Today is Epilepsy Day, so I thought I’d detail my experiences of suffering from the condition.
The FA Cup victory at Hillsborough in February 2014 is among my favourite nights spent supporting Charlton Athletic. A night of unbelievable emotion, with victory achieved despite the poison of Roland Duchatelet’s reign beginning to spread through the club, and the dream of a Wembley appearance kept alive.
So too was it a night of moments that simply cannot be forgotten. Simon Church’s goal-scoring elbow, Louis Mendez’s bare chest, and Chris Powell swinging from a crossbar. Wonderful.
The next day, a stranger saw the Charlton badge on my jumper. “Great result for your lot last night, aye?” he said. I simply smiled.
The problem is, I have forgotten much of that night, and I could do little more than strain a smile at the stranger.
The stranger preparing a dazed, confused and overwhelmed me for an MRI scan. My body and mind as fragile as they possibly could be. I would have been terrified, if I’d had the energy to be terrified.
At some point during the morning after the Sheffield trip, I’d had my first ever seizure. My dad finding me covered in my own sick, having collapsed in my room while getting ready to return to university. I don’t remember coming around until two paramedics were standing over me inside an ambulance.
I was at the hospital for several hours, long into the afternoon I think. But the only two things I have any recollection of are regaining some degree of consciousness while in the company of the paramedics, and being readied for an MRI scan by a chap quite interested in Charlton’s success.
At the time, I simply assumed it was a consequence of being exhausted from travelling, and not getting enough sleep the night before. I didn’t get home until late after that win over Wednesday, and remained awake for quite some time after that to make sure every ounce of emotion was put into my match report.
I’d had a few strange shudders and shakes in the preceding months, but didn’t think much of them and didn’t really relate them to this seizure. Again, they were surely a consequence of tiredness. Or maybe linked to my mental state, as this was the moment where my depression and anxiety went from troublesome to completely crippling myself and my life.
In fact, I’d had those shudders and shakes looked at before this seizure. A couple of blood tests, one in Milton Keynes and one done by the university nurse while I was studying in Eastbourne, showing nothing untoward. Definitely all related to not getting enough sleep and feeling drained; nothing more.
My GP didn’t suggest epilepsy. The university nurse didn’t suggest epilepsy. As far as I recall, epilepsy wasn’t suggested during that unplanned trip to the hospital and, even if it was, I didn’t leave the hospital being told to pursue an epilepsy diagnosis.
I always wonder to myself what might have happened if I’d been immediately diagnosed with epilepsy. Would earlier treatment as it started to appear mean I wouldn’t be in the situation I’m in now? Would I look at Epilepsy Day as one of the many who have the condition under control, and not as someone who suffers regular seizures and has their life effectively dictated by it?
In fact, it wasn’t until July 2015 that a medical professional threw the word “epilepsy” in my general direction. A nurse at Chesterfield hospital, who coincidentally went to the same Milton Keynes school as me, quite surprised that no one had previously suggested I suffered from epilepsy.
I was at Chesterfield hospital after having a seizure during a T20 game at Queens Park between Derbyshire and Northamptonshire. I was taking photos, consumed by the event, and then all of a sudden being shouted at by a paramedic in an ambulance.
In a perverse way, that seizure was incredibly important. And not just because it allowed me to discover I was suffering from epilepsy.
First of all, Northants captain Alex Wakely asked the local Northamptonshire media to find out what had happened to me. Since then, I’ve had a nice relationship with the Northants players, and it’s really helped to make watching cricket feel like a genuine distraction. I watch it alone, but it’s probably the only time I don’t feel alone.
Secondly, it confirmed my decision to quit university. I was neither in a fit enough state mentally or physically to contend with living away from home, in an environment I despised. A decision made to focus on my health has actually resulted in my health decreasing over that period, but it remains the correct decision.
A diagnosis wouldn’t come until the end of September, by which time I’d had a few more seizures. The most serious of which involving me collapsing onto a radiator, having a chunk of my head displaced, and my kitchen turned into a swimming pool of blood. Still decided to referee that evening, and the way I felt after suggested I probably shouldn’t have.
Generalised Idiopathic Epilepsy the diagnosis. In simple terms, I’ve got a form of epilepsy that can’t be detected viva MRI scans and the like. It’s just sort of there, having appeared out of nowhere at the age of 18.
