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.

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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

Pony Nuts

It felt like a twisted game show this morning.

‘You have 18 horses that need to see the farrier. Some need trims, some need 2 shoes, some need 4, we aren’t going to tell you which ones are which and they are all covered in mud. You have 2 hours to complete the task while also feeding and mucking 20 horses, you must work at least 1 and you must do all this while trying to avoid the mad evangelist owner and being called away from your task every five minutes to sort out somebody else’s errors… GO!’

But that is horses, that in particular is riding schools. Every riding school must be owned by somebody who hatters step away from politely. It is quite reasonable when you think about what is involved in owning a riding school, you have to have fallen on your head too many times to even consider working with horses so owning a riding school breeds its own kind of crackers. This one is interesting though, it is the first (and hopefully only) time I have ever had to explain to customers about the check box you need to tick if you don’t wish your child to have lessons in ‘Evangelical horsemanship’. It was before my time there but apparently the tick box came about after a parent arrived early for pony day pick up and found their offspring locked in the owners house being preached to about how God would best like them to ride a horse.

I have without doubt fallen on my head too many times, I have also landed on my feet too many times, well at least two more times than is healthy given I now have a bad leg (half of my talus bone in the ankle was removed as the ‘pieces were too small to pin’) and a worse leg (broken in three places and held together with more Meccano then was in my first set). Yet still I have chosen to work with horses and can be heard saying it is the best job in the world while sober.

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Pictured: Best job in the world…

All horse people are crazy people, you have to be. No sane person would spend all their hard earned money for the right to stand in freezing rain with mud up to the arm pits picking up poo and call it a hobby. Just getting on the back of an animal that could kill you by accident is mad enough when you think about it but then you take into account that time on the back of the animal is tiny compared with the slog of looking after the animal and if you are not horsey folk you can’t fathom why on earth anybody does it. This time of year even the horsey folk can’t understand why they do it most of the time and then you get the likes of me, I don’t even ride at the moment (what with the landing on my feet habit still going strong), yes it’s my ‘job’ but there are far warmer things I could be doing and there is absolutely no money in horses (the horses eat it all) so that leads us back to the ‘horse people are barking (should it really be neighing?)’ observation.

It is usually around now I will say something like ‘to get back to the point’ but I am not sure there ever was much of a discernible point, much like horses really.

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Pictured: The reason horse folk do it

I am working on a fiction project that will hopefully be something along the lines of ‘Mum meets apocalypse’ diaries. I have a huge soft spot for dystopian apocalyptic/post apocalyptic fiction and wanted to try and do a little bit more without straying too far from my comfort zone. It isn’t going to be something I can write in a few hours mind, not if it’s going to be any good and have an arc anyway so I suppose this post is mainly filler! We will have the normal school holiday diary coming up very soon as well. My life is a little complicated to say the least just at the moment with me still trying to find my feet and adjust to life as a single Mum and in turn some topics I have placed for my own and children’s protection as ‘out of bounds’ unfortunately the last few days have been very heavy on the ‘out of bounds’ topics, more normal service will hopefully resume shortly.

Living in the real world

(Fiction – thank you for the inspiration Mum, I bet you are glad you managed to get out without outside help!)

Do you ever feel like screaming ’Stop the ride I want to get off!’ before realising that the ride you are on is called life and the ride operator is so rarely seen that they have become legend. The little booth that he sits in has been nicknamed heaven but the windows are tinted and you start to wonder if there is anybody operating the ride at all.

The school run that morning had been one of the usual affairs that saw me thanking the ride operator for the fact that my sleepwear can pass for outerwear from a distance, while covered with a winter coat and as long as all the other unfortunates on the school run conformed to the rule of not looking too closely at each others attire. So with the boy and girl deposited for the day I dashed back home and into the welcome embrace of a bubblebath and it was then in a moment of weakness brought on, I think, by the hot water I foolishly allowed myself to believe that may day was getting better.

Wearing nothing but my middle age and a bathrobe I made my way in search of my hairdryer, last seen on Monday morning when it had been involved in an attempt to coverup the fact I had forgotten to turn the tumble dryer on the night before.

I found myself in the lesser visited corner of the small utility room that adjoined the kitchen thinking that I may have chucked the hairdryer onto the shelves above the hot water tank along with the towels that had also proven useless in my jumper rescue attempts. I looked for some reason at the hot water tank before the shelves, just as I was thinking that I could have sworn the tank was taller the last time I had looked at it I also noted a sudden lack of floor under my feet and then like Road Runner, a fraction of a second after the removal of solid ground, I began to fall.

