For the purpose of this post I would like to point out that I am not (or claiming to be) in any way, shape or form a medical professional. I do research the topics which I write about but this is wholly empirical and the content of my post is based on my opinion. Anyone who wishes to contest it should feel 100% free to do so.

This inspiration for this topic came from the book I am currently writing about twin boys with a genetic syndrome called Fragile X. I was exploring the idea that, not too many decades ago, most people with learning difficulties would just have been called ‘simple’, given help and support if it was available and sent on their way. If there weren’t any obvious recognisable traits then testing and probing wouldn’t have taken place. While Fragile X is the most common genetic cause of developmental difficulties in the world, it doesn’t have a generic check list of symptoms, so diagnosis doesn’t necessarily mean addressing it is straightforward or universal. In this respect it mirrors epilepsy because in both cases there does not exist an archetypal person with the condition.

Medical science is a truly marvellous thing and the advances which have been made in understanding the physiology and psychology of humans is amazing. Being told you have a disease and then being told that the treatment plan you are being prescribed is A,B,C is indisputably a good thing. In the case of inherited conditions it also helps people make informed choices about family planning. Diagnosis often brings about cures, opportunities for research and makes people feel optimistic.

So why on earth am I questioning its benefits?

In short it’s because I’m due to see my neurologist next week to let her know my condition hasn’t improved. My morale isn’t too great because I know that statistically the odds of being ‘fixed’ decrease with each subsequent medication change. I don’t relish the thought of being launched back into the Russian roulette wheel of side effects and I don’t know at what point I should say “is this it? Just be honest and confirm to me that you don’t know how to make things better despite you telling me you would!”.

Whingy, whingy, whingy I know and I’m sorry but I hope it justifies my scepticism about whether diagnosis is all it’s cracked up to be!

I want to be able to explain how diagnosis can feel from an inside perspective. It’s not something which is easy to explain and if you aren’t the person with the issue (or the parent of a child with the issue) it’s difficult to fathom how knowing what is wrong could possibly have pitfalls.

I know for some people diagnosis of a condition causes misery because they don’t like the idea that they will be shackled to medication for the rest of their lives. Even if that condition can be well managed (thyroid issues, high cholesterol etc) the medication itself represents a loss of control or a reminder that their bodies are not the well-oiled machines they once were.

For others diagnosis brings fear and uncertainty (holding my hand up to this one). Sure, being given a medical diagnosis means that professionals can get to work on making things better but it also opens up a huge abyss of second guessing every single thing which happens to body and mind; is the extra hair on my chin (yes I have no shame) a side effect of medication or a hormonal imbalance? Is the spasm in my lower back because my bones are beginning to succumb to osteoporosis (long term medication side effect) or just because my rucksack is putting too much pressure on it? What if the odds of treatment aren’t good?

It’s not quite the same as being a hypochondriac as I don’t think it’s unreasonable to want to research the diagnosis you’ve been given; twenty minute six monthly appointments don’t really give you the chance to ask everything you need to and filling the gaps between those appointments with trying to understand what is happening to you is only natural. As far as I know I don’t have a degenerative condition so if things seem to be getting worse I want to know why. I’m not sure if people do exist who can just walk away from being told they have epilepsy and not want to ask any questions but I’m not one of them.

Diagnosis of mental health issues is also another issue which sometimes perplexes me. I attend a CBT group run by the NHS for people with long term health conditions. At the introductory session “icebreaker” every single participant added depression and anxiety to their list when explaining their medical condition. I was diagnosed with situational depression or adjustment disorder. This means the depression is a direct result of my epilepsy. Again, only my opinion, but I would hazard that every single other person in that room also has situational depression; they are depressed because their lives are limited, they are in chronic pain or frustrated because they can’t work or do the things which they were previously able to.

For me this specific diagnosis was very helpful, it was given by a neuro-psychiatrist rather than a GP and because of the nature of it I refuse to take anti-depressants. I have nothing against them but I know I’m not clinically depressed, I’m depressed when I can’t do things which I want to do. I don’t want more chemicals to counter the chemicals which are causing the feelings! The word “situational” made me feel rational. I am not suggesting that the other members of the group have their anti-depressants taken away but I was very aware than no-one had told them this was why they were depressed. Anxiety and depression were just two more words which they had had added to their lists of ailments to make them feel beaten.

I’m also on the fence about whether giving a diagnosis for children and adults with learning or behavioural difficulties is 100% helpful.

Having a name for a set of behaviours or challenges does help to provide structured interventions based on what theory has proven to work in the past. It also helps us to know whether we can use specialised resources as an aid or to make allowances and adjustments, but does it make us blinkered to the individual?

As an example, Autism Spectrum Disorder presents itself in a huge host of ways (hence the spectrum) and I sometimes wonder if positive and negative behaviours get so lost in the diagnosis that natural personality traits just become treated as a part of the ASD. I am sure I’m not the only person who would instinctively assume a joke made by a child with ASD was a quirk of the ASD rather than him/her just being funny, this is a terribly generalistic and derogatory response but it is also in our nature. If I met him with no prior information would I make a conscious decision to respond differently?

Diagnosis has a habit of putting us into boxes and it’s not always easy to open those once they’ve been built. The boxes don’t always make things easier, they are scary and the labels on the boxes make you instinctively look for certain things rather than waiting to see if they appear or not. There might be ways of helping which don’t fit into that particular box. Other people might also not want to look inside the boxes once they’ve been labelled or might not know what the labels mean.

I have another personal grievance with diagnosis which relates to my granddad. He is 89 years old and his health is not perfect, which, at 89 is a realistic eventuality. His mental capacity is still extremely good and therefore when he was given a diagnosis of Alzheimer’s disease around six months ago we were all quite shocked. It was never fully explained to us why the diagnosis was given other than his failure to achieve expected scores in a series of memory tests and perhaps his own oral testimony. His memory is good for his age and he can still converse at length about things which have happened in the past and present and remember birthdays and appointments.

The diagnosis of Alzheimer’s has been very detrimental to his mental health, he feels sad that he has been given this label and that it is further confirmation his body is failing him, but he doesn’t doubt what the medical professionals have told him. We’ve talked about how, in decades gone by, memory loss would’ve been regarded as a sign of ageing. I understand that early treatment can help to slow progression so I’m not disputing this but I’m sceptical about whether giving the label Alzheimer’s is of any benefit when he doesn’t present any of the more distressing symptoms or difficulties of the disease at present.

To me this again seems to be a case of diagnosis being doled out with too little regard for the person inside the diagnostics. Has anyone questioned whether his quality of life has been made any better by being told he has Alzheimer’s?

Once again, I’m sorry for the grumbling, I have medication which keeps me alive and access to a world class medical system, in many respects I am lucky. I just wish my own personal progress could be more linear and then perhaps being diagnosed and all its connotations wouldn’t feel like such an albatross around my neck.

 

If you choose to read this post please indulge my short term Messiah complex and allow me my soapbox moment. I desperately miss preaching (metaphorically, not literally the word of God) to a class of enraptured/bored teens and in lieu of them this is my vehicle.

As unbelievable as it may seem the examples I want to discuss today are all 100% genuine AND have all occurred in the last couple of weeks. If you view incidents in isolation they can easily pass you by but if you reflect on them collectively you can draw wider conclusions and on this basis I am coming to realise that the internet is becoming our nemesis.

