3

What next…?

It gets to the stage when you seriously question just how many times you can pick yourself back up.

10 days ago I was travelling home after spending the weekend with my oldest friend. My parents had kindly picked me up and we were driving north. A few miles outside of Edinburgh, I started to have a seizure in the back seat of the car. My head banged hard multiple times off the car door. I was taken straight to A&E where it took some time to persuade me to leave the car and when I finally did I started the second of the seizures. This time I thrashed on the gurney. Truthfully, I don’t remember any of this. I suspect the story I’ve been told has been softened up a little. I did spend 3 days in hospital. I did have 3 seizures and I did give myself a small bleed in my brain as proved by a CT Scan that I don’t remember having.

I was discharged from hospital a week ago. I don’t remember too much about any of that, but I do remember starting to feel really unwell as time was going on. When it became a bit more apparent to me that there was something not quite right with my face, I called NHS24 & was given an appointment at a hospital.

Long story, short. I have been diagnosed with Bell’s Palsy. Half my face is paralysed; one eye doesn’t close; my ears are constantly ringing and yet there is a sense of deafness in my right ear. I can’t speak very well. I can’t eat very well. And without putting too fine a point on it, I’m pretty scared.

Apparently, there isn’t really anything that can be done for Bell’s Palsy. There is a small chance that steroids can help if they are given soon enough after initial diagnosis, so I am currently on a high dose of them, but there are no guarantees. I’ve been told that it’s hard to go out with my face looking the way it does – reassuring! I’ve also been told to try to do it as soon as possible – terrifying! I’ve been for more scans, so perhaps that counts as being in public?! I’ve also got another appointment tomorrow, so maybe that is good enough to reinforce the “get out there” mentality?

A few weeks ago, I wrote about wondering whether I’d done any of “this” to myself. Here I am again. Where to go from here? At what point do I get to feel sorry for myself without inviting the comments about being a victim? Surely, it’s ok to feel a bit hard done by, no?

Epilepsy. MS. Depression. Bell’s Palsy.

Can that not please be enough? Please! Apart from the headaches and the pain, I feel a bizarre kind of emptiness. A sort of “what’s the point”? I don’t quite know the purpose of these struggles. What am I supposed to be learning? Isn’t there an Idiots Guide to… I can read instead? Who the hell have I upset so much that these afflictions are my punishment?

Ah, here they come. The tears. I can blink them away from one eye, but the other just streams. I know it’s going to leave my eye red, sore and swollen. Yet, there is nothing I can do about it. Just something else, that I have no option but to put up with. When does it end? When will it end? What can I do to make this all go away?

Yep, feeling sorry for myself now. Who cares? I’m not strong enough to take this and if I want to dissolve into buckets of tears then where is the harm in that? I’m not hurting anyone by doing that and maybe I just need to know that it’s ok not to be ok. Right? We get told that don’t we? That we don’t have to be strong all the time and that it’s ok to be scared sometimes?

So, here I am. Another affliction I can’t control. Another solitary journey. Another route I can’t explain to another and more feelings of inadequacy.

I don’t know how many more times I can pick myself back up.

2

What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.

2

Epilepsy and Castor Oil…

So, the waiting is over the EEG results are in. It was abnormal. So, the waiting starts again. Now I’m waiting for an appointment to go for a sleep-deprived EEG. Then I have to wait for the results, then wait to see the consultant, then do I get to make a decision? A sleep-deprived EEG is a new thing for me, so I have to see its introduction as a positive way in that it may help really pinpoint what’s going on in my brain. The part that makes me a little angry, is that it was apparently strongly suggested that I have one of these EEGs several years ago and I was never made aware of this. It, rightly or wrongly, reinforces for me that my epilepsy does not seem to have been taken as seriously as it could have been. I hope that changes.

Anyway, I digress.

