Like many others, I haven’t written a blog post for a long time. Blogging is by nature a self-indulgent activity. It serves a purpose by giving other people information and for lots of people who write about their challenges, it is incredibly cathartic. However, the here and now in the big, wide world isn’t about me for so many reasons. Things aren’t looking very rosy for lots of people, hence the title.
This blog is supposed to be about my epilepsy journey and although I’ve seen lots of others in the epilepsy community continuing to push epilepsy awareness to the forefront of people’s consciousness in a business as usual fashion, that doesn’t feel quite right for me at the moment. I haven’t written for a while for this reason and I can’t carry on writing this post without acknowledging two important things.
Firstly, I’m white and I’m privileged. I haven’t always been very good at feeling other people’s pain when my own suffering has been at the forefront of every day but at the moment I’m not suffering, so I am very aware that there are so many people who have been, and will continue to be repressed until changes are made. I know that #blacklivesmatter and I’m not writing about myself in blissful ignorance of this.
Secondly, I can’t talk very much about Covid-19, I don’t know much about it from a medical perspective, the information we are fed is so skewed I can’t speculate about what direction things will take next and I’m fine with my epilepsy not being at the forefront of anyone’s things to think or read about because we’ve all got bigger concerns.
However, I did have my first appointment with my neurologist for six months yesterday (by telephone) and so it felt like the right time to at least share something, however inconsequential it might be compared to everything else which is happening.
I finally got the results of my genetic testing back, which (again I feel some NHS guilt because it sounds like they were extremely in-depth and therefore expensive) have confirmed I don’t have PME (Progressive Myclonic Epilepsy). In other words, I don’t have a neurological condition which is going to get progressively worse until it kills me, like Huntington’s Disease. I hadn’t really allowed myself to dwell much on the possibility that I might have this because other case studies I’d read seemed much more severe, but my neurologist sounded pleased to give me the results, so I guess she did have some concerns. I also don’t have brain granulation which was another concern possibly raised in my last MRI back in November. Again, this doesn’t mean much to me but being told you don’t have something is usually positive. So those particular chapters of my book can be closed.
The flip side of this is that they’ve now exhausted the battery of tests which can be run to find out WHY my condition altered almost two years ago now. The best answer which she could give is something to do with my thyroid. The tiny little bastard gland which sits in your neck and supposedly regulates all your hormones (not just the female ones, hormone do all sorts of things all over your body). To put it bluntly and in non-medical terms, it’s a pretty crap bit of kit; it seems to “pack up” for a lot of people and the collateral damage presents itself in myriad ways. For me, although the extent to which it stopped functioning perfectly is actually very small, it sent some kind of shock-wave which messed with the already slightly scrambly electrical signals in my brain and made the whole situation much worse than it had been for the previous 20 years.
I hope everyone is enjoying the depth and breath of medical terminology I’m using here and that it reflects how much I know about the thyroid gland……….possibly not much less than the experts considering the “well it might, but it might not” approach which is taken to discussing it.
Anyway, I asked if, as my thyroid continues to self-destruct (this is the case for anyone with a malfunctioning thyroid, it might not necessarily continue to get worse, but it’s a chronic condition, you can’t mend an over or under-active thyroid, you can only treat it), I can expect my epilepsy to change again and was told no……but we will see. As always, I’m a realist so I’m not skipping away writing this possibility off.
In terms of my current control over my epilepsy, it’s good. I’m down to a few auras a month (these are mini-seizures, not really visible to the naked eye in my case, they present themselves more as just horrible feelings of impending doom or just feeling not quite right, pretty inexplicable) and a very occasional single jerk, all of which go away if I take an increased dose of my rescue medication. Some of this improvement is due to Covid-19 because, as, as mind-numblingly dull as lock-down is, the slow pace of life suits my excitable neurons. I’m conscious that when I do have to pick up the pace, it might take a while for my body to readjust and things might get a little worse again.
I have one big decision to make, which is whether I want complete seizure control or not. I need this so that I can think about working towards being able to drive again, but it’s not as straightforward as it sounds and I need some thinking time. To do this will involve tweaking my medication and increasing it to see what happens. I know my current medication works but the side effects may become intolerable and it means I’ll turn myself into a walking time-bomb. If I have auras only for two years I can apply to the DVLA, (even if they continue) but anything else seizure-related in that period will set me straight back to square one. It’s a lot of pressure. At the moment I feel quite sad about the inevitability of not driving again but I also don’t want to be stressed about trying to make it through two whole years of not doing something which ultimately I have no control over whatsoever.
During lock-down, I’ve taught my body to run again, which has felt like a huge achievement but has also been really hard, I don’t know what changed in my physiology over the last couple of years to make it so much more difficult but I’m doing it. I’ve also held on to my job since January. These are both really big epilepsy milestones that were a long way from my periphery a year ago, which is why I almost wish the driving issue didn’t even exist. I’m going to try my best to repress any thoughts of it for the foreseeable future in the same way that I did working and running. In the current climate, I do feel embarrassed by the ‘first world problem’ nature of my upset as I know so much is going on right now that it barely registers as something to be bothered by.
I think it’s just the next stage in the marginal gains process and is one that I need to forget about, rather than making it my next ambition. It also rated really low for me personally when I did a lot of soul-searching in terms of recovery as something I wanted back. It’s just a little raw right now as it was the only topic I really wanted to raise with the neurologist yesterday (which again, is a good thing, as I didn’t have anything more troubling to discuss).
To close, I am going to write a little about Covid-19, not from a medical perspective, as I know nada, but from the point of view of a mother struggling to make it through lock-down. It’s bloody tough! We’ve stuck to the guidelines pretty religiously and consequently our children have had almost no freedom since 20th March. The enthusiasm we all had for family quizzes and no school-runs and long days in the garden has progressively dwindled and I’d be lying if I said I wasn’t concerned. My children have degenerated from being motivated, gregarious and affable creatures into increasingly more insolent beasts.
We will continue to uphold our part of the bargain and I won’t be letting them into shops or enclosed spaces until we feel it is safe, regardless of what the government advises but I know now that man is definitely NOT an island. Social media and modern technology has been a blessing and a curse for them and I can only hope that, when they are allowed to mix properly again, they still possess that wonderful adaptability which is innate in children and it hasn’t been sapped forever by these unprecedented times. They continue to work hard academically and I’m very proud of the way they’ve adapted to this but although they aren’t medically unwell, Covid-19 has taken away a lot of their spirit and I dearly want it back.
Stay safe and well and, as much as it pains me to say it “stay alert”.