Firstly, to keep it loosely epilepsy related, let me explain how the internet has had a negative impact on my health. As I have discussed previously Dr. Google is everyone’s worst nightmare, it does matter how much you are told to steer clear, it takes herculean willpower not to self-diagnose a myriad of complaints because it is so easily accessible. From a wider perspective this also probably puts increased pressure on the already struggling NHS as people then want official confirmation that their self-diagnosed condition is real. On a different slant I’ve seen posters on social media which proclaim to explain how to “recognise heart attacks in women” or “give CPR the correct way”. The reason these are problematic is that there is no provenance. Fantastic if they raise awareness that women DO have heart attacks too but how are we to know if the symptoms listed are accurate? What is the worst case scenario if they are not? I’ve seen comments claiming they aren’t helpful but again, are these correct?

Secondly, in relation to epilepsy, I am a member of a number of forums for people with the condition. This isn’t necessarily a bad thing as it is very much a situation which can only be understood by those experiencing it, so they offer a good support network. The huge pitfall is that everybody with epilepsy is different. People frequently ask about the side effects of medications. They are real and do exist and aren’t very nice BUT I can honestly say when my epilepsy was perfectly controlled I had no idea that they could be so problematic. People are very quick to profess that a specific medication caused them to have uncontrollable rage or depression and the comments will gather momentum until you become 100% convinced that taking these drugs will be detrimental to your mental well-being. It is very difficult to measure the extent to which you would worry if you didn’t have communities of people telling you that you need to worry. First case in point of the internet perpetuating fear.

Next, I’d like to talk about how I am becoming more and more concerned that access to the internet is completely destroying the future generation. I fear for my children’s freedom of movement, their chances to be independent and for their emotional well-being and I think the predominant culprit is the internet.

My eldest daughter spoke to me last week as she was mildly upset that she had fallen out with a primary school friend. They don’t see each other now barring an occasional coincidental bus journey so I was baffled as to what could’ve happened. She explained that the girl had questioned her as she’d been outed as a ‘fake friend’ (youth speak for someone who spreads snide rumours about you behind your back). I asked how that would have even come about and she showed me an anonymous Instagram account called #whoisyourfakestfriend (parents be warned, tons of these exist nationwide). The whole premise of the account is that children/teens contact the invisible host and ask who their “fakest” friend is. The host replies with a name but then refuses to reveal the reason or the basis for their answer as they are “protecting the other person’s privacy“. The children for the most part have private accounts so the host is someone in their friends list, but these friends are spread across the whole borough (up to ten different schools) so it’s impossible to pinpoint the origin. I was initially shocked by my own daughter’s naivety and the concept that she could fall out with someone based solely on a completely unsubstantiated rumour from an unknown person, until I looked more closely at the page and realised around 50 children had also fallen hook, line and sinker for the same ploy on this single page alone. I saw photo after photo of children begging to know what they had done wrong. I tried to explain the ludicrousness of the circumstances to her and made her unfollow the sites but I could see she still wasn’t convinced.

I don’t understand how these ideas are even spawned. Instagram was a platform for sharing photographs at its conception. How have these ideas which perpetuate hate come about? Who poisoned some child or children’s minds so that they would think this is a good idea? I would like to think that these children are not future Jon Venables or Robert Thompsons but it’s also not just banter. The internet is making our children insanely vulnerable and I don’t know how to stop it. The strongest willed amongst us still manage to protect their children from social media but this in itself seems so sad when we consider what it’s original purpose was.

The internet also seems to have become a tool for perpetrating fear, hate and vigilantism amongst adults. I am a member of a Facebook group which is dedicated to keeping my local authority safe. This in itself is a noble gesture, I wholly agree that knife crime and attacks on innocent victims have risen to terrifying levels and being aware of this is a sensible precaution. However I am also horrified by the amount of scaremongering (which is often completely unsubstantiated), thinly veiled racism and threats to “take a stand” by organising unofficial patrols to protect our children. If you are a member of a ‘park patrol’ and see gang behaviour which appears to threaten the safety of others are you going to kill them? Are you going to chase them so that your own family have to worry about your safety?

I saw a series of pictures a few weeks ago of a man causing trouble in a local town which was circulated in this ‘safe borough’ group. Within thirty minutes it was reported via unofficial channels that he was “wielding a knife”. The same happened in a local school; a fight broke out and (again because we all have constant access to channels of communication via our phones) within an hour titbits of information had escaped, it was reported that the school was on lock-down and that the fight involved a knife. In both these cases the rumour mill span out of control without any hard evidence. I know that in the case of the man he actually had severe mental health problems. He was behaving inappropriately but he did not have a knife and was swearing but not threatening violence. Can we honestly say that in our own childhoods similar circumstances might not have arisen? Did our parents massively stigmatise an individual and run screaming about weaponry?

In the case of the school incident I do not know the full circumstances but I do know that the scaremongering was not productive. If your child was at school, you worked over an hour away and you saw via social media that there was an alleged report of a knife what would you do? Would you leave work? Would you sit and cry at your desk fearing for your child? Would you demand that all schools install metal detectors and carry out stop and search on all pupils? Would you want it to just be boys? Would you demand the school canteen only uses plastic cutlery?

I feel that the internet has made us lose all ability to think rationally. I asked some people about home security and a few mentioned a “Lucille” bat (for those that don’t watch the Walking Dead it’s a baseball bat wrapped in barbed wire). I am scared because I don’t know if they are joking. Are we a few steps away from legalising hand guns “for our own protection”? I have even begun to wonder if the creators of these groups realise they have created a monster as I notice more and more posts are being declined or having their comments turned off because the “people’s voice” has become nothing but a mob mentality.

My other daughter is due to attend a two night residential stay at a local outdoor pursuits camp soon and this morning I received news that a member of staff there has been arrested on charges of child grooming. These circumstances are of course disgusting but the reason we know about this is because the details of the police investigation were leaked onto social media by a group of paedophile hunters whose sole purpose is to make the public aware of sexual criminals in our midst. Yes, I appreciate we do have a right to know (this is what the sex offenders register is for) but are these hunters doing us a favour? From my perspective all they are doing is once again instilling fear. Of course I don’t want such a vile creature working with my child but at some point I have to trust that officially channelled justice will prevail.

At the moment I am in a position where I question my children’s every move mostly because I am swayed by the voice of the masses; should I let them out independently? Should I let them go on school trips? Should I let them use social media or even the internet in more general terms? Should I trust the police or the NHS despite knowing in my heart of hearts they are working as hard as they can with the resources they have been given?

I was really looking forward to my eldest daughter’s first Easter holiday at Secondary school knowing she could make independent plans for the first time. As it stands, she is going nowhere because no universal consensus has been reached about where it is safe for her and her friends to go!

It has become impossible to distinguish fact from fiction and to know who to trust….I question whether, if we continue to let what we read online cloud our judgement, we are spiralling towards a very dark and dangerous dystopia.

Today is International Epilepsy Awareness Day. Its purpose is to raise awareness, share stories and start conversations about epilepsy.

I’ve been trying to compose something specifically for today for a few weeks, saving various gifs and motivational posts from the epilepsy forums I frequent, looking for things which really resonated with me. I didn’t find anything perfect but there were a few ideas which I found I could relate to.

The first is something called the spoon theory, which I’d never heard of but was created by a lady called Christine Miserandino (a professional blogger, speaker and author) and relates to chronic health conditions. The idea is that everybody has a finite amount of spoons available to them during the day and each spoon represents a unit of energy. We all have to ration out our spoons to make sure that we complete the things we need to do each day. The catch is, that for someone with a long term health condition doing everyday things uses a lot more spoons than a healthy person, so you develop a constant awareness of how many spoons each activity is going to use and you have to learn to ration them accordingly. The other catch is that if you have a chronic condition borrowing spoons from the following day will have a bigger impact on you than a healthy person, its much more difficult to recoup those borrowed spoons and the consequences might mean it just isn’t worth it.