Someone once told me he could “cure” me by putting a castor oil pack on my stomach. Ludicrous I thought and said! Or words to that effect anyway…

The theory behind the castor oil cure is generally attributed to Edgar Cayce, who believed epilepsy was caused by lesions on the lacteal ducts in the abdomen. He believed that if hot castor oil was applied regularly to the stomach, then the combination of oil and heat would cure the lesions and hence stop the seizures. Cayce was an American mystic, who was believed to possess special abilities in healing, amongst other things. He is often quoted in the field of alternative healing. Castor oil is often used as a massage oil and is credited with many health benefits. I’m not so sure that it can cure my epilepsy, especially if my epilepsy is genetic, but I do appreciate the benefits of a good massage!

For centuries doctors, psychiatrists, philosophers and mystics have tried to pinpoint the causes of epilepsy. In 1825, two French students of psychiatry, Camille Bouchet and Jean Baptiste Cazauvieilh, tried to statistically establish the influence of heredity on the condition. They found that out of 110 epileptics, 79 had no relatives who were afflicted with any form of nervous disease and 31 who had a family history of epilepsy, insanity or “hysterical relatives”. Bouchet and Cazauvieilh also tried to determine causes of epilepsy in 69 patients. They found and published that while 26 of the patients had an unknown cause of epilepsy, a staggering 21 had Fright as the cause, 10 Sorrow and for 3 patients, well, their epilepsy was caused by Masturbation! A second set of stats published in 1836 by another French clinician found similar results in 67 patients. Fear was the cause attributed to 35 patients, Drunkenness caused 6 cases, Debauchery another, while Wrath and Misery accounted for 2 cases each! Fear or fright is an interesting one. In the early 1800s, it was believed that if a pregnant woman witnessed a seizure, then her baby would be born epileptic because of the fright the mother got.

The 19th Century was, what is referred to as, the Golden Era of French medicine and it was Jean-Étienne Dominique Esquirol, who gave us the terms Grand Mal and Petit Mal to distinguish between the different seizures witnessed. Bouchet and Cazauvieilh were both students of Esquirol. It’s interesting that these terms are still used today to describe seizures along with Absences, which again has its origins in the French language and can be attributed to Esquirol, I believe.

Epilepsy has been around for as long as man. Indeed, it’s been written about since at least 2000 B.C. when it was attributed, in Akkadian texts, to the Hand of Sin brought on by the god of the Moon. Babylonian texts dating to 1790 B.C. recorded that any slave sold that displayed symptoms of epilepsy, could actually be returned to the seller and the money paid refunded! St Valentine, yep, him of Valentine’s Day fame, is probably the best known of the Patron Saints of Epileptics (apparently there are about 40!). He is also the Patron Saint of Love, Lovers, Young People and Happy Marriages. He was beheaded in 269 A.D. on, yep, you’ve guessed it, 14th February…So, epilepsy has been known about, talked about, studied, feared, reviled, stigmatised, misunderstood, written about and lived with throughout time. Epileptics have been possessed by demons, considered imbeciles, regarded as insane and generally maligned since time immemorial and in the grand scheme of things, people’s perception of epilepsy and those who suffer with it, has only started to change relatively recently.

It’s only taken 4000 years of the written word to get us to this period of enlightenment. Wonder what the next 40 centuries can bring…

1

Epilepsy and Words…

Busy busy week, not had much time to write!

There’s been a lot of talk lately as to how epilepsy should be described. Is it a condition, a disease, a disorder or something else? The International League Against Epilepsy, this month, classified epilepsy as a disease. The new clinical definition states that in medical terms epilepsy is a disease. It chose that term because of the range of health problems it covers and the implications of a long-term presence. ILAE didn’t think describing epilepsy as a disorder quite covers the seriousness of epilepsy. Well, it’s caused a bit of controversy and I, obviously, have an opinion about it too.

