Uncertainty is a difficult thing to master. Fear always is when faith is tested. And with a chronic pain condition, uncertainty comes in to play a lot. Especially recently.
No one likes change, especially when it is forced upon them. Being thrown in to unchartered territory because pain has dictated so, brings a mass of temptation to worry about the consequences of a damaging physical condition. Life is getting difficult.
I am having to constantly adapt to doing less. And with so much energy, finding a balance of what I can do, whilst listening to what my body needs and knowing what I can’t do isn’t easy. In fact it’s depressing to be backed into slowing down all the time.
Yet to fight the temptation to push through the day physically, which is what I am used to doing, is useless. I cannot beat the pain. Its hard lesson to be learning – and I’m learning the hard way.
The last couple of weeks i have been heavily dictated to by a damaged central nervous system. Which is worsening despite the tools I have picked up at the pain clinic.
There have been three big head flare ups over the last week which have had me on the edge of insanity. Sat up through the night, pacing around downstairs trying to distract with music. Trying cold compresses and settling for Frankie’s hot water bottle tied to my head with my dressing gown chord. With nothing really relieving the hot electric currents.
I have also had three spells of collapsing with dizziness. Drained of energy and unable to move, sounding slurred with my speech and losing consciousness. The hospital have pointed me back to neurology. With nothing visibly wrong with my vitals, accident and emergency are at a loss with me. I concern about my job. Today was the second episode whist working a morning shift. I was then taken in an ambulance for tests and pain relief.
On the 10th March I have a brain injury assessment. With all my symptoms pointing towards it as a cause for my worsening condition, I am hoping for answers. Central pain syndrome usually has a cause. It’s been established I have damaged pathways in my brain, brainstem and spinal cord. Perhaps a clear diagnosis of a traumatic brain injury would lead me to the right support and rehabilitation. Because being in limbo, with all this uncertainty is taking its toll.
It’s not natural to have electrical shock pain so close to the brain. It’s draining me and I am running out of mental steam and positivity around moving forward with acceptance. I thank God my wife is standing by me as investigations continue.
But for tonight I have the pink hot water bottle and a dressing gown chord. And perhaps il wake up feeling more like a man ready for battle. Because giving in isn’t an option. No matter how relentless pain is.