This sums things up perfectly for me. It’s not so much that using too many spoons drains me of physical energy and often it doesn’t even make me emotionally exhausted, it just sets off an electrical storm inside my brain which is difficult to recover from, so I have to decide whether using those spoons at that specific time is something I want or need to do. I have good and bad periods during the day so I try to get things done during the good times (for example I cook dinner after the morning school run as for reasons unbeknown to me this is a good time to use spoons) but I am guilty of trying to squash things in during the good hours. Most days are a struggle between making the most of good hours and not wanting to ruin them by doing things which I know don’t make me feel great.

Another point which features a lot in epilepsy gifs relates to judgement from others; pity or fear that people think you are lazy. I personally don’t fret over people thinking I am lazy, I’m very vocal about my condition so most people know exactly why I’m not doing the things which I used to do. I don’t think most people who know me do think I’m lazy (and to be honest I don’t mind a bit of pity) but despite this I am still very hard on myself and can’t quit the need to prove something in everything I do. I doubt anyone notices if I do the school run with no make-up on and I’ve always maintained that I’ll happily go out barefaced anyway, but all of a sudden it represents so much more to me than make-up. It’s a daily battle with the mascara wand or the blending sponge to see if I can co-ordinate enough to apply it. When it doesn’t work out and I end up taking rescue medication to calm my seizure down it just becomes another stick to beat myself with, but I can’t quit this mentality. I was very against the whole concept of being an epilepsy warrior but I guess this demonstrates I have unwittingly become one.

Empathy and support are also big parts of raising awareness for people with epilepsy and for me these have come in all shapes and sizes. People that I don’t (or didn’t) know very well have been so helpful. They have popped up in online communities, by offering practical help with my children or just going the extra mile to keep me company during the day.

On the flip side some others have been surprisingly absent; lack of contact with my colleagues has been glaringly thin on the ground. Yes, I get you can’t pick the people you work with and they aren’t always ‘friends’ per se but realistically you do spend more time with them than your family and so not hearing from them at all has been pretty gutting. I don’t have contact with them via social media so they have no idea how I’m doing and no one has really asked. I can’t change my own personal situation but I hope reading this part might make you stop and think; long term health conditions aren’t contagious and checking up on colleagues isn’t going to affect your own performance. I can’t honestly say I would’ve been empathetic to a colleague in my own situation before but it would be nice if reading this makes someone else do it.

I think this blog has helped break down barriers by saving people having to ask the obvious questions, but I still want to reassert that I will always accept company. Some days are really long and lonely and if I can I’m happy to come and fold washing with you, or walk your dog with you or meet for coffee. I don’t like the idea of being a drain and this is why I don’t expect anyone to disrupt their own lives. I’ll come and do your daily mundane crap with you, it’s fine by me!

The final thing I chose to reflect upon today is personal acceptance. I’ve started going to a group therapy mental health course run by the NHS for people with long term health conditions. Despite its good intentions it is mildly hilarious as it’s a room full of the most bitter people I have ever met. Lots of them are in continuous pain and some of them seem to think it’s a forum for moaning about how the NHS has neglected them or let them down (an NHS run course is probably not the best vehicle!). It has very strong ‘single parents alone together‘ vibes (About a Boy reference) and I’m not quite sure if a breakthrough is going to happen which will make the members see it’s value. Having said that, I don’t mind being there, it’s something to pass the time and the thing I’m hoping to take away from it is being able to cope better on the bad days. I still maintain that surrounding yourself with negative people isn’t always helpful but it has made me consider that things could be worse and lots of people have lived with debilitating conditions for a lot longer than I have.

I’m not sure if acceptance is easier to deal with if you are the person living with epilepsy.
My husband is still 100% convinced this will all go away if we push hard enough and I will bounce back in every capacity but for me this isn’t really the goal anymore. I’m not resigned to things staying the same but as time passes I have found that always hoping it’s going to change isn’t healthy or realistic. Fighting for change and constantly looking for ways out is frustrating and demoralising, the NHS are pissed off with me pestering them for further investigations and not being patient enough so I am trying my best not to continue pursuing this path so relentlessly. I’ve also had enough of feeling like a human guinea pig!

Part of the group therapy sessions involves setting a goal for the end of the course. This caused universal outrage as the vast majority of the participants (who hadn’t really grasped the concept of CBT) thought it was a ridiculous question since all everyone there wants is to get better, which failing a miraculous intervention, isn’t going to happen. I think the intention was to find something which isn’t affected by your condition to make you feel better about yourself.

It’s supposed to be achievable and measurable (like losing some weight). I’m not sure how well it’ll be received when I tell them I’m still not letting go of my PhD by the time I’m 50 dream. I still haven’t quite figured out how I’m going to finance it, I don’t know if the sympathy vote extends as far as crowd funding a qualification which I have no use for other than to prove to myself that I can still achieve something big despite epilepsy screwing up my other dreams 😉

My intent today was to remind you to think about what the reality of all these designated days (Down Syndrome awareness and Alzheimer’s awareness day to name a few) mean for those who are suffering. Raising money is great and may help contribute to further research and cures but it’s also about connecting with the people around you who are suffering. Try and do something, however small to check in with those people when you can. I will be the first to admit that, although I’m not embarrassed by my condition and I’m happy to talk about it, I do find it hard to reach out and ask for help or support.

…..gone tomorrow.

Okay, so this just happened!

I haven’t written much about my epilepsy for a few weeks now (feels like months to me as every day feels like a week) but in short it hasn’t got any better. The medical side is awful, I’ve had seizures for 21 days of the the 25 so far in February, new triggers keep springing up and old ones resurfacing and in terms of managing daily tasks some days I’m barely coping. It’s depressing and crap but mentally I’m actually feeling relatively good. As the optimism of those closest to me has waned it’s actually made me feel a bit stronger. Most things are a struggle but I won’t see a neurologist until May so I have to manage my own expectations.

I’m reading another medically themed book at the moment called ‘In Shock: How nearly dying made me a better doctor’ by Rana Awdish and as has become the norm I’ve found ways to make it relate to me. She writes about compassion in the medical profession and about how as part of her own unexpected near-death experience she realised that all good doctors are trained to suppress their compassion for patients and in some ways dehumanise them.

I completely understand why this is necessary, to be emotionally attached to patients (especially as a trauma surgeon) would be ruinous to your mental health but she does make an interesting point. My case makes for a lovely research paper but no-one really has time to assess the day to day impact of it on my life. They have to close this part of their minds in order to do their jobs.

Over the last month I’ve spent so long waiting for calls from epilepsy nurses to be returned or emails to my consultant replied to, as things have gotten progressively unmanageable for me and my husband has been very frustrated.

I’ve learned to rationalise that I realistically am not that much of a priority to them. Not because they don’t care but because I’m not, at present, in grave danger. They deal with patients every day who lose consciousness as a result of seizures and suffer brain damage or who are involved in accidents as a result of seizures. They (in the consultant’s case) are probably giving lectures, running clinics and carrying out research. I wish I was a priority but pragmatically my situation isn’t life threatening.

Which brings me back to the haircut. It is the job of medical professionals to save lives but not to save my ‘life’. I have to do this myself. There is more to medicine and repair than physiology and I have to keep the other parts together myself as the NHS is just too underfunded to make my, at times devastating but not critical, situation a priority.

My hair is still a major trigger and this has recently resurfaced and become worse. Washing, touching, brushing, typing up all cause seizures. It’s horrible and the stress of knowing hair-wash day is coming also triggers more seizures. So I’ve tried to simplify things. One of the epilepsy nurses did suggest trying to avoid triggers is the best way to deal with reflex epilepsy and whilst I did explain that’s near on impossible when most of mine are everyday things, after a suggestion from my husband and observing a few women who looked quite cool with cropped hair I decided I had nothing to lose.

