So, to some people the fact that your head is attached to your body by billions of neurons, will not come as big news (for all of you budding brain surgeons out there).
For me the process of finding out was slow and painful.
Early in my 20’s seizure control and frequency took a big nosedive. I even developed a new type of seizure to complement the bigger ones ( a sort of 2 for the price of one offer). This was particularly frustrating because it happened after they tried new medication on me (Ruth the human guinea pig).
Like a lot of other guinea pigs (sorry,epileptics) who get to be cannon fodder for the pharmaceutical industry my consultant recommended the ‘latest’ drug to exchange for the old one.
The problem with the old one was that it wasn’t good for making babies, now it is not recommended as the drug of choice for women of child-bearing age.
The problem with the new one was that they didn’t have much history to go on what it could do, but they wanted to try it on as many people as possible to find out. That and the fact that as far as drug interaction is concerned it didn’t sit well in the body with the older drug. Unfortunately you can’t just stop one drug and take another. It is more of a weaning process.
After some years (yes YEARS) of taking the newer drug with the old one, and a deterioration in health, they tried another drug which also didn’t work. And then another drug, and another…
I got to experience some really special side effects. Who needs narcotics when you get double vision and tone-deaf from your anticonvulsants?
I had put on a lot of weight from taking the first drug. It wasn’t helped by the contraceptive pill.
Eventually, I realised that although I was exhausted I needed to try to lose weight.
I bought a fat burning diet book and looked for exercise classes.
The class I tried first was yoga.
I went to a Hatha yoga class.
It was a very big room, in a posh part of Cheltenham. The teacher was friendly and there were candles in the hall on the wooden floor. I wasn’t sure what to expect, but I wasn’t prepared for what happened.
The teacher took us through a couple of poses, and then for an extended amount of time we lay in ‘yoga nidra’ or ‘corpse pose’.
For people who have never taken the time to exercise or listen to their bodies I think ‘nidra pose’ (flat on the floor on your back) should come with a health warning.
In my case, all the things that were worrying me just flooded into my mind on the kind of volume you get at Wembley stadium or rock concerts. Anything that was happening in my life just marching through my head, despite the teacher doing guided meditation. I couldn’t concentrate on her there was a Glastonbury festival happening in my mind!
Frankly it was my worst nightmare.
And about as pleasant as having someone use my head as a football.
The problem with trying to listen to your body is that you may not want to hear what it has to say.
And so, I did not return to the Hatha yoga class.
Instead, I decided to try Ashtanga Vinyasa yoga.
The class was held in the small leisure centre on the doorstep of my work.
I didn’t know anything about it, but I was hoping that it would involve more moving around.
Well, it most certainly did involve moving around.
PHEW! I didn’t realise that Ashtanga was so athletic! There I was hadn’t done exercise for years and they seemed to be expecting us to jump around and stand on our heads! Upside down! I was having trouble with upright, leave alone inverted! It was a bit of a shock to the system, and at the time my head hurt so much that I just sat on the floor curled up in a ball with my hands over my head flatly refusing to even attempt to put any weight on it (advanced hedgehog pose). I suspect that this was a lot like how I was coping with life at the time. I would like to point out that this was a very well-instructed and safe beginners class, so I was not in any danger of hurting myself. It is interesting to note how I felt about my body as I was comparing myself to those around me quite a lot.
I must have got something from this experience (apart from sore legs), because I did persevere with the class as often as possible (about once every 2 weeks) during the course of a year. I either came out of it looking like I’d had a shower (the sweat I mean) or feeling like I’d been hit by a bus. Energetically Ashtanga was a bit ‘all or nothing’. After about 6 weeks, I noticed that although seizure wise my health was still pretty dire, I had a little bit more movement and flexibility. Years of seizures had not been good for flexibility.
I think that what led me to continue with it was that I found there wasn’t time to think when I was busy stretching into uncharted territories or wondering how my teacher managed to stay upside down without falling. There was a mini yoga nidra at the end, but there was more danger of me falling asleep than thinking after that kind of physical torture!
One day I had a seizure in front of my yoga teacher. It was actually a co-incidence that she was there at all. She was in the building to see someone where I worked. I was not really able to stand up and I was really out of it as far as being able to talk or communicate. I felt like the world was going away from me and my side was twitching as usual. It was a partial seizure. I could see the world in a very high contrast kind of stong light and dark way. A couple of people had come to my aid already but my yoga teacher assisted them to put me in recovery position.
It sounds very strange, and a bit clichéd but what she said when she was holding me safe has probably changed the course of the rest of my life.
She said’ Breathe Ruth, breathe’.
I can’t say I stopped fitting. I don’t think my breathing changed either, but something happened deep down inside, much later on, it was as if a part of me heard her and didn’t forget.
I had been having seizures for years, but had never noticed my breathing before. I had never been aware that I wasn’t breathing properly during partial seizures. No-one had ever told me to breathe before.
Years and years later, one of my best friends told my other friend she had realised I was having a seizure because my breathing changed (sometimes they don’t notice if I’ve gone floating off into space – it’s harder to spot than falling over) she was sitting at my side so she couldn’t see me from the front.
Breathing is really important! So important that if you don’t do it your heart stops! No heartbeat! No brain squiggle! No Ruth! This really shouldn’t come as a revelation!
It sounds really obvious but I had never been aware of my breathing before.
1)http://www.epilepsy.org.uk/info/seizures/focal-partial for more information on partial seizures.