Disease means, according to my kindle:

“A disorder of structure or function in a human, animal or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury”

I’ve never felt the need to check disease in a dictionary before because I thought I knew what it meant. I always always always associated the word “disease” with an illness that you could catch. So, I’ve never described my epilepsy as a disease, because you can not catch epilepsy. Having read the description, I now understand why the ILAE would describe epilepsy as such and am also slightly humbled that I don’t know what I think I know about an everyday word. A lesson to be learned there. So my initial bristling at being described as having a disease has subsided, but I doubt I’ll ever be able to call my epilepsy such. I don’t like “disorder” either. To me, that makes me sound dysfunctional and I may well be that in certain aspects of my life…I’ll get to that later, but I don’t think of my epilepsy as a dysfunction. To me, “condition” is the way I describe it. It’s not an illness, although it produces effects that are illness-like….headaches, extreme fatigue, confusion etc.

I suppose if I’ve given disease the kindle treatment, I should do the same for condition.

“The state of something, esp. with regard to its appearance, quality or working order….a person’s or animal’s state of health or physical condition”

Bloomin’ heck, I don’t really like that either now I’ve seen it!

So, what about “disorder”….:

“A state of confusion….a disruption if normal physical or mental functions; a disease or abnormal condition”

Well, that seems a bit more palatable to me. Isn’t it all just splitting hairs though? I mean women have colds, men have flu type thing? It’s all the same but different groups of people describe it differently and one definition makes it appear worse than it is…does it add weight to my argument that me stating I am epileptic is just stating a fact and not that it means I’m defining myself?

My trusty kindle describes epilepsy as a “disorder”. But this all got me thinking again about history. No kindles BC! No dictionaries either really. Just poets, philosophers, physicians, warriors, slaves….So, I’ve been doing a little bit of research into epilepsy and how it was viewed in antiquity and the middle ages.

Lucretius was a Roman poet and philosopher, the following poem is attributed to him and is about his observations of those with the falling sickness (not entirely sure it actually is a poem, but has a poetic feel to it)…:

And, moreover,
Often will someone in a sudden fit
As if by stroke of lightning, tumble down
Before our eyes, and sputter foam, and grunt,
Blither, and twist about with sinews taut,
Gasp up in starts, and weary out his limbs
With tossing around. No marvel, since distract
Through frame by violence of disease…

Confounds, he foams, as if to vomit soul,
As on the salt sea boil the billows round
Under the master might if winds. And now
A groan’s forced out, because his limbs are griped,
But, in the main, because the seeds of voice
Are driven forth and carried in a mass
Outward as by mouth, where they are wont to go,
And have a builded highway. He becomes
Mere fool, since energy of mind and soul
Confounded is, and, as I’ve shown, to-riven,
Asunder thrown, and torn to pieces all
By that same venom. But, again, where cause
Of that disease has faced about, and back
Retreats sharp poison of corrupted frame
Into its shadowy lairs, the man at first
Arises reeling, and gradually comes back
To all his senses and recovers soul.

It sort of describes pretty well what happens and proves that these episodes have been documented for many a century. They didn’t seem to have a definitive word describing epilepsy but there have been many “cures” and “treatments” well before drugs came on the scene!

In the 4th century, Diocles used blood-letting as a treatment. He also prescribed drinking vinegar and sneezing before going to bed! Yes, sneezing! I’ve made the wild assumption that sneezing would purge the body of phlegm and of course an excess of phlegm is not a good thing. Lovely. Praxagoras of Cos, from around the same time as Diocles was apparently a bit of a comedian. He shaved the epileptics head and applied a poultice of vinegar….and he also recommended the holding of one’s breath. My favourite of Praxagoras’ cures however, involved compressing the afflicted parts of the body with various substances, such as the genitals of a seal! Yes, a seal! Parts of the body were also burned and incised. Sounds like a bundle of laughs. I think I’ll take my chances with today’s pharmacology, thank you!