A small part of my being had at least some wits left about it and just at the crucial moment my elbows shot out and managed to arrest my fall. I hung there, my weight held by my chicken wings for a moment or two while my brain processed what the hell had happened. I found myself looking directly at the suspiciously squat water tank while the cogs turned and I realised that. like I, the water tank had gone through the floor. Without arms to catch it the tank had been lucky enough to only fall part way before being caught by the joists. How at that moment I wished I was the water tank because it was about then that I realised that my bottom half was feeling rather draughty and the terrible reality that I was hanging with my top half in the utility room, my elbows stopping me from falling all the way through to the flat below, my dressing gown gathered up around my armpits and my lower half, now exposed in all its glory protruding into the downstairs flat.

Ten long minutes passed while I tried to find a solution to the rather interesting position I found myself in. Well, it felt like about ten minutes, I had no way of really knowing given that I foolishly never saw the need to mount a clock on the water tank and my phone was not about my person. I was trying to find a solution to my predicament when I heard the sound of a 20 year old male pure maths student discovering what a 30 something mother of two looked like naked from just above the waist and hanging from their ceiling. It wasn’t a pretty sound as such, more of a high-pitched scream, a pause to take in the full wonder of the sight before him followed by a string of expletives, a bit of cursing the ride operator and finally a call enquiring about my well being.

The key for my flat that I had cut to give to the neighbours was naturally sitting on the shelf in my hallway waiting patiently for me to give it to them. It had been waiting for over 6 months at that point, it had taken me 2 months to remember to get the thing cut and it was now only a month or so before they moved out ready for the new students in September.

As there were also no ladders to be had other than the ones in the garden shed (the key for which was keeping the spare flat key company on the shelf) my newly traumatised in ways his counsellor wouldn’t believe neighbour called the fire service.

Two fire engines one police cars and one ambulance was the final tally. They got me down into my neighbour’s flat quite quickly but that is to be expected really when you consider that my rescue crew was 16 firefighters, 2 police officers, 2 ambulance crew and a student doctor on a ride along.

The only real damage it transpired once I had been checked over by the ambulance staff was to my floor, my dignity and the mind of my young neighbour. Soon the emergency services started to drift off ready to dine out on my experience for many years to come, thankfully I realised before the last firefighter left that I was still not in the correct flat and that there was not a key for my flat in existence that wasn’t on that bloody shelf mocking me. The police officers and the remaining firefighters had a small standoff when it came to which one of the two services would get to use the small battering ram. I had to step in and play Mum after a few minutes as by this point I just wanted to put on some clothes and try to get a little time to sort out the gaping hole in my floor before the children came home from school. I ruled that the fire service had their turn when they got me down from my perch and it was the turn of the police now. The last firefighters appeared to be sulking as they got in their truck and departed and the two police officers could be heard at the top of the stairs outside my front door having a small tussle over who was going to break the door down. I trudged up the stairs, told the police officers that if they couldn’t agree I would do it at which point they seemed to snap to their senses, realise that they were police officers not children and broke down my front door.

It was less than two hours later when I left to pick the children up from school, now at least, dressed in proper clothes I didn’t bother picking up any of the keys from the shelf in the hall, there didn’t seem much point anymore.

A dog ate my blogging

Yes, yes, I know.

I said I know.

There is really no need to keep harping on about it.

I am sorry about the silence that has thundered from these pages this week. There has been a lot of life. Some of it fun but most of it mundane and boring and unfortunately some of it is heartbreaking.

The fun is always in what the children bring, always fresh, always enjoyable, always strange and baffling.

The mundane and boring a ranging from school meetings about the boy and his troubles (He is doing good, although I do think that if something isn’t directly effecting his academic achievement the school does glass over things somewhat.) to mucking out the house ready for a letting agent visit (random fact, I keep stable yards spotless, hate a job not done, love order and tidiness and would rather die than leave a yard untidy. I keep my home however, more akin to a muck heap, jobs will always wait until the mythical ‘later’ and I just can’t bring myself to care too much about cobwebs.).

The heartbreaking is heartbreaking. I am hundreds of miles from my family but the Appleton folks have always been a great big surrogate family to me, looked out for me, looked after me, they are a special kind of family. In the last two weeks the bottom dropped out the lady I see as my Appleton Mum’s world. Her husband became suddenly ill, then sicker and now he will not see Christmas. From the news in the last three days, if he makes it to next week he is doing well. Their story is not mine to tell and I am doing as much as I can for them (not enough, can never be enough) but finding the funny is a little harder just now and I may need to drop everything some more to take up as much slack as I am able to and this kind of thing can often leave me too tired to write, even when it is all there just begging to fall onto the page so stick with me, I will write when I can. I can’t promise it will be any good though.