I have been busy of late. I now have a job coach (through HertsMindNetwork) for people with disabilities. He’s helping me reinvent myself as a freelance writer and together we have created a separate website with a portfolio of all my writing work – sharonrosswrites.com. He’s also funded me to go on some courses. One of them was called ‘Writing for pleasure and profit’ – the tutor was amazing and said that to get an article published all you have to do was pitch your idea to an editor in a couple of sentences and then say a couple of sentences about yourself. I had, for some time been thinking about writing an article about a Jewish approach to mental health but the course really gave me the impetus and confidence to share my ideas. I wrote an email to the Jewish Chronicle pitching my idea and hey presto a few weeks later ‘How Judaism could do more to acknowledge mental health’ was published. I’ve also gone on a course about how to get a book published through an agent (ie not self-publishing) in the hope that one day I can publish this blog. The conclusion of the course – writing a book is one task but getting a book published is a quite separate activity that takes a lot of hard work and even if you do get published you probably won’t be able to earn a living from it.
I’ve also found someone who is trying to help me organise myself and my family. To be honest, it seems like a lost cause. I now have a laminated meal planner on my kitchen cupboard with pictures of all the meals that we are supposed to eat on each day of the week – but I never ‘see’ the planner. I know theoretically it is there, but I just am not aware of it when I’m standing in the kitchen trying to work out what we should have for dinner. Nevertheless, the two of us are persevering, in the hope that we find one strategy that will make a difference.
It’s also been the summer holidays and I’ve had three growing children to occupy. We’ve got through it and that is some sort of achievement. Still with all this and making bespoke meals for myself every day on the ketogenic diet (I celebrate my one year on the diet in a couple of weeks!), and with the up and coming Jewish festival season, I don’t feel busy. After analyzing what other people say they think about when they feel busy I have concluded that feeling busy involves proactively thinking ahead at the tasks that you need to do to achieve your goals; problem solving when difficulties arise; breaking down large tasks into smaller ones and also getting anxious as to whether you can meet your targets. But I live I live in a fog. I don’t think these things – I just do exactly what I need to do when I need to do it and I get stuff done. Although, some people crave for a world with little anxiety, in practice it’s no fun at all. However, despite my internal lack of busy thoughts I do realise that slowly, slowly I am making progress. My life is somehow moving on.
On the medical front things are also moving forward – although not in the direction that I expected. I tried the CBD oil for three months (in the end not from the naturopath but from a well-known brand that has a reputation for treating epilepsy). I had not noticed any differences in my cognitive function but I was still hopeful. ‘What if,’ I thought to myself ‘the CBD oil was changing the electrical activity in my brain but because I am taking the anti-epileptic drugs, which in some way disinhibit my brain functioning, I don’t notice any improvement the oil was making.’ So, I had an EEG and the results – no change in my epileptiform activity after being on the CBD oil. No change at all.
I spoke to my neurologist after reading the EEG report. ‘Is there anything else you could do for me?’ I asked. ‘No’, she replied honestly. ‘What about medical marijuana?’ I asked. ‘As you know the UK government has now set up a special panel, where on a case-by-case basis they will consider giving a licence to prescribe this drug. Do you think that this panel would consider that I have a good case for a licence?’ ‘It is unlikely,’ she said. ‘There is evidence that medical marijuana can treat ethe epilepsies Lennox-Gastaut syndrome and Dravet syndrome but there is not enough evidence to say it will treat your type of epilepsy. I think it is unlikely that they will grant you a licence. However, if you would like I can refer you to the professor at the hospital who specialises in medical marijuana to get a second opinion.’ ‘Ok,’ I said. But I realised that she was probably right in what she was saying. The panel would probably not grant me a licence – there just isn’t enough evidence that it would work for me at the moment (see endourpain.org for details of the process of granting licenses).
But as you might have realised, I’m not one to give up easily. My motto has been – if something doesn’t work – try something else. But I am slowly getting to the very bottom of the list of available alternative treatments. Nevertheless, it’s still worth continuing to see if I can find a solution to my problems. So – my next treatment is neurofeedback. I found out about it on a website about alternative treatments for epilepsy. There is some research evidence to say that it works but the reason why this modern gal knows that I am really hitting the bottom treatments available is because there are very few Facebook groups about neurofeedback, and the ones that are there are not very active.
As I understand it in a neurofeedback session the clinician firstly takes an advanced type of EEG to understand the brain’s electrical activity. The patient is then set ‘training targets’ – ie areas of my brain that could do with improvement. The treatment will involve watching a computer game or continuous movie stream and, just like Pavlov’s dog, when my brain’s activity is meeting those targets, the patient will start winning the game or will watch the movie continuously. When the brain activity drifts from these targets the patient will lose the game or the movie will be disrupted. Over many sessions (which can be 2-3 per week), the theory is, the brain will begin to regulate itself (The centre I am going to also offers biofeedback and non-invasive brain stimulation and I will let you know more about these if I am given these treatments). Does all this sound a bit whacky? No more whacky than putting a chemical pill in your mouth or getting a stranger to open up your brain and fiddle around with its insides. No-one really knows how the brain works – and sometimes you just have to do things a little ‘outside the box’ to get the desired result.
So just after the Jewish New Year, I will start a new journey, of I hope (and pray) renewal. It will keep me busy. I will let you know what happens.
Happy new year and well over the fast to all those who celebrate.