Every conversation I have these days seems to be a microcosm of Brexit – the UK’s seemingly never-ending attempt to leave the European Union. A dinner conversation about something mundane and inconsequential can in a split second turn and all of a sudden voices are raised; those involved in the discussion start to look agitated and neither side is going to give in and I think to myself ‘This discussion is just like Brexit – it is no longer about the issue in hand – it’s just about egos and who can win.’ I also have Brexitish discussions with myself about logistics – it starts with ‘How do I get child A to place B when child C is at place D?’ and then I end up just saying ‘I know all the facts but I haven’t been able to come to a conclusion. And now all I am doing is repeating the facts to myself hoping to find an answer which I can’t do at the moment. I’m driving myself mad. I’ll stop talking about it now and see if we can come up with a way to resolve this tomorrow.’
And I also see a microcosm of the Brexit discussions with my own medical situation. For over three years now I’ve been writing this blog about how I find life generally difficult and I’ve been tirelessly searching for a solution to make life easier for me. But I haven’t found one. It’s not that I haven’t tried and it is true that some progress has been made. But not as much as I would like. I fear, even, that these blogs have just got a bit boring and some people have dropped off along the way because my story doesn’t seem to be getting anywhere.
Nevertheless, I have decided to take a different approach to Boris Johnson, our somewhat error-prone Prime Minister, in dealing with my, well let’s face it, slightly less complicated situation. In February this year (on the 21st to be precise) I made myself a little ‘withdrawal agreement’. I told my children very sincerely that in a year’s time I bet that I would be able to drive. (My eldest daughter didn’t think I would remember this bet to myself so she made me a little poster – see above – to remind me of it, which we put on the whiteboard in the kitchen). I knew that when I made this ‘agreement’ there were a lot of variables outside of my control – I would soon be withdrawing from an anti-epileptic, after a period on a new medication, and in this period of withdrawal I knew that legally I would not be allowed to drive. I also didn’t know how I would react to the change in medications and if I had a seizure, as a result of changing medications, I knew that I wouldn’t be able to drive for another year. Even if the change went well, I knew that before I could get my driving license back I would need to write to the Driving Licence and Vehicle Authority (DVLA) to get their authorisation for my licence – and this is a bureaucratic process that can take some time. Nevertheless, I gave myself this target because it’s good to set a goal; to focus on the possible.
However, I now know that I didn’t have all the facts to hand when I made my ‘agreement’. It turns out that not only am I not allowed to drive whilst withdrawing from an anti-epileptic medication, but the DVLA also say that, because of the seizure risk, I am not allowed to drive for six months afterwards[1] If I had known that piece of information I might not have made the ‘bet’ in the first place.
But this is where I, and indeed I am sure many other people out there, differ from Boris in trying to resolve a tricky problem (however, as I say the problems Boris has do seem to be trickier that mine). Boris believes that the UK has set itself a ‘withdrawal date’ – the 31st of October and whether we have an agreement with Europe or not we will leave on that date, even if it means that the deal that we get on this date (a so-called ‘no-Deal’) isn’t very good. I believe that I have to be flexible with my target date for resolving my problems. Because I won’t be able to drive by 21st February next year, it doesn’t mean I have failed – it just means I have to re-evaluate my strategy but I still have to keep on going. I have come to realise that I might not get everything that I want – maybe I’ll never feel safe enough to drive (even if the DVLA said that I could); maybe my memory will never be what I want it to be, but I do still believe that there is a better way, that I’ll get a better deal, even if not all my problems will be resolved. But, unlike Boris, I believe that the only way that I can do that is if I am flexible about the date by which this will happen and compromise over what I am hoping to achieve.
In other news: This is how the current episode in this almost boring saga is going now: I am still withdrawing from my old medication. The side effects from medication withdrawal, it turns out, are quite pronounced and there is little research about how it impacts on patients. As I said, under the supervision of my neurologist I slowly increased my new medication and then once this was established, over an extended period of time slowly withdrew from the old medication. The first three days of each withdrawal had me wiped out – I went to bed and didn’t make much sense. Once I regained enough energy I went through the whole process again. Right now, I’m on the lowest therapeutic dose of my old medication and am soon going to increase the dose of my new medication further.
And the result? I don’t know. I’m not sure if all this effort and the cost the-medication-that-an-NHS-doctor-prescribed-but-the NHS-will-not-pay-for is making a difference. Some people are saying that since being on the medication I seem stronger. But I worry about the impact of the medication on my brain – it seems to me that an increasing amount of time the words that I mean to say are not coming out of my mouth. It is difficult to know if there are any advantages to my current strategy to finding a solution to my problems. However, I must fight on, with my flexible approach.
Last week I went to see my neurologist for a medication review and I asked her how I would source my new medication in the event of a no-deal Brexit. I knew already, from the Epilepsy Society website, that the pharmaceutical company were keeping a six-week supply of my old medication (which quite frankly is almost like saying that they are not stockpiling meds) [2]. My neurologist had no information about the stockpiling of my new medication and I emailed the pharmaceutical company but they haven’t responded. So, I do hope that Boris Johnson knows a thing or two more than me about how to resolve a tricky problem (without any medication I will almost certainly have a seizure). Millions of medication-dependent people, like me, are relying on his belief that he can.
[1] https://www.gov.uk/epilepsy-and-driving
[2] https://www.epilepsysociety.org.uk/contingency-plans-epilepsy-medications-case-no-deal-brexit#.XYi7uyhKhPY
Epilepsy and me 