In the early Middle Ages, the “falling sickness” was also known as the “falling evil”. Latin texts from the 7th century say that people called epilepsy “demon” and “lunacy”. Isidorus, the Bishop of Seville lived in the 7th century and he claimed epileptics were often called “lunaticus”. Time moves on and us epileptics are associated with having “ecstasies, raptures and prophetic trances” and were hence thought to be possessed by a supernatural being. The centuries haven’t really been overly kind to the epileptic in terms of description and cure it would seem. It seems, to me anyway, that while in antiquity the disorder was recognised as being a disease, the treatment however wild and fanciful was actually hoped to be a cure; as time moved through the Middle Ages it seemed that epilepsy was no longer viewed as a disorder but as a sign that the afflicted was either a demon in disguise or a lunatic suffering from severe mental issues.

It’s the words that are the crux of the issue. The “falling sickness” is actually a pretty accurate description of what happens and does not suggest a failing of mental faculties. The “falling evil” – different matter altogether. Centuries later and it’s the same thing. There is less attachment in the modern world to an epileptic being some kind of demonically possessed psycho, but the argument is about the perception of what it actually means to have epilepsy.

As an extra thought to all of this, maybe we should all be more mindful of what we say to and about each other. I’ve tried to make light of the subject, but it is actually important. I don’t want to be described as a demonic lunatic because I have epilepsy. If you think I’ve done something that warrants me being described as such, then I’ll guarantee you that it had nothing to do with me having epilepsy.

As a further wee note, I’d like to thank Owsei Temkin for the enlightening text – “The Falling Sickness”.

0

Epilepsy and Medication….

Yesterday after my last post, my friend asked me about medication; does it/doesn’t it help. Medication is a hard one to talk about. So I apologise for the post so soon after the last one, but if I don’t get this out now, I’m not sure I ever will.

Medical advances since GGG Agnes was a sufferer are quite simply phenomenal. I recognise and acknowledge that. But, that doesn’t make what follows any easier.

I’m not going to name any of the meds that I’ve been on and here are my reasons why. Firstly, every medication, regardless of the illness or condition, has a different effect on every person. Secondly, I may take meds, but I’m not a doctor and not a specialist in the epilepsy of anyone other than my own. Lastly, I do not want to worry anyone that the effect a drug had on me, means they are going to experience the same, if they are on the same drug. That is simply just not the case. I will give an example of this. I am a female in my 40s, of a certain weight, certain height, who doesn’t smoke but does drink alcohol. My good friend has a daughter, S, with epilepsy, who is at primary school, who is a certain height ( but still growing), a certain weight (but still growing), doesn’t smoke and doesn’t drink alcohol. (I didn’t feel the need to check these last 2 facts with her parents but god-knows some kids are up to some wild antics these days!) So, it is hardly feasible to think that the same meds in the same quantities would produce the identical effects in myself and S. So, the caveats in place, here goes.

I began my battle with medication at age 17 and it’s continued for over 2 decades. Sometimes I’ve won the battle, but many times I’ve paid a high price and I think meds have the upper-hand in the war we’re in. Some sufferers are pretty easy to control with meds, some sufferers have part of their brain removed and consequently have an easier time with epilepsy, some sufferers can control their seizures relatively well with diet. I am “hard to control”. Some would say in more ways than one….

One of the hardest tricks with anti-convulsants, as with other meds, is getting the balance right for each individual. This is my story. The first anti-convulsant (a-c) I was prescribed was excellent at reducing my cognitive abilities and for causing damage to my reproductive organs. I was told several years later that, as a teenage girl, I should never have been prescribed them. Anyway, one of the side-effects was that my ability to feel pain was reduced. I could be found washing my hands repetitively under running boiling water, seemingly unaware of what I was doing and apparently unable to feel the consequences. I was in a zombie-like state for much of the time and I didn’t know I shouldn’t feel like that, I’m not even sure I knew I felt like that. I didn’t want to talk about epilepsy, I didn’t understand it and certainly wasn’t going to admit I was scared. I tried to hide it, I’ve never been sure how successful I was at that. Other side effects included weight-gain, increased irritability and terrible headaches. It had no apparent affect on the seizures. That drug, for me, was nasty. For others, it’s a god-send.

