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.
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.