I’d like to use this post to discuss mental health, in relation to my own experiences (with respect to my epilepsy) and also my own thoughts about the wider picture, especially since it is very much a topical issue.

I’m starting with a very potted history of the treatment of patients with epilepsy in the past. The only real advances in it’s treatment (even in the most scientifically developed countries) have occurred in the last 20 years or so, and even then it is a sad reality that, as with lots of other neurological conditions, the workings of the brain are still a long way from being properly understood.

Historically perceptions of epilepsy and its’ patients have, at separate times, been known to include sexual deviancy, mania and possession by dark forces; all of which are conditions which manifest themselves psychologically (in other words they would alter the way you think). Interestingly, the treatment for these conditions was usually physical (electric shock therapy, physical punishment (ducking stool) and then medication). During the Holocaust it also attracted the attention of eugenic scientists because it was perceived to be an indicator of “feeble mindedness and decreased intelligence” (it’s bloody not I’ll have you know!!!).

Although comprehensions of what causes epilepsy and how to treat it have improved, it is my experience that there is still a real lack of communication and understanding between neurologists and psychologists and the benefits of holistic therapies. I don’t know if this is due to stubbornness or them refusing to believe they can be compatible.

I’ve hit such a brick wall in terms of getting any kind of beneficial mental health support. I see a private psychotherapist who wants to try a specific type of therapy on me but she can’t as we are waiting for approval from my neurologist (see predicament described above). I’ve been to my GP so many times and sat and sobbed and they look very contrite but explain they can’t do anything…..I’m on a waiting list and that’s the best they can do. Not once has my neurologist acknowledged that this might all be playing havoc with my state of mind.

So, in relation to my own personal situation………am I going mad? My answer would be a resounding yes. I don’t know how you define insane but at times I feel it. This is caused by the heady cocktail of drugs I’m taking (which now includes cannabidiol, wahey!) and also by the uncertainty of my situation. I have periods where I can’t rationalise my situation (which is not life-threatening or actually that bad in the general scheme of things) and the grief of how I feel literally overwhelms me…..my sense of perspective becomes really skewed.

A book I reread recently (another medical book I’m afraid) really summed up for me how having a hidden medical condition feels and how it impacts your every day thought processes. It’s by a lady called Jessica Thom who has Tourette’s Syndrome (yes, that’s the sweary one) and is written in the format of a diary spanning a year of her life with Tourettes. She writes that ‘[my] strange behaviour makes me feel like I’m crazy. I do things that confuse and frighten me…These things don’t scare me because of the inherent riskiness but because I don’t understand where the behaviour comes from’. She then goes on to explain her friends think of her as the sanest person they know and that she struggles because she places so much importance on the opinions of others (about her).

Her observations are so spot on for me and although Tourette’s is a different ball game (because it’s a constantly visible disability) the concept of feeling ‘crazy’ is so familiar to me, even though I mostly know I’m not mad and my thoughts are working normally in my head, I’m constantly worried that I am losing my grip on reality. Even though I know it’s the anxiety causing this I can’t detach it from the epilepsy. Despite my therapist constantly telling me that being able to voice these thoughts proves my sanity I feel like I’m reinforcing Victorian stereotypes. Although it might sound like I’m being flippant, in my weaker moments I have desperately wanted to be sanctioned as I’ve truly thought this is the safest place for me.

I know that the section below makes for some pretty grim reading but I just wanted to share with you some of what I’m working on in relation to my mental health at the moment. I don’t know if it’ll help anyone personally but it might make you aware that it really doesn’t discriminate; I was such a together person and it still “got” me.

Part of my problem relates to medication I’m being given, the side effects are truly horrendous (and I’ve read other peoples experiences with medication for all sorts of things which have left them feeling the same way). I’m quite literally like a lab rat; I’m warned of the side effects but not offered any support for dealing with them.

I’m ashamed to say that, prior to July I didn’t really have much time for the concepts of anxiety or depression. I’ve never considered myself to be superwoman but I honestly thought that it couldn’t happen to me, that I didn’t have the right personality type and that my eternal optimism would always see me through. I struggled to empathise with anyone who was living a life controlled by anxiety and although I’ve always prided myself on my kindness deep down I thought their behaviour was the result of some kind of parental mollycoddling. I now know this is bullsh*t.

It hit me like a ton of bricks. My world very quickly became smaller and smaller until it was so shrouded in “safety behaviours” everything was complicated. I can work to remove some of these only to find I’ve unconsciously replaced them. They’re illogical and impractical (for example I’ve realised I only feel comfortable out in public with a hat on….I don’t want to wear a hat but it messes with my head if I don’t have one on!). I usually feel better if I do go out but it’s really tough to force myself to go. I’m also very harsh on myself and don’t recognise when I’ve done things which are really hard for me to do because it makes me feel weak to admit they are hard.