The diagnosis was supposed to be a positive. The stories of people living perfectly normal lives despite having epilepsy were plentiful, while being banned from driving and warned against drinking alcohol didn’t bother me as I do neither. A bit of awareness, treatment and support was going to sort me out.
Alas, that hasn’t been the case. Since my first meetings with my neurologist and the epilepsy nurse, and being placed on an anti-epileptic drug for the first time, my physical and mental condition has decreased and decreased.
That isn’t at all a criticism of the medical support I’ve had for my epilepsy. Both my epilepsy nurse and neurologist have been incredible. I feel like I have a really good relationship with my epilepsy nurse in particular, who seems to genuinely care about me, going the extra mile to ask about my mental health.
In fact, when I contacted her about a seizure a few weeks ago and expressed how low I was, she contacted the emergency services when I didn’t respond for an extended period of time. A bit over the top, you might suggest, but it’s quite reassuring to have someone care to such an extent.
And nor is it a criticism of the support I’ve had in general. My parents, particularly my dad who has had to deal with me having seizures on various occasions, incredible, the relative strangers of Twitter always caring, and Johnnie Jackson, Chris Powell and Bradley Pritchard’s acts of kindness have been invaluable in many contexts. Support I couldn’t cope without.
But various medications at various quantities in various combinations haven’t worked. In the previous 18 months, I’ve been lucky to go a month without having at least two seizures, and have jerks and shudders on a near daily basis.
The physical effects of the seizures themselves are obvious. I collapse, I bang into something, I bite my tongue to pieces. I can’t really function for a few days.
But the day-to-day physical things I have to deal with are just as frustrating. I feel weak and exhausted all the time, my limbs constantly ache, and I’m almost always dazed and have headaches. I relate this weakness to epilepsy, in addition to the side effects of the many, many medications I take and have taken.
I’m far from being physically incompetent, and do try to live as much as I possibly can. I don’t work and don’t go out much, but I study intensely from home and I’m consistently getting good grades. I go to football and cricket, and my photography efforts provide a focus, while I surprise myself by how well I cope with refereeing.
Those things help me to force myself to almost rise above the physical restrictions that are there, and most of the time doing so isn’t a particularly difficult challenge.
But then there’s days, usually after engaging in those activities, where I can’t lift myself out of bed. Where I can’t get up without feeling unsteady and ultimately collapsing in some way. Where I just feel overwhelmed by this weakness.
There’s a mental aspect to all this, too. Part of which is related to my depression and anxiety, making my mental health worse. Increasing my fear about leaving the house alone, increasing my self-loathing and belief others have a low opinion of me, and just generally feeling low.
And also quite regularly there are days where I feel mentally sound, and have that ruined by a seizure or shudder out of nowhere. From fine to completely mentally and physically crushed in a matter of seconds.
The frustration and anger of having to deal with epilepsy has really got to me in recent weeks. Probably since the turn of the year, where I’ve had some quite heavy seizures, regular jerks that have had a big impact on me, and felt generally very poor physically.
I had a seizure the night before the home game against Millwall, and then one on the morning of the game. I had two seizures prior to the postponed Scunthorpe game, in addition to constantly collapsing even when conscious. The physical pain was awful, but it was second to this sense of anger and fear that I don’t think has really left me since.
I guess, in simple terms, I don’t like being epileptic and I’d like to feel better. The fact I’m not feeling better is upsetting me more and more.
In the next few weeks, I’m going to be having an ambulatory EEG test. I’m not entirely sure of the ins and outs of it myself, because I went into a state of panic while my epilepsy nurse explained it to me last week.
But the gist of it is that I’m going to have some wires stuck to my head for a few days, which will be connected to a small box that I carry around, and my brain activity will be tracked. The uncertainty it provides is making me terrified.
So too is the idea of having to potentially walk around with this thing stuck to me making me very worried. The idea of all eyes being on me, wondering what’s wrong with me. Feeling abnormal and isolated.
Almost all of my issues, mental and physical, have some sort of relation to loneliness and isolation. To hating myself, and feeling that others don’t like me, without any sort of rational thought. This, though only for a few days, isn’t going to help that.
Nonetheless, I can see that this is a positive step. The people who medically support me are being proactive, and wanting to find out how best to treat me rather than just throwing more meds at me. Hopefully the ambulatory EEG will ultimately lead to improvement.
Because it would be quite nice to have the issue of epilepsy out of the way, so I can focus on addressing my mental state. It would be quite not to live in fear of having a seizure, and restrict myself because of that. It would simply be quite nice to be normal.