It wasn’t intended as a message of female empowerment, it was mainly just convenience (less hair, less contact required) but I suppose it is quite liberating. I feel quite sad that women with cropped hair are usually classified as having cancer treatment or being lesbians (no judgement of either but it is sadly true), I hope I can break that stereotype a little bit and I’ve partly done it because I have so little control over many things at the moment it meant I could do something on my terms.

I know it’s not for everyone and I’m sure many people will hate it (my children are horrified and really embarrassed) but I’m beyond caring. I have to do things for me sometimes. I’ve never been very attached to my hair, it’ll grow and in the meantime I can explore different very short hairstyles. I’m pretty comfortable with being a little edgy but I will have to remind myself to pile on the make up as I feel like I need more to keep up a modicum of femininity (classic stereotype I know, sorry).

I was also mildly amused as I had it done in a barber shop (I’d researched and found this was the best place to go for super short women’s hair) and not only were they really pleased to be doing it, they also clearly have NO idea how much women’s hairdressers charge; cheapest complete restyle I’ve ever had!

Next hurdle is my teeth; tooth-brushing is a pretty common reflex epilepsy trigger and it seems to have added itself to my list recently. My budget doesn’t stretch to replacing all my teeth with dentures so I’m going to have to find some other work around. Watch this space.

I’m aware this topic is a bit TED talk but that’s fine by me, and if anyone who reads it would like to conveniently put me forward as a TED candidate I’m game. I LOVE public speaking, the sound of my own voice and research so it’s pretty much my dream job!

Seriously though, the inspiration for this post came today as I finally got around to completing my Personal Independence Payment application form (PIP). It’s the new version of Disability Allowance and I applied a few months ago as a friend of mine with epilepsy recommended it to me. I’ve nearly thrown it in the bin several times, partly because it’s 40 pages long and partly because after skim reading it I just didn’t think it was worth my effort because I wouldn’t be eligible.

Things haven’t been going so well epilepsy-wise (no worse really but also no better which was kind of the game plan) so today I bit the bullet, visited the Citizen’s Advice Bureau (again a first for me) and then went home and completed the form.

Time for a dose of honesty; the whole process didn’t sit well with me. The concept of benefits makes me feel uncomfortable, a bit guilty and simultaneously grubby and like further confirmation I’m not contributing enough to society. Having to acknowledge I need to use the word ‘disability’ to access what I’m possibly entitled to also feels pretty demeaning to me. Both of these rude awakenings made me realise, despite my compromised position I’m still massively stigmatic. I don’t like the word disabled and I don’t want people to think I am disabled. Strangely enough I think part of the reason Disability Allowance was changed to PIP is because the terminology was considered outdated yet the first question I had to answer was “do you consider yourself disabled?”

Ironically I don’t like the physical connotations of the word which is ludicrous as this is exactly my problem!

Acknowledging my own stigmas made me question why I/we (as I’m sure I’m not the only one) possess such behaviours. I don’t believe it’s a genetic defect as I refuse to believe that anyone is so altruistic that they’ve NEVER made a judgement about someone. For me it fits more neatly into the ‘nurture’ camp; that is, it’s a learned behaviour (I haven’t studied anthropology or sociology to any great depth by the way, this is just my opinion!).

Most of the people who read this blog would be within the age bracket where as children our parents would have told us ‘not to stare’ if we saw someone in a wheelchair or who had perhaps lost hair due to cancer treatment. I don’t think they were being intentionally discriminatory but I do wonder if it was maybe a kind of Darwinian Survival of the Fittest mechanism which had filtered down through generations so that if we didn’t look directly at them, we wouldn’t become like them.

One way to explain stigma is ‘as a mark of disgrace’ and I certainly don’t think our parents had this intention but I do think we were probably raised in a ‘them and us’ environment. An extreme example, but the treatment of gay men in the 1980s at the outbreak of the AIDS epidemic fits the bill very well; these men completely unwittingly contracted a virus which was previously unheard of through no real fault of their own (as you can’t act to prevent something if you don’t know it exists), yet they became labelled as universally lewd and massively stigmatised.

Do we develop stigmas because it helps us to feel secure about ourselves? If this is the case then what happens when that blanket is pulled away? I am certainly no angel and I definitely make snap judgements all the time but I do openly encourage my children to ask questions if people look and behave differently; it’s usually guided by me (as in I ask the questions for them) but I hope in time it will mean they mature to be less fearful of disability and less judgemental, as if you know the reason behind someone’s behaviour then you can understand it better.

As reluctant as I am to be given it, for me the benefit of having the label ‘disabled’ is pretty clear cut; it gets me money to help make my life a bit easier. But what about the grey areas for other people? Before qualifying as a mainstream class teacher I worked for six years with children with additional needs in different settings. It was a job I loved and found very rewarding but again if I’m honest I did always have a ‘them and me’ mentality (as in, I’m not like these children and I never will be). With the very best intentions I did treat them differently. Disability was very black and white.

My question is; does having a specific label help children with additional needs? I’m not going to go down the EHCP route here (this is the formal route by which children with additional needs are declared and shows how they are provided for in education and beyond if necessary) because it’s pretty complex. I wholeheartedly acknowledge that for many conditions (dyslexia for example) a named diagnosis is absolutely helpful as solutions are available which make learning more accessible.

But what about the child with the non-specific additional need; the slow learner? The ones we don’t have the answers for yet? One would hope that he will be educated in an inclusive environment, given differentiated work where he needs it and also be allowed to mix with his mixed ability peers. Thankfully, this is usually the case. But does being treated differently help him?

In Utopia would his life be better if, with infinite resources, we could genetically test these children and spend time studying every nuance of their development from birth to work out exactly why they are different? If we could give a label and a diagnosis to every slight from the perceived norm in personality, intellect or physical being would we be more accepting? Would society be more inclusive with the fear of the unknown removed because we would all know exactly what was happening? Would we stop stigmatising because we understood better or would we simply create a hierarchy of the diagnoses and decide which ones scared us the most?

Who would such a solution help most? It seems we have come back to ‘them and us’ again……..I don’t know the answer to this question.

As a closing remark, I think that, no matter what kind of spin you put on it, removing stigma is a very hard habit to break.

This is just a quick (famous last words) update post to go over what’s been happening since I was discharged from hospital on the 16th January. It’ll also do me good to hopefully remind me that it hasn’t even been two weeks yet to keep my expectations in check!

First, the positives: I had about ten amazing days, felt really good, had virtually no seizure activity, mood has been brilliant and even made it through the most difficult time of the month unscathed. I’d also found a renewed sense of enjoyment in ‘just being’ without feeling like a failure. This was all massively helped by feeling quite competent at doing minor things with a slow and cautious approach.

I also joined Slimming World last week and it has taken up a surprising amount of time talking about, thinking about, preparing and eating food! This is a good thing (if incredibly boring) as I feel quite virtuous from not putting crap into my body for a week and I lost 5lbs at my first weigh in this morning.

Now the ‘not so goods’: I took the drug the hospital gave me for 5 days to use during menstruation like a good patient and I’ve basically been a bit screwed ever since. I was fine during the five days but since stopping I had two days of feeling like a zombie; literally zoned out and wiped out, which sadly included my birthday (it is only a day I know!). I found out a bit more about how powerful benzos (the drug family they come under) are and how hard withdrawal can be (although on a low dose this wasn’t expected). I’ve then gone on to have seizures that have left me bed bound but conscious the past two mornings and had to resort to taking more of these crappy drugs to stop them in their tracks. Not nice reading I know but this morning was especially hard as I didn’t want to take the meds but was stuck between resisting them and leaving my ten year old to walk herself to school because I was too busy having an uncontrolled seizure to get her there. I know it’s crap and maybe a bit shocking but it’s the reality of epilepsy I’m afraid.