Most of the pills I have to take come with a “suicidal thoughts” warning, I’ve never taken this seriously before. A few months ago my despair was so severe (just because I thought I wasn’t ever going to get better) that I started to question my “usefulness” on earth. I was so dramatically emotional and such a drain on those close to me I began to formulate ideas that life would be easier for them without me in it. This process was terrifying because it didn’t feel like I’d imagined it would. I always thought suicide was a careful considered process by sad people; it wasn’t “for me” yet so quickly it occupied my thoughts as a reasonable solution.

It still isn’t for me, it’s not what I want but some chemically induced monster “got me”. I hope this paragraph acts as a warning to anyone reading to pay heed to those information leaflets. Thankfully my dose of that drug was reduced and these feelings have mostly subsided. But I just can’t stress how much those feelings felt like they were completely beyond my control. All my recent bouts of depression feel like being stuck under a heavy blanket, you’re fine underneath it, you’re not sad, you just feel normal….but you can’t get the blanket off. It doesn’t matter what you do it just won’t lift.

Sorry that this post has become rather maudlin. I’m okay, I have really bad days but I know they are happening. They’re evil and upsetting but they pass.

I think one of the most frustrating things about mental health for me is talking about it hasn’t fixed it. Epilepsy might’ve dampened most of my spirits but I still love to talk (albeit in a safe place, hence the blog). I can talk until the cows come home but (possibly because I’m awash with chemicals) it won’t go away. I’m totally subservient to my emotions and when I have a seizure my confidence plummets and my anxiety and depression soars.

When I was paragliding (just once, totally overplaying the adrenaline junkie theme here) and running half marathons and smashing career goals I would’ve told you I was a warrior, I would’ve professed that #thisgirlcan…..but despite my diagnosis I didn’t really “have” epilepsy then. I had a named condition, I popped two pills daily and that was it!

I had control, and when you have control of a situation you can usually feel like you’re achieving something. When you lose control the sh*t hits the fan. When I look at the quote which is the title of this post I KNOW my response to the reality of my situation is NOT proportionate; I don’t have a legitimate excuse to go insane but I hate that no amount of perseverance on my part is going to fix it.

I’m not a big advocate of always being an “epilepsy warrior” or “kicking cancer’s butt” at the moment (yes I know cancer is a totally different kettle of fish) because I think it’s okay to be realistic. Sometimes, for me just reflecting afterwards is more beneficial than setting goals, even short term ones. I feel happiest in the morning when I can think about yesterday and know it went okay. That pleases me more than hoping today will be okay, because I can’t cope when it isn’t.

I’d like to think that when I’m closer to being myself again rather than campaigning for greater awareness about epilepsy I’d commit to promoting better mental health services. It might well be “okay not to be okay” or to feel a bit insane but it’s shocking that there isn’t anything there to help you feel better (yes I know there are anti-depressants).

I told my GP that I was having suicidal thoughts and she said she was sorry, looked concerned and handed me a piece of paper with some contact numbers on it! When doing the telephone assessment for my state funded psychotherapy sessions (which I’m still on the waiting list for) I told them that on a scale of 1-5 I had had occasions when my suicidal thoughts had veered towards a 3 and they swiftly changed the subject…..not because they are incompetent, but because they are SCARED…….scared because they don’t have anything to offer me, there isn’t a resource available to fix it so they have to hope for the best and pretend they haven’t heard. All I hear is stories about children and adults who so desperately need mental health support, for a multitude of reasons and it isn’t there!

If you got this far well done, I expect you probably feel that I’m not insane but are a bit surprised that I’m willing to share the depths of my emotions with you. As I did warn in my introduction, I’m unflinchingly honest. Please also know that I’m okay. I haven’t got a timeline but at some point I suppose I’ll get there. If I’m not coping then you’ll probably read about it in this bloody blog!

I promise I’ll find something funny to write about next time; I’m due a stay in an epilepsy facility for some monitoring so I’ll report back in due course.

This post is written to give those of you who haven’t had any experience of it some information about what it actually feels like (physically and emotionally) to have epilepsy and to explain a little bit about what it actually is.

Epilepsy is caused by abnormal electrical activity in the brain. Everyone has electrical impulses generated by their brain which send signals to the rest of the body. In people with epilepsy these are a bit haywire and sometimes don’t do exactly what they are supposed to, it sends signals which then impact the rest of your body causing a seizure. Because the messages are responsible for the whole sensory output of your body  epilepsy can affect all of your senses. There are only six types of epilepsy but the symptoms of seizures (what the outside world sees) can present themselves in over a hundred different ways. It’s also possible to have seizures which AREN’T epileptic (there has to be this electrical activity in the brain for it to be epilepsy) therefore you wouldn’t normally be diagnosed as having it until you’d had at least one episode.

I’m not sure why but most people now don’t seem to say the word ‘fit’ when talking about seizures, I don’t know if it’s not considered politically correct or it just doesn’t fit the description very well or what happens. I personally don’t mind it so please don’t feel obliged to say seizure if you want to ask me a question (I’m not keen on ‘episode’ though, personal preference but I think it just makes it sound like I’ve lost the plot even more than I actually have!).

