Down and out…………….or dust yourself off and go again……………….

I don’t like moaning so I apologise for this now, if you don’t want to read on I will not be offended.

I am currently in a setback period of my chronic pain and have been for the last 8 months, life for my family is changing rapidly and with no end in sight lifestyle changes are being made on an almost daily basis (little things like toilet frames) and they have come to a head for me this past week.

I have been working hard using all parts of my Chronic Pain Jigsaw (I should probably blog in greater detail about this sooner rather than later) to try and combat this setback and get on to some sort of even keel (my condition is degenerative and outside of my control as to the rate of this, however there are obviously things I can do to help with this) and back to me controlling my pain as opposed to my pain controlling me and dictating what I can do.

One thing I have been working on is trying to ensure the meds I am taking are effective in combating the pain and that all their side effects are counterbalanced by the relief they give. Thus far this has been largely unsuccessful with any reductions made massively increasing pain to the point of being able to do nothing. This means that the side effects of forgetfulness, a muddled mind, mood swings, bowel movements, increased appetite and insomnia to name a few, are, unbelievably the better choice as at least I get up and showered.

Anyway here we get to the crux of my moan, despite trying all this and combining a number of other elements of the Jigsaw (mindfulness, exercise, friends & family, physio to name a few) I have seen no improvement in months and actually this last week I’ve gone backwards. The additional pain I’ve been experiencing the last few days came to a head as I couldn’t do anything so I spoke to a GP, she thinks that my increased pain has been caused by a spasm that hasn’t settled and the best way to combat that is to increase one of my meds and potentially introduce another one. Anyone in Norfolk yesterday afternoon probably heard my anguished groans after she delivered the news that I knew was coming but that I had been delaying in hearing.

So now we arrive at another one of the many crossroads that a spoonie faces, take the advice and suffer the increased side effects; the feeling of not being with it in the morning until midday, the looking at a situation from up high as you don’t feel in control of your own body or the increased pain making doing anything unbearably painful and becoming a recluse until pain passes and mood improves. It is very difficult to keep picking yourself up, dusting yourself off and taking on new challenges when you are already exhausted. Having the right support around you helps, having family and friends that get what life like a spoonie is like is good and I have this, and further than that I have a way to vent, and a group of spoonies to confide some of those really ‘dark’ thoughts with who get it and can help pick you up. None of which I would have had, had it not been for the Pain Management Programme that I attended with the specialist chronic pain team at West Norwich Hospital. So dust myself down I will, it will just take a few days to this and along with the help and support of people who mean the world to me I will, to coin a Katy Perry song that my LG loves “ROARRRRRRRRRRRRRRR”

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