I've had to be absent again and you'll never guess why...
It was long scary story this time.
Sadly this all occurred when I was supposed to be spending some much anticipated time with my sister and niece both of whom I hadn't seen in months. I finally after only recently being in hospital previous to this admission took the 200 mile journey to visit them. I was there for a total of 3 days before the first big seizure hit. It was a Tonic-Clonic that sent me falling backwards leaving me with a nasty bang to the back of my head. This has happened plenty of times before but this time I didn't recover quite at my normal rate. My sisters partner was at work and on-call as a firefighter so given that my niece has only just turned one I didn't want to leave my sister with the responsibility of me as well. I phoned the NHS helpline for some quick advice as to whether to get checked out or not and without hesitation they told me they would send an ambulance. Now, looking back I should have agreed to this but instead I told them I would make my way to the minor injuries unit to be checked over to be on the safe side instead of troubling an ambulance. The three of us made our way to the tiny hospital which luckily was just down the road. Once there I was immediately checked over and had my observations taken which unfortunately were not brilliant so low and behold they called an ambulance to transport me to the much larger county hospital. I am so lucky they did as en route to the hospital I drifted off to sleep and fell into my first of many clusters of seizures. I was totally unaware of this until being woken up and told what was happening but luckily I was able to come out of the cluster without medical intervention but from past experience (this cycle has happened 3 times before in the four years I've lived with Epilepsy) this wouldn't be the case for long. After a long day and some complications that I will have to omit due to negativity on the hospitals part I was discharged from hospital number 2. BIG MISTAKE.
Unfortunately and for the life of me I will never be able to understand why, because I was in a hospital in which I am not a regular patient, my hospital records couldn't be accessed and despite putting up a desperate fight they failed to understand that the clustering of seizures every time I slept was NOT normal for me.
The next morning after seizing through the night we went to the local GP surgery to ask for an emergency prescription for me to get some more medicine as I was fast running out of my normal rescue medicine Clobazam in an attempt to stop the cycle myself. Because this is a controlled drug I was taken in to see the GP in person which turned out to be a God send. My sister and I explained what had been happening and despite the fact that I was now incredibly exhausted from seizing I was refusing to go to sleep as I was afraid of the approaching seizures. Thankfully my sister has also taken some video recordings of me seizing in the previous hospital the day before and showed the doctor. She was shocked and explained that I needed to go to the nearest neurology specialist hospital. So this is exactly what we did.
The doctor had rang ahead to say we would be coming and so I thankfully got to skip Accident and Emergency and go straight through to the Emergency Care Unit. It was incredibly busy and as usual nowadays for the poor NHS severely understaffed. I had tests done though which showed abnormalities including weakness down my right side and a distinct lack of coordination in my upper limbs. Not good. They set me up in a cubicle hooked up to a monitor and finally I felt safe enough to sleep. Exhausted it didn't take long and as soon as I was asleep the cluster started up again. They tried me on my regular rescue medicine again to see if it would make a difference but unfortunately it wasn't to be. I was transferred onto a ward and hooked up to my own SATS monitor that would alarm every time my oxygen levels dropped to low and alert the staff. The next few nights the cycle continued getting worse as time went on with my seizures coming more frequently and for longer and by now not stopping without medical help. I was given rectal Diazepam which thankfully aborted the cluster temporarily for the first couple of nights which meant I was getting a decent sleep after the seizures had stopped. I had to have the Diazepam for a few nights and eventually the cycle was broken and I got almost a whole nights sleep without any seizures. Just two minor ones but given I was exhausted, boiling hot and stressed.. that's nothing short of a miracle.
It is very hard to get my head around the fact I could fall asleep with just a small SATS monitor on my wrist and finger and wake up connected to many monitors and oxygen masks pushing oxygen into my body to make up for the lows during seizures. There would be pillows and blankets that had been placed next to me in the night while I was seizing to stop me hurting myself on the metal bed rails. Each morning the overnight nurse would come along and explain what had happened during the night and show me my seizures chart full of scribbled doctors writing noting seizure after seizure and yet I would be totally unaware. Exhausted, sore and miserable of course but to see the number physically written on paper is strange. I can't thank the staff particularly the nurses enough for their kindness, understanding and support. My sister for putting up a good fight for me and my mum for making the long journey to visit me and bring me lovely new pyjamas for my stay. Plus I had a cracking view over Oxford from my bed :)
Five days after admission I was discharged with strict doctors orders to keep cool, not travel too far, not do anything over strenuous etc. My mum came to collect me and we visited my sister and niece to say goodbye before we travelled back to her house. I stayed the night there to take a break from travelling then my dad came to collect me to take me the rest for the way home.
Phew, long story over for now! Stay well xxx