As far as I know I have three different types of seizure.

The first are tonic clonic. These are the typical ones you see on the TV; fully unconscious, jerking and stiffening of the limbs. I can’t tell you much about what it feels like to have them as I have literally no idea they are happening, before or  after (which is pretty scary and embarrassing). Foaming at the mouth is a bit of an exaggeration but Marc did tell me once that I make a funny noise and purse my lips and blow bubbles, his closest point of comparison is the children’s TV character Pob (see picture if you can’t recall Pob). When I come round I’m very confused and usually have a bastard of a sore mouth from biting through my tongue. It’s also incredibly draining on your body so it means you need to sleep for quite a while afterwards (not sure of the calorie burning potential of all that concentrated muscle use!)

Thankfully I haven’t actually had any seizures like this for over 9 years (since my youngest daughter, Jess was a baby). Through my life they seem to have been caused by my hormones and then triggered most of the time by irregular sleep patterns and alcohol. I started to take medication for them after Jess was born and mercifully since then they’ve been controlled.

In a way, although these are the most dramatic, potentially life-threatening types of seizure I have, they are actually the least intrusive as I/we have for the most part been able to pinpoint exactly what has caused them and they’ve responded well to treatment.

The other two are what are blighting my life at the moment and are a total pain in the arse!

I suffer from myclonic jerks, there is a short video clip below which shows what these look like:

https://www.epilepsysociety.org.uk/myoclonic-seizures#.XAkrnWj7TIU

These were the first signs of epilepsy which I developed as a teen. They were controlled really well by my medication until about 5 months ago but for some reason it has stopped working as far as they are concerned.

I usually get them when I first wake up in clusters and although it sounds exaggerated it’s not unlike having a lesser version of locked-in syndrome. I don’t lose consciousness at all and I’m completely aware that they are happening but I can’t move as they affect my whole body. If I try and ride them out or carry on through them they get worse so I simply just have to sit or lie quietly waiting for them to pass. This usually takes from about 20-40 mins. They aren’t life threatening in themselves (unless you happened to fall onto something dangerous as a result of one) BUT they can be a warning a bigger seizure is coming. So far this hasn’t happened but it does make me cautious about trying to carry on regardless during them. Since September I haven’t made it more than 5 days without having this type of seizure and often they come for up to 5 days in a row.

The third type I have are called focal seizures (so called because they are generated by one ‘focal’ part of the brain). These can present for people in tons of weird ways including suddenly running, uncontrollable laughing, hallucinating or experiencing a strange smell.

For me they first appeared about 20 months ago and they feel like a really strange wave-like feeling which surges up from my feet through my whole body. I’m 100% conscious and aware of it and other than me perhaps reaching out to steady myself (again only if you were aware of me doing it) they are completely invisible from the outside. It usually follows with a really intense feeling of fear that I’m going to have a seizure. This whole process only takes about 3-5 seconds but leaves me feeling unsettled for a while afterwards. When these first happened I had literally no clue what was going on; I went to the GP and described it (mostly relating to my fear of having a fit after 9 years of being absolutely fine) and she dismissed it as anxiety. This wasn’t negligence on her part as at the time I had no clue what was happening to me either and I wasn’t registered with a neurologist as I had no reason to be doubtful.

These feelings pretty much went away for about 18 months until this Summer when, for no explicable reason they came back with a vengeance. After they began happening on a daily basis I did some research and discovered that these ‘surges’ and the feeling of fear ARE actually symptoms of seizures in themselves. I’m now under a neurology team and (painstakingly slowly) being investigated and experimented on.

The worse part of them is that they cause anxiety (in various forms including OCD/intrusive thoughts, which is the most horrible affliction ever, speaking as someone who had never experienced it before) AND they feed off anxiety, so on a really bad day one happens, it causes fear which then triggers another ad infinitum. I become trapped in a cycle where my own brain is making me ill through it’s thoughts, I’m screaming at it to stop but I can’t stop it! On my worst, most desperate day to date this literally happened thousands of times all day delivering a fresh jolt of electrical impulse every single time. It’s not fun.

Medicating epilepsy is a very trial and error process. Anyone can have the potential to have an epileptic seizure if they are exposed to risk factors enough, but those who do actually have it have a lower seizure threshold (as in it takes less flashing lights, alcohol, exhaustion, stress etc. to send their brain over the edge) therefore the idea of medication is it brings that threshold back up again effectively “blocking” the triggers. Different types of barrier work for different people so there isn’t one ‘cure-all’ pill.

I’m not going to dwell on the emotional side of it for too long as my emotions don’t need any encouragement to drag me back down into the depths. I’m trying so hard to investigate and make peace with the what, when and why’s of this situation but so far we haven’t built a good enough barrier for me this time. I cry, I kick things, I swear and I feel like giving up on a regular basis. The lack of consistency is the worst part as there isn’t a reliable pattern.

Sorry, this post isn’t very jolly, but hopefully it is informative. If you want to know anything else just ask me.