I’m drawing on all my reserves of patience and so determined that this isn’t going to bring me down but despite a great start it’s now not going to plan and I’m pretty scared. I pop the pill and within 30 mins all is rosy and I can function but this isn’t an ideal solution when you know the withdrawal from this stupid medication is akin to heroin. But hey, sometimes life gives you lemons (hence the picture)……..

To lighten the tone I have two anecdotes from the last week. Please bear in mind my world is pretty small at the moment so these might not actually translate as funny to people who have normal lives!

Firstly, my longer term project is supposed to be writing a book. I’m not a procrastinator at all but I’ve been as busy as I can be with life admin and book writing (I’m assuming having never written one) is a lengthy process. Anyway, when I opened my birthday presents on Friday morning Mr. J had bought me a book called “How to write a non-fiction book”. He’s given me a few gentle reminders since I left hospital (it’s been TWO WEEKS remember people!) but it appears now subtlety wasn’t working so he’s gone for a more direct approach.
It reminded me of the Friends episode where Joey has no job so decides to write a play-script and Chandler then chastises him every day for not being committed enough to it. I will begin my research this week dear, I promise!

The next mildly amusing anecdote relates to a Slimming World recipe chicken dopiaza which I attempted this week. Everything has to be cooked from scratch (great and very healthy) and you can’t use curry paste, so they are very dried spice heavy. I’m not sure if something got lost in translation but the recipe clearly called for two cinnamon sticks broken into small pieces (not ground or left whole). I did this anticipating that possibly the bits of wood would break down (having never seen a recipe which asked for this before). They did not break down, they did not become anything other than small bits of wood permeating the whole curry and we were left picking bits out of our dinner to build Blair Witch/Macca Pacca- esque piles on the table next to our plates. I soldiered on bravely but Mr. J abandoned his dinner after a while as he couldn’t cope with any more deconstructing his food. He might lose weight by not being able to eat the food I cook alone.

I’m useless at keeping secrets but I am going to try and keep quiet about my (as yet unwritten in any shape or form) book but I will provide updates with regards to progress and let you know how I’m getting on (hopefully better) with my medication increases. Thank you as always to all those who support or comment on my posts, it really does keep me going (because I’m a shameless attention junkie).

I really don’t like motivational quotes, I do try (and often fail) not to be bitter but over the last six months seeing posts declaring that “you can achieve anything with the right attitude” or “there are no limits to what you can accomplish” have made me increasingly pissed off. I am hard-working and goal orientated but these statements just aren’t always true, sometimes you just can’t fight because there is too much going against you. These airy fairy declarations are too generalist in my cynical opinion. That being said I’ve been determined to get the title of this post shoehorned in somehow for quite a while.

It is supposedly an old Spanish proverb (I haven’t confirmed the provenance) and translates to ‘a life lived in fear is a life half lived’. I chose it purely because it’s featured in my all time favourite film Strictly Ballroom; a ridiculous Baz Luhrmann spectacle set in the garish world of Australian Ballroom dancing. I’ve used it in this post because I have a diagnosis! Things are not going to be fixed instantly but at this moment I feel like my outlook has changed so much. To know what is happening to you and why takes away so much of the fear. My life might be half-lived in practical terms for a while yet but for the time being the fear of it has abated considerably.

Here is what has been established as a result of my hospital stay:

I’ve been diagnosed with a really rare form of epilepsy called reflex epilepsy, the form I have is so unusual that the registrar assigned to me actually called it “vanishingly rare”. Despite myself this actually makes me quite excited, surely it’s more interesting to be some kind of medical marvel than not?

It’s not what I was told I had twenty years ago (which was a much more common type) although to be fair the seizures which it causes and the treatment aren’t very different so it is reasonable to see how it could’ve been missed, especially since it is such a rarity.

For me, my seizures are triggered by thinking and something called praxis (in short this is applying something you have learned in a practical way). If you’ve twigged what this means it can be pretty much anything in everyday life…and even thinking about it can be a problem. This includes drawing, calculations, playing games, abstract reasoning, making decisions and higher level, complex cognitive functions (kind of my bread and butter!).

If this hasn’t quite made sense, what I mean is pretty much anything using your hands and brain OR thinking about doing that thing can potentially set my brain off on a misfire. It’s different from stress causing epilepsy as it’s not the stress of doing these things which causes the activity, it’s the unconscious muscle memory (so using my hands and arms is all it takes even with simple tasks).

On the plus side I DON’T HAVE ANXIETY! This has really taken me some time to get my head around but all the symptoms of anxiety were actually seizures! The neurologist couldn’t hammer this home firmly enough for me, when I was describing situations such as “I’m scared when I’m in the shower” she would just repeat again and again “no, you were having a seizure”……..they know this because it was all picked up on the video telemetry. So when I was doing the memory tests and panicking that I wasn’t jerking I was actually having seizures!

I appreciate it’s not for anyone but if you’d like to read more about reflex epilepsy I’ve given the link for a medical journal below on the subject (you need to open the pdf at the bottom for the full article)

https://www.dovepress.com/reflex-epilepsy-triggers-and-management-strategies-peer-reviewed-article-NDT

Despite it being rare and so strange sounding the treatment is actually pretty straightforward. It responds well in most people to normal anti-epileptic drugs. The levels of my current drugs in my blood were shockingly low (I’ve never had them checked before so this could be the cause of the new issues) so first step is to try increasing these. This takes a while and I need to be mindful of side effects but it’s the simplest starting point.

I’ve also been given a shorter term drug to use on my most challenging days of the month and we have discussed the possibility of putting me on the pill so I won’t menstruate at all or me taking progesterone. The progesterone option comes with pitfalls though including a teeny tiny beard!

It terms of what triggered it in August I don’t think we will ever really know. It does seem strange that I’d spent four years doing so many of the things which would exacerbate it with no consequence for it then to suddenly go haywire. Possibly my thyroid imbalance (which although minor) could have sent things out of whack, a new hormone imbalance again could have been the culprit as part of the ageing process or maybe latent stress which had built up over the past few years.

Going forwards I don’t know what happens next. I have to make some pretty serious decisions employment-wise but I’m okay with that. I feel like my current job would be like a diabetic working as a sweet taster; sure if you’re careful you might be fine and the drugs might keep you ticking over but I’m not sure it’s worth the risk.

I don’t want pebble jars or touchy feely shit, I want to do practical things. I want to run to the top of a huge hill again in the boiling sun or the pouring rain and to be able to dance with my children. These aren’t goals yet but I feel like they are closer to being possibilities than they have been thus far.

I’m also going to join slimming world. I’ve gained two stone as a result of medication, lack of exercise and pity eating. It’s something I can control outside my condition so I don’t mind setting that kind of target. Hopefully it will help rebuild my self-esteem.

I know after suffering ‘heroin addict going cold turkey’ symptoms from the medication increase last night that it’s going to be a long journey but maybe one day I will be able to show you my Paso Doble.

For now, what I have is enough.

I’m “lucky” enough to be spending the next two weeks staying at a specialist epilepsy unit for detailed investigation into what’s gone wrong. I’m not looking forward to it on the grounds that I’ve never left my family for anywhere near this long before and I’m also nervous about being in a strange (and probably upsetting at times) setting without a familiar face. However, once again I’m extremely grateful that the NHS has afforded me this privilege. I’d be lying if I said I didn’t have to battle for it, which makes me feel sorry for the people who don’t have the ability (for whatever reason) to fight but nevertheless I have got what I so desperately need and I hope it gives me some answers.

