am popping in to edit this to say please do read this link even if you read the first one as this link is so very, very relevant to me and my experiences.

/end lesson 

So another day is done and another notch along the road to being opioid free.

Tomorrow is the Boys pick for half term activity so we are off ice skating (this could and should strike fear in your hearts).We had our annual Brownie skating trip a couple of weeks ago and the Boy made it round two laps, a big achievement given he was terrified of getting on the ice but wanted to conquer his fear as last year he only made it from one entry point to the next, about 10ft before the fear got the better of him. The Boy is so rightly proud of himself that he wants to go and try and do even better. He is a pretty awesome little lad.

 

 

 

 

 

Day Four – An okay day

So all in all good news for day four of the reduction programme and day one of half term. Must be a blue moon!

So again, a rougher start to the day but once movement had started it went well, the things I wanted to do got done and I found I was not clock watching for the last two medication doses (not just the Oxycontin but my other drugs also – more on that another time). I can’t really ask for more than that any time let alone in the first stage of opioid reduction. I also found I was much less snappy today.

So I am going back to the morning for todays Chronic Pain lesson. This one is more specific to me than just the general Chronic Pain issues that the majority of ‘Painers’ experience so while there will be aspects that other Painers will identify with the mechanisms are around my personal medical history and the effects on daily life.

 

Lesson begins (like Batman only bizarrely less depressing somehow):

Mornings are tough for me due to in a large part the fact I have yet to learn I am not a cat. I have talked about my 2012 left leg breakages over here and then I also shattered my right ankle losing half the talus bone back in 1996 both the result of falling from horses (because I’m a dolt) and landing on my feet (because I am not, never have been, never will be a gymnast, nobody told my instincts that though). Neither of these injuries are the reason I have Chronic Pain but unfortunately due to the F.U.B.A.R nature of my central nervous system both have significant impact on my day to day pain levels. I sleep with my legs elevated to combat swelling but getting my ankles up to operating speed takes a bit of time and a bunch of drugs. Now we are throttling back on the opioid components of that bunch I am finding getting my legs working even harder.

once I have got my ankles to the point of being able to weightbear we have the ever tricky balance issue. I fall over quite a bit. I manage much better these days especially given a decade ago I needed to use two crutches to get about and for longer trips a wheelchair this improvement is due in a large part to a pretty full on physio routine and managing my physical activities to maintain strength. The absolute worst thing I can do to myself is stop being active just because it hurts and I wobble (more on the physical activity component to pain management in a future lesson).

I tend to find though once I am on my feet and start to move around things settle out into the manageable levels and the more careful time I spend on my feet the better set up for the day I am. On school days unless I have to leave the village straight after I drop off the children I will walk to school as that light exercise loosens everything up fairly well. I have been finding in these first few days of reduction I am taking far, far longer to get to this point and the general pain levels are higher, but, I am glad to report, not unmanageable.

In future lessons I will talk more about the issues with my limbs around both lack of sensation mixed in with hyper sensation and then also my ‘primary’ pain site, the place where it all began, my upper right quadrant abdominal area, or laymans terms, that bit over the liver.

/self centered lesson ends

 

So now let us segway over to the Boy and his hair cut. See how smooth I am in my writing, flawless!

So five minutes after the boy was sat in the chair and his hair cut had begun I remembered my promise of a before and after picture. I would like to blame the drugs but that’s just me being a forgetful twit, apologies. You aren’t missing out on too much as there is not a drastic change with the Boy’s hair as we finally got a hairdresser who didn’t decide to disregard the Boy’s wish to keep as much length as possible so the end result is a much tidier cut that is neither bowl or mullet and doesn’t have a ‘notch’ where the cut around his ear once was. I don’t think you can tell a huge amount from this picture, I very nearly forgot to take this one as well and had to call the Boy back after he had started up to bed. He then could not keep himself from falling about laughing for some reason. I think these two pictures are just so cute and him though, I am a bias source however!

 

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.’

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.