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?


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.’