I’m going to update this post every day so I can share my experiences and feelings.

The slight pout in the photo is because I know I look like shite so I’m trying to claw back some dignity with the only resources available.

Day one-admission

My first thoughts as we approached were akin to those horror movie scenes when you see a female lead running blindly through the darkness in her nightdress frantically banging on doors for help, there is nothing terrifying per se as to see but it’s a huge sprawling estate which is very quiet in the middle of nowhere…..a little bit one flew over the cuckoo’s nest and the kind of place you feel like you could be dropped off and then never collected from. During one form filling exercise a nurse actually asked me if I have a history of absconding from hospital which 1) made me laugh and 2) then planted a seed that I should try to see what happens.

Artistic license aside the centre is actually very nice, clean, bright and the staff are friendly. The only thing I don’t like is the eerie silence. Before I arrived I was terrified I’d be in a ward but now I’m in a private room (no special treatment it seems most of the residents are) , I feel quite isolated. There is a communal day room and dining room but no one talks so I keep retreating back to my room.

I’m also attempting to use this as an opportunity to lose weight or at the very least shrink my appetite and after one recommended NHS serving meal I’m bloody hungry. It makes you realise how unnecessarily large home portions actually are!

I’m terms of medical intervention, today I’ve had a full admission medical (muscle tone, ECG, bloods, reflexes etc.) and been through my symptoms and history with a nurse and then doctor. Not so keen on either of those, they seem to heighten my physical feelings and make me doubt my ability to coordinate properly.

Also not a fan of having my drugs confiscated even though I know it’s standard practice and I want hospital sides on my bed. This suggestion was met with derision by my sister who rightly reminded me I don’t have them in bed at home and I’ve never fallen out of bed so I’m panicking unnecessarily. She’s probably right.

Day two

Very much “we’re not in Kansas anymore” today, I had my first seizure first thing this morning, just the usual expected one but for the first time without my husband there. It was awful, he doesn’t do anything as such apart from ask if I’m okay, wipe away any tears and bring me tea afterwards but I felt so embarrassed here, the nurse was there but I asked her to turn the light off feigning sleep then laid and cried and jerked in the dark on my own. I’m hoping it’s just me acclimatising and once I’m more used to it I won’t send her away. I just felt torn between desperately needing company and wanting to seize in private because they don’t know me.

On a positive note I saw my consultant first thing this morning, which is so speedy and one of the massive advantages of this facility. My mind is muddled again now though as she has an uncanny knack for saying things I don’t expect to hear. Her feedback based on the information she’s been given so far is that EVERYTHING I’m experiencing (feelings, compulsions) are all caused by epileptic activity, rather than by my psychological response to things…….this has kind of blown my mind as it seems so strange that something which you think you are doing through “choice” (for want of a better word) is possibly just part of an electrical discharge!

I’m booked in for video telemetry on Monday (48 hours of video recording and electrical impulse monitoring) and she is looking for evidence of a pretty rare type of epilepsy. She’s reluctant to give me the details of the full name though as she knows that I’ll just spend my time with Dr Google researching it in the meantime (she’s not wrong!).

Diet update: I did not eat the bread and butter pudding at lunchtime and I ate my only treat sweets last night so it’s going to be a lean, mean weekend for me!

Days three and four (weekend)

I’ve combined these as it’s very quiet here at the weekends, which sadly adds to the sense of abandonment even more. I didn’t really realise how much humans need company before.

I experienced witnessing my first two seizures here yesterday which was inevitable but not too nice. It’s one of the weird things about epilepsy that you don’t really get much first-hand experience of what seizures look like. You can video yourself or watch YouTube clips but my personal preference (and I think others feel the same) is it’s quite unsettling.

The first was a very “laugh or you’ll cry” situation. I started a big puzzle in the morning in the day room but after about 2 hours it started to make me feel a bit weird (my coordination was starting to go) so I went back to my room for a break, then after lunch I went back to it and a young man asked if he could join me. I was chatting away and explained it has made me feel a bit seizure-ish in the morning and he expressed surprise and said ” oh, I didn’t know puzzles could do that! “…………ten minutes in he made a funny noise and I looked up to see him having a seizure! Probably not my fault but I felt guilty for my previous mention and have concluded maybe puzzles and epileptics are not the best combo.

The second took place overnight and woke me up as a girl in a room nearby was having a tonic clonic. Despite them being private rooms I was shocked at how loud everything is. It is a very quiet building so the sound is amplified but I could even hear every noise she was making, which as someone who hasn’t been a bystander before was pretty distressing. I’m actually surprised how resilient all the other residents are after seizures. Even my tiny ones (by comparison) make me so emotional and they just seem to take it in their stride.

In more mundane news I’ve eaten everything in the fruit bowl which is meant for all the residents (sorry NHS) and given reports about my bowel movements to three people already today (not through choice).

Sunday

I’ve moved into the room now where the filming will start tomorrow, and starting to feel uncomfortable about it. Weirdly enough it’s not the most obvious things which bother me (like getting changed, although they recommend you do this in the bathroom, where you aren’t filmed), it’s smaller things, like people watching me sleep. It’s very black mirror! Although the cameras aren’t on yet I was very conscious of them over my bed last night and dismayed when I realised I’d unconsciously picked my nose AND looked down my own top at my cleavage a few times within an hour.

Day five-video telemetry

Okay, I’m wired up. I was a huge teary ball of tension this morning and slept so badly but now the wires are on it’s not as bad as I expected. I’ve been told just to be normal for today and not necessarily do anything to cause seizures so it’s just me, my new hell-raiser hairdo and my bum-bag full of wires!

Today hasn’t been too bad, I’ve divided my time into sections like a castaway to keep me occupied and delighted myself by out -smarting the camera on a few occasions (simple pleasures for minds).

The only disappointment has been that I discovered I won’t get feedback on anything specific and it’ll all just be summed up in a consultants appointment at the end of the week. Again, it’s just a case of expectations but because I feel like an “island” in here it’s easy to forget you aren’t the only patient in the hospital!

I guess I just thought they’d come and tell me everyday “you pressed the buzzer five times and four of those were seizures”, I hadn’t factored in how time consuming processing all this information must be.

Day six

Morning update; I actually slept better than I’d anticipated considering I’m so wired up. I did manage to unplug the main umbilical wire during the night though so had to be woken by the nurse at 3am to have it fixed.

My hair is also a crazy matted asylum style mess already so I feel obliged to apologise about it to any visitors and to also explain away the marmite on my bedsheets which I’m worried people will think is faecal matter. Can you tell I’m developing a strange sense of pride in my surroundings?

I’ve just had the first part of my psychology testing, I’m not going to lie, I found it really upsetting. It’s only different types of memory tests (long term and short term) and asking you to recall number sequences and patterns, define words and stories, but personally my intellect is really important to me, so to feel it has diminished in any way would be heartbreaking. It feels really stressful when you don’t have a benchmark either, so I have no idea what most people get in these tests or whether I would be done better at them a year ago.

I then saw the psychiatrist; this made me feel a little bleak as well if I’m honest. She was very thorough and I think it’s the longest conversation I’ve had with a professional about this element of what is wrong with me, but the treatment options once again are so dire. We need to wait for the results of my video telemetry and if the seizure activity is epileptic then it will be treated with drugs and all is rosy (this takes time but it’s a known entity)……if nothing shows as epileptic then same old same old, I will be spat back out into the community and given the usual inadequate offering of mental health treatment, the very best case scenario would be a referral to one of UCLH’s psychiatrists for CBT after a seven month waiting list but even then it’s a six week course. I felt like she was reasonably confident that at least some seizures were epileptic but kept her cards close to her chest.

