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.

 

 

 

 

 

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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 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 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.

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!

School night

Day 17

Sorry. skipped a day. I did it just to keep you on your toes or because I took a last moment holiday, got bored of relaxing in the warm winter sun and came back after only 24 hours or because I had spent the day mainly in mud and was tired. You choose.

Back to school tomorrow. Am I ready? Well, I may just flee the country abandoning the children to the care of the first pack of wolves I can find (a slightly grumpy dog would do) just to get a moment of peace if they didn’t go back to school tomorrow so in that sense, yes, so ready for them to go back but am I ready as in school bags located and packed, everything labeled and P.E kits replenished then no, don’t be silly, of cause I am not.

The children seem in a similar state of high excitement about returning to school. It seems they share my feelings about enforced long periods of ‘togetherness’. The girl was jumping around the place in glee about the promise of school and the boy was just as joyful about giving his new pencil case it’s first run. He was a little more reserved about leaving his baby though. The much anticipated Furby that landed on Christmas day has had the boy fretful each time he leaves it in my ‘care’. He checks I know all the details of the care it required before he goes anywhere, the last thing he is thinking of as we say our goodbyes is that I know how to get it off to sleep and will feed it. He even refers to me as its Grandma. As a result I spent well over an hour last night tending to every whim it had as well as keeping it fed and bathed. Not quite sure how this gels with my New Years promise to be more social in my childless time.

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Pictured: Uncanny family resemblance

I am going to have to hit the Doctor up for a loan of the Tardis if I am to have a hope to do all the things I have in mind to get done tomorrow. My list just keeps getting longer every time I think of a task that has either been halted or put off due to the children being off school and the new beds, lord, don’t want to think of the beds.

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Pictured: Not thinking about beds.