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 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.

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.

Death of a dream

Day 15

So here it is, the final weekday of the Christmas holidays. This is the only school holiday of the year that I get to this point and I am not ready to show up at the school gates at 6am on Monday morning. It is the one holiday when I find myself thinking that maybe another week would be nice. It is the fact that there is never a clear week of the holiday when there isn’t an ‘event’ and associated public holiday. This wistfulness only lasts as long as the break between sibling arguments mind so never gets enough time to form into anything like yearning or a resolve for change, I see this as natures inbuilt self protection and I am grateful for it.

Once the children got home from their Fathers in the middle of the day we set out to first get the boy the haircut and then with plans to go into Oxford to find the 1 billion pound shop.

Clearly enough time for thought had passed to build a deep yearning for that 1 billion pound shop the boy had assured me lay waiting in Oxford because not once, but twice I completely ignored the fact our first stop was the local town for hair cutting and bill paying. After the first time I merrily ignored the turning for town and had then navigated myself back onto the correct route I suddenly realised why the boy had been repeating again and again that ‘This is the way to my doctors!’ from the back of the car. That was because I had yet again strayed from my path to the town and was heading off towards Oxford again.

I finally managed to block to lure to Oxford long enough to get us into town and after a spot of the boring task of paying bills we found ourselves waiting our turn at the hairdresser and I found myself yet again having to bargain with the boy that while Bieber hair may look cool to him he did need to be able to see past his fringe. We finally hit a compromise in which there where to be no clippers, the hair at the top could stay reasonably long but I would be able to see both eyes and ears at all times. The boy is happy with the results but has insisted gel shall be needed for the next school disco so he can perfect the ‘bed head’ style. Thankfully we have a whole term until that point and as he has a memory to rival my own I am hoping that if nobody says the words ‘Justin Bieber’ between now and that point I might just get away with it.

Next stop was to give in to the force dragging me into Oxford. Hitting traffic seduced us into giving the park and ride a try. It was a cruel lie. As soon as we where committed to the park and ride I could see that the traffic jam had completely vanished. The children at that point where full of the kind of enthusiasm for public transport only the under 10’s can have so there was no easy way out. I have become convinced that the traffic lights on that junction are set up as to make you think it is bumper to bumper traffic all the way into the city what ever the real situation may be just to trick you into using the park and ride.

On the bus ride the boy was as normal questioning me intensely on the lives and loves of every animal, mineral, vegetable that his eyes fell upon. He is of the unshakable opinion that I should know all and every detail about anything or anyone that his eyes fall upon and is only just starting to accept that outside the village I don’t always have all the answers. This resulted in my strangest moment of the day. The boy was questioning me about some people he could see from the bus window, when I was not able to satisfactorily answer the questions the boy pondered, ‘Maybe they are in mourning’. Oh. okay. Where did that come from? The boy has an expressive language disorder but he does love to throw some stuff out there just to keep everybody involved with him on the ball.

We couldn’t find the 1 billion pound shop. The girl found plenty of shops with pretty dresses and jackets. The boy found shops with superman braces and ties. I had to settle for a new bath mat and some towels. I’m very disappointed and in mourning for the loss of my happy hour browsing the shelves of the 1 billion pound shop.

About that boy…

Day 14

This morning was the morning of interesting conversations with the boy. He stated that his selection box was not chocolate. Intrigued I asked him what it was,

‘It’s wheat, all of it, even the flake’ he informed me like I was crazy to even ask

‘How do you know it’s wheat?’ I said picking just one question of the very many possible

‘The manager says so’ he replied quickly and calmly

‘Oh, who’s the manager?’ I enquired

‘I am. I am the manager’ he stated with absolute authority. Okay. Well that settles that. Wheat buttons anyone? Maybe dairy wheat bar?

The next conversation of note I have to admit that I can’t quite remember what sparked. It was about somebody having something new. I can’t remember who or what the new item was other that it was something rather large, somewhere between a house and car.

‘Did it come from the pound shop?’ he asked and on hearing my negative he moved on to

‘Did it come from the 99p shop?’ again my response was negative and I indicated that it probably cost a little more than that so the boy upped his game

‘Did it come from the 1 billion pound shop?’ he asked getting quite excited now. I told him that I didn’t think there was a 1 billion pound shop

‘There is a 1 billion pound shop! It’s in Oxford.’ again this was stated with such authority as to end the conversation. There was simply no more to be said, the hammer was down and the matter closed. We are planning on going into Oxford tomorrow, I would quite like a quick browse in the 1 billion pound shop. I hope it isn’t like Diagon Alley and hidden from the window shopping oiks like myself.

I have a strange and creeping notion that the boy is growing up to become an evil genius and is already planning his secret lair and recruiting henchmen and minions. The girl is defiantly on the pay roll. He probably pays in wheat bars.

In other news, tomorrow afternoon we are off to get the boy a hair cut. He has strongly maintained his desire for Justin Bieber hair. I am starting to wonder if this comes under the ‘within reason’ clause of my stance on the children’s hair, that they get to chose the style and cut given it is their hair not mine. I guess we’ll just have to wait and see if I manage to brave walking into a hairdresser and making that request, maybe I could make a new clause that they have to tell the hairdresser themselves and I can pretend that they aren’t mine?