I could moan forever about mental health but it feels so pointless, if I had broken my leg I wouldn’t have a seven month wait for a fracture clinic, yet if I’m having seizures which are a psychological manifest of my brain (complex mindf*ckery basically) and which could kill me because I can’t mentally cope with them I will have to wait and wait and wait. I am so deeply saddened by this for myself and anyone else with mental health issues.

Tasks for this afternoon include doing the hair of a Girl’s World head and filling in a form and doing some sudoku all to try and induce some seizures. Fingers crossed!

Day seven

Not feeling so great this morning, felt really tired when I woke up, I think the sleep is poor every night but it catches up on me every few days.

I also feel really dirty and like I smell like cheese, not a fan of no washing!

The fire alarm just went off which made me very excited as I thought I’d get ten minutes of freedom, sadly you don’t have to leave the building for a drill.

Mid-morning I had another visit from the psychologist for the rest of my memory tests, it was crap! The final few things which should and would be massive triggers for me (writing number and letter patterns and organising complex shapes) and nada happened. I really cried as I’m now so worried that I’m going to be released and they will surmise nothing is wrong with me and I’m imagining the extent of how bad things have been. Bloody wrong time of the month ( mid cycle when things are best) and being stuck in this vacuum where my body isn’t responding to normal stressors because I’m not in a normal situation.

She assured me that it happens to loads of people in VT and I’m not alone but it still didn’t make me feel much better.

Evening update; I had some jerks (yay) and they found some activity yesterday. It’s a double edged sword as I feel a bit crap now but it’s what I’m in here for.

Day eight

Really not much to say today, I’ve had enough, my head is so itchy and a bit sore from the electrodes and I’m counting the hours until I’m free!

My only visitors are the people who bring me food and drugs (this sounds a lot more gangsta than it actually is).

On a bigger downer because I’m feeling ansty I’ve been googling catamenial epilepsy (when it’s related to female hormone cycle) and haven’t found anything positive. I read a medical journal article (never sure if these are reputable sources of information or not) and it doesn’t seem like there is a fix for it; there isn’t a wonder drug or a hormone treatment they’ve found to be definitively effective or any kind of gynaecological operation. Trying to have a bit of faith but it’s wavering a bit today if I’m honest.

Day nine – sweet freedom

Lots of much needed good news today; firstly my wires came off which was a bit sore as they remove them with acetone which stings more than a bit on skin which has already been aggravated.

Next I met with my consultant again, I sat outside and sobbed beforehand as I’d so strongly resigned myself to having something really obscure and untreatable so I was very pleasantly surprised.

Short version is I do indeed having epilepsy but the type was misdiagnosed twenty years ago. I’m going to write a separate post on the diagnosis so I won’t go into details here but I’m very happy to have answers and solutions to try.

Treatment won’t work overnight but there is plenty we can try, I’m staying in for four more days while they up the dose of one of my existing meds quickly (this is the reason lots of patients have inpatient stats here as they can make medication changes quickly in a safe environment).

It does require some patience as they can only make one change at a time to measure it’s effectiveness but for me the knowledge that I’m not going mad (even in the nicest possible way) and that there is some kind of comprehensive treatment plan feels like a total game changer right now.

I do have to wash my hair this afternoon which will probably cause a seizure but I’m going to try my hardest to hang on to the positive feeling in the meantime and afterwards. Edited to add; it didn’t cause one!

Rome wasn’t built in a day after all.

Day ten

Just a quick summary to round this post off. This stay has been wholly worthwhile for me and although uncomfortable at times the work of the neurologists here is second to none. I can’t stress strongly enough that people shouldn’t underestimate the NHS. I have been fooled into thinking private healthcare is the best option before and it’s simply not true. I think you just need your wits about you and to be insistent if you feel things need further investigation (one nurse told me this morning how shocked he is that GPs and even neurologists don’t put enough patients forward for this level of investigation because medicating just seems like the easiest option).

I don’t want to end on a downer but I’ve just been moved to a ward, it’s hot and smelly (not through lack of cleanliness, just through habitation) and I’m dreading it……but I have had 9 days in a private room so I understand my complaints aren’t really justified.

I’ve devoted this post to explaining the things I have tried so far to deal with my predicament. So far they’ve been sadly without complete success at this point in time (if I measure success as a complete return to ‘old me’) but they (in retrospect) have raised a few laughs along the way and maybe the journey is supposed to be part of the experience.

The first one is medication, I’m not going to explain what I take and why as far as prescription drugs are concerned as, to be honest, it’s a bit niche and boring but there are a couple of alternative resources I’ve tried which might be of more interest.

My first attempts at self-medicating involved coconut oil; the keto diet is a proven cure for drug-resistant epileptics but it’s pretty hardcore when used as a medical solution (extremely high fat; we’re talking pints of double cream as a snack, and low carb). I wasn’t ready to invest in such a drastic measure at that point but had read that using large quantities of coconut oil could provide some benefit (backed up of course by tons of glowing internet testimonials) so I persevered for two weeks with consuming about 8-10 tablespoonfuls a day, in tea, porridge and on a really dark day straight into my mouth off the spoon. I wouldn’t recommend it, in the long term it’s really not healthy and in that volume it’s just foul!

The other off the record ‘medication’ I use which is possibly in the public interest is cannabidiol (more commonly known as CBD). I was reluctant for a while as it felt a bit ‘naughty’ and on a more practical level I didn’t want any effect it might’ve had to muddy whatever my prescription drugs were doing or vice versa, but after a really crappy week epilepsy-wise I decided I didn’t have much to lose.

It’s poised in a really weird place in terms of treatment for conditions as the stuff I buy is completely legal (it contains well below the legal limit of THC, which is the part of the cannabis plant with psychotropic properties) yet I still get the impression I am buying into something only obtainable from the fringes of mainstream society. They sell it in Holland and Barrett but you can’t seem to actually find it there and the website I buy it from also seems a bit mysterious. I can only presume it is because no one is allowed to suggest that it has any kind of therapeutic benefit whatsoever……..I find it odd considering (without the THC) it’s pretty much supposed to do the same thing as a quack’s potion like Rescue Remedy. As far as I know no one gets shot down in flames for suggesting that might be ‘helpful’!

I’m personally still skeptical about if it’s actually doing anything for me, I’m happy to buy in to the concept of the placebo effect (although it’s not the cheapest of hobbies), my only concern would be how to do I then break the cycle? Am I going to find that I’ve become so reliant on the mental support I ‘think’ it’s offering that I don’t ever want to stop taking it? I’ve found since taking it that my emotional recovery time from seizures seems a bit better and my outlook is maybe a bit more positive but there are so many other mitigating factors I can’t honestly say this has been caused by the oil alone. I also don’t know how far you push the boundaries of that scenario without being ripped off, I could buy a stronger concentration of the oil (more money of course!) to see if I feel better still, I could buy an oil with THC present but again I don’t know how I would measure any improvement or what I’m even looking for.

For those of you who may have heard of the two landmark cases in the UK which resulted in the legalisation of medical marijuana, it’s unfortunately not as exciting as it seems (although of course it’s life changing for those involved). It’s not a cure-all for all epileptics; the two young boys have a very specific types of epilepsy and there is no medical evidence that it makes any difference to adults in clinical trials.

