I’m in the midst of a flare.
More specifically the pain from nerve root damage in my back is uncontrolled. Driving me insane! Those of you who have been Pals for some time will know that this pain is usually tamed by my spinal cord stimulator – an implant that scrambles the pain signals to my brain – but this week there is a battle going on between my body, the stimulator and my head…..physical, psychological and emotional. The heat and humidity is ensuring that the other pains in my joints and soft tissues are also flaring and my autonomic nervous system has frankly gone haywire.
The changes in air pressure and temperature have always affected the metal skeleton that bolts the bottom of my bony spine together. This spinal fusion currently hurts – it hurts at the immediate vertebra level above the fusion (my EDS means the spine overextends even more due to the bones below being fixed); it hurts in the bones that have been cemented and screwed together with titanium nuts and bolts; it hurts in the surrounding muscles and soft tissues trying to hold the whole lot together. In fact as it starts to feel more stormy, I am certain that the titanium is about to break loose and rip through my skin, which feels like it is stretched tighter than a drum.
I feel that I should at least be able to use this time and be useful. Write, read, catch up – but the symptoms have a way of robbing that time and creating a thick pea souper of brain fog and fatigue. Concentration is poor and I seem to spend periods of time lying on the floor, unable to do anything – this post is taking hours to write.
I am irritable, stroppy, snapping at the family. My patience level is zero.
I feel that I let myself and others down as I crawl between the sofa and the floor and bed. I know that staying still is the worst thing to do, but is is tricky to keep up that physical exercise that we are told we must do when in the thick of a flare. There is so much advice out there for coping with flares and chronic pain, the majority well intended, but there is no one size fits all or one quick fix. We are all different.
I have made this flare worse! Wise? Probably not. Worth it? Definitely! Tuesday evening we attended Prize giving at the lovely girl’s school – she protested that I didn’t need to go, but I was determined I would see her mount the stage! It was hot, there were performances, there were presentations to the year groups, there were presentations and words about every girl leaving the sixth form, there was the guest speaker’s speech. Then there was yours truly sat in my wheelchair – slap bang in the middle of the front row! A perk of needing more space to accommodate your wheels, but a definite disadvantage for quietly creeping out. When the dodgy shoulder slipped out of socket and the neck and whole arm started to shake with spasm, I couldn’t even have a sneaky puff on my Medipen CBD vape – best birthday present ever!! (more of that in another post). Might have raised a few eyebrows!
It was tough sitting still for so long and I had the feeling that my head was too big and heavy for my neck to support – lollipop head, but the guest speaker, an old girl of the school, left a lasting impression. Currently a senior figure in one of the “Big Four” accounting organisations, she spoke to the students about achieving their potential in whatever they chose to do – she said that whilst she knew she would never be saving lives, making significant discoveries or winning a peace prize, she had tried to be the best version of herself.
“Be the best version of yourself” – isn’t this something worth striving for no matter our individual circumstances? I have been thinking this week that even with a chronic illness there still a best version of you and of me. It may not be the same version from 20 years ago, and it sure as hell isn’t the best version that I had envisaged, but isn’t that true for everyone? Circumstances change and so do we. The 18 year olds who released balloons from the drinks reception after the ceremony have their lives ahead of them – exciting futures that will mould them and change them.
I won’t lie – the best version of me has not been a pretty sight nor one I particularly like this week! But it is something that I will strive for, and if my semi-adult kids can learn from this and try to be the best version of themselves, then I can be happy.
I’m in the midst of a flare – but it will end!
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