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.

 

 

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!