The medical professionals involved in my care so far have been suitably non-committal as far as advice or guidance with CBD is concerned. My neurologist said I can try it (it a rather deadpan way) which led me to assume she doesn’t think it has any therapeutic value and my GP looked a bit disgusted and horrified. It does make me wonder if and when it is brought totally into the public sphere for medical uses in all it’s various forms (for example in the format I take it as a mood support for cases of mild depression) how it will be treated. You wouldn’t expect a GP to look disgruntled when suggesting any other anxiety medication and if nothing else, the lack of availability of information about what it actually does is frustrating; the only support network exists via people like me who all want it to work (because they’re paying for it) or the people who sell it….nuff said on that front!

Moving on from my shady drug habit I’d like to explain a bit about the other avenues I have been exploring in an attempt to try and ‘fix’ myself.

I’ve been seeing a psychotherapist since early September and although this is definitely beneficial now initially I did find out that it is NOT the case that one therapist fits all. The first therapist I saw was undoubtedly qualified but I think she just had real trouble tapping into how I was feeling. Without dwelling on it I was a mess at the time, very confused about what was happening to me and how I should deal with it; but even to me it was evident that this was as result of my health issues…nothing else deep-seated.

I saw her three times and every time she persisted in picking holes in my marriage (this made me laugh but it definitely didn’t endear her to my husband) and she perceived this was the root of all my problems. She also suggested it was a result of repressed grief over the death of my father (9 years ago; I’m obviously sad and always will be but I haven’t had any issue with processing my grief) and used a kind of crazy VR headset made with her hands to demonstrate how I looked like I was “dead behind the eyes“……She also constantly stroked a tissue box on my her table to try and squeeze tears out of me. I didn’t hate her at all but I think our parting of ways was for the best.

My current therapist is much more suited to, and understanding of my needs. She is trained to work with people with long term health conditions and is therefore much better at tempering the frustrations which come with such a predicament. I’m not going to lie, I HATE the things which she makes me do. I have cognitive behavioural therapy which involves examining the behaviours that I’ve acquired and working to unpick them and remove them. This might sound a strange course of action for someone with epilepsy but it’s because the seizures I currently have are caused by trauma and stress….. I’ve given myself to all intents and purposes OCD. Small things happen to me which make me jerk (legit epilepsy jerks….cause currently unknown) and then my mind becomes stuck in a loop where it obsesses about those things and wants/doesn’t want to do them even though the outcome isn’t going to be good, so I get stressed. It’s her job to set me homework which makes me confront those fears and work with them. At the moment we are doing this with some trepidation until a neurologist has established how much epileptic activity there actually is, but it’s still very uncomfortable.

One of my biggest current phobias which hasn’t shifted since September is hair, I’ve never ever had this issue before, have no idea where it came from but it’s there. Washing it, brushing it, styling it, thinking about other people styling their hair, looking at other people’s (head) hair all cause anxious thoughts and more often than not cause some degree of seizure activity. So, in case you hadn’t guessed, lots of my homework involves dealing with hair….I have to wash my hair as much as possible, pushing the boundaries of how I wash it right into the “danger zone”, style my daughters hair and force myself to wear my hair down. I’ve been in situations before where I’ve had to fight the urge not to scream at everyone around me to put a hat on for my own psychological protection!

I can laugh at this and I hope others can too as I’m really okay about it, but because of the above my hair has been an unfortunate casualty of my desperate state of mind. Until about mid October it was pretty long (about elbow length) and thick but it was becoming increasingly difficult to cope with; I couldn’t wear it in any style other than a tight bun (even to sleep) or wash it independently and it had fashioned itself into a cross between Gandalf’s beard and a culturally misappropriate white dreadlock. Partly because of it’s mistreatment and through stress and medication lots of it was also falling out.

So I took drastic ‘Britney at her absolute worst’ style action and chopped it off, in a pretty literal sense; I couldn’t cope with dealing with a hairdresser and having to explain why I was jerking while he/she was cutting my hair and so I guilt tripped my very reluctant husband into cutting it for me with my haberdashery scissors. The whole experience was a bit reminiscent of when Phoebe cut Monica’s hair like Demi/Dudley Moore’s in Friends but it actually looks fine!

I feel like it’s been a win-win situation for the Jacobs family as it’s given Mr. J another skill set to add to his CV and it’s liberated me from having something else to stress about.

Therapy has also been a really positive experience for me, petrifying homework aside it provides a safe space to voice my thoughts, process how I’m dealing with things and frequently laugh about how bonkers I actually sound. We sometimes touch upon goals but at the moment it’s mostly about unpicking behaviours and learning coping strategies.

I also meditate a fair bit to try and still my mind. I don’t actually mind doing it but I do often feel like a meditational fraud (I’m not sure if imposter syndrome applies to everyone who meditates and they’re just not honest enough to admit it!). The breathing part is easy, in the right surroundings I can quickly isolate my breath now and channel my thoughts into concentrating on only that. I’m also adept at bringing them back when they wander, but I haven’t really managed to summon up any kind of deeper transcendental experience. I find the tutorials I use (and I’ve tried three different companies) a bit ‘samey’. I’m not sure if I’m expecting some kind of auditory guidance from a yogi that will take me somewhere special but thus far all I’ve heard are what amount to basic home truths, only spoken in a whispery voice with a bit of whale song in the background.

The last thing I’d like to talk about in terms of the avenues I’ve explored to make things better for myself are the people around me.

I must admit I’ve veered towards ‘gentle’ people outside my immediate familial circle because they don’t threaten my fragility; people who either have an understanding of what’s going on in my head or who don’t demand anything from me. I went back to work briefly in September and despite making it through three weeks it was so difficult to cope with how people saw me (as coping really well with day to day things) compared to how I felt (a wreck). It’s a bit like a personality transplant as I’ve always prided myself on my capability but since July I’ve felt better if people don’t expect me to be capable, and I also can’t recognise myself anymore when I am capable of something. So thank you to all the gentle people. I’m slowly becoming a bit bolder and have found a new BFF in the Pharmacist (as in literally the dispensing person).

I’ve also tried some face to face chat groups but so far haven’t really had any success. I had really high hopes for one run by an epilepsy charity in my local area but it wasn’t the right fit for me; everyone else who attended had complex needs in addition to epilepsy or as a result of medication or brain surgery. They were all nice people but when I left instead of feeling bolstered that I’d met some people who understood what I was going through it made me fearful that my own mental capacity would deteriorate. One of my friends told me she’s attended some group sessions at a local mental health organisation (where I’m also on the waiting list) and experienced some circle time running under a coloured parachute in the style of mother and toddler groups. As yet I haven’t tapped in to where you find groups of people who experience mental health issues despite being previously stable.

On a more positive note I have made a couple of ‘epilepsy friends’ via a Facebook group who live in the UK. It’s nice to compare symptoms, count the days seizure free together and commiserate when things don’t go to plan. It’s also crazy to see how the medical system in the US (lots of the group members are international) is compared to ours.

I must admit though that with the best will in the world, it’s sometimes hard not to feel resentful when things are going better for them than for you; when their weight gain isn’t as colossal as yours or they are managing to return to work when you can’t. It’s teaching me life lessons about learning to be supportive in ways I never thought I would need to.

Finally, the most recent ‘cat-skinning’ activity I’ve taken on is writing this blog……..my therapist was very excited when I told her what I’d done and I’m finding it a really positive experience. It’s so nice to have an occupied head again (I know it’s about epilepsy but in a much more constructive way) and to feel my synapses firing. I spend a lot of time thinking about future posts, titles and topics.

It’s also been so helpful in enabling me to make contact with people again, I’ve had so many nice messages and comments and it’s so useful being able to explain the whole picture in one place rather than keep giving people weird little snippets when I feel like communicating. I suppose it’s like getting everything off my chest, albeit in a very public forum.

Next step is investigating a formal medical diagnosis with medical professionals which I’m hoping will make everything clearer. Wishing you all a happy Christmas!