The initial bleed on my brain the hospital had seen but down played was at the base of my brain. The blood pushed against and irritated my brain stem and spinal cord which controls the flow of messages between the brain and the rest of the body.
Together the brain and spinal cord form the body’s central nervous system. The brain makes the commands for the body to function, and the spinal cord delivers those messages to the body and from the body to the brain.
Branching off the spinal cord is the peripheral nervous system. These nerves are the finer detail, like what capillaries are to arteries.
These systems work together to enable the brain to control the body’s many complex functions. These fall into 3 major categories:
- Motor Functions – commands your body’s voluntary muscle movements e.g. walking.
- Sensory Functions – allows sensation of touch, pressure, temperature and pain to be communicated and analysed.
- Autonomic Functions – regulates digestion, urination, body temperature, heart rate, and dilation/contraction of blood vessels (blood pressure).
So although the bleed had stopped naturally, it still gave me a whole host of difficulties.
As I’ve already mentioned I struggled to walk and had poor coordination, so that fits into symptoms of Motor dysfunctions.
Then there was the fact that I constantly felt freezing (or as I kept complaining “Baltic!”)
No matter how warm it was or what I was wearing I felt cold. My friend and work colleague Kate, gave me a fleece lined onesie which I wore to bed as well as socks and slippers, and still I was frozen. In addition I had altered sensation down my left side. This means I still have constant tingling and my left struggles to identify sensations. So mostly it just registers pain, which I guess is a just in case to make me jump back as it might be harmful. Cold water feels like I’m being stabbed with a million knives. All these symptoms fall into Sensory dysfunction.
The most frightening and at the same time embarrassing, is Autonomic dysfunction. Whilst I was in hospital my blood pressure was all over the place. Previously I had always had lower than average blood pressure, but the hospital staff had to constantly monitor me as it would be sky high and then abnormally low. This is dangerous but luckily with their support it did level out over the coming days.
But my digestive system was struggling. I’m sure most people at some stage have endured the misery of constipation.
But after 6 days of being bed bound I still hadn’t been and was showing no sign of it being likely. After they had tried laxatives which failed, they resorted to an enema. For want of a better word, this is where fluids are pumped into the lower bowel via a tube up the bum. I can’t remember how long I had it attached to me, but it felt like forever. I actually don’t remember much about it but it must have worked eventually. However for months I continued to have problems with my digestive system.
Something in my nervous system was still trying to get the right messages to the right places. Essentially my bowel needed to relearn what to do.
Along side that though I now had an over active bladder. I had “key in the door syndrome”. Suddenly as each time I got home, I found I had to run to the toilet (made me wish we had a downstairs loo in our house). It wasn’t necessarily a lot, but there was no stopping it.
Or I would find minutes after being to the toilet I would need to go again. This was caused by my bladder not emptying properly. Again these basic functions of life were off kilter and it resulted in me feeling like I always needed to be near the loo. With the help from the gynaecology and physiotherapy department I was able to retrain my body, but again this took months.
Unfortunately none of this was explained before I was sent home after my accident. We probably didn’t ask the right questions and as I wasn’t self aware I wasn’t reporting my symptoms. But it would have helped if they had talked us through what we might expect. The doctors and nurses did a fantastic job at stabilising me and they work tirelessly for patients every day.
The NHS is amazing but the constant pressure it’s under to save lives meant in my case once I was no longer “critical” they felt they needed to focus on others who were.
Have you ever felt you should have been given more time or information? Should we except that staff haven’t got the resources or time?