Fast-forward a couple of years, a few visits to a&e and a change in location. I was assigned to a new doctor. He was brilliant. He helped me begin to see that the medication I was on, was not the be-all and end-all. He explained to me that there was going to be trial and error getting the a-c balance right. He was the first person that I started to trust and then he moved away. I retreated again. I was on a different a-c by this time. I should maybe explain that many who suffer epilepsy are on a combination of drugs, I myself have only ever taken one type to “manage” my epilepsy. There were still side-effects. The worst for me was the weight gain. Like many I’ve struggled for years with my weight and this made the struggle harder but I had to pick my battles. The drug was “cleaner” than the previous one and after several attempts the amount required for me was found – to a certain extent anyway. What happened was that I started down the route of having seizures approximately every 6 months or so. This kind of reduced the fear that it would happen but it was by no means an exact science.

I stayed on this 6-monthly cycle for a few years. Each episode consisted of 2 seizures several hours apart. This was followed by the need to sleep for around 24 hours and then several weeks to shake the residual lethargy. Then the pattern changed. The episodes became unpredictable and I could no longer rely on fitting twice and then sleeping. The injuries sustained with each episode, to me, seemed to get worse. I have many scars and many chipped teeth. My confidence disappeared. I started to recognise, but not admit to, the depression. I was scared all the time. My partner used to say I was “scared of the day I never saw”. He was right. I still am. The answer at the time was to increase the dosage of the a-c and start experimenting with the omission of caffeine from my life. I should probably point out that at this time and throughout my 20s and early 30s I was teetotal. I’ve been through the removal of caffeine from my life several times for the sake of my epilepsy. In all attempts it has proved to be horrendous for me and positively hellish for those around me. Ultimately, caffeine and alcohol, drugs in their own right, have very little bearing on whether I will or will not have a seizure. So, the dose is upped, my weight is upped, my partner cheated and my confidence plummeted. I mention the cheating because sufferers of epilepsy, or any other condition, aren’t just dealing with their illness, they’re dealing with the other parts of their life too. (It might be worth pointing out that he didn’t cheat because I am an epileptic.)Stress is a factor in most illnesses and conditions. I was very stressed and not sleeping much.

Another episode sees me back in hospital. Restrained, because I tried to take out several paramedics and most of the nursing staff. It took several men to hold me down. The force of adrenalin gives the epileptic tremendous strength, it’s part of what causes the immense fatigue in me. It’s tiring all that jerking and fighting you know! In order to try to stop the almost constant fits I’d been administered another a-c, unfortunately this a-c provokes fits in me and things got worse. I tried to leave the hospital, yep you’ve guessed it, in one of those modesty gowns. I fought hard with the male nurse who tried to stop me and my escape attempt was foiled when I had another fit at the top of the concrete stairs that were to be my route to freedom. I didn’t stay at the stop of the stairs and the subsequent bruising was awesome. It could have been worse.

So, another drug, another protracted battle to get a dose that helped, I won’t say controlled because I remain, to this day, hard to handle. The depression, the fear, the weight – all on the up. The confidence plummeting and the acting that everything is ok being perfected. At least that’s what I thought. The veneer is wearing thin. Others saw that. I didn’t. More episodes followed, more trips to casualty, a different consultant, less friends but better ones. I didn’t want to take drugs anymore. I didn’t see the point. Were they reducing the number of fits or were they doing nothing at all in terms of my epilepsy? It was something I had to find out. The fits were becoming extremely irregular and more violent. I longed for the days when I could predict the pattern of the episode and knew it was only going to be every 6- months or so. I’m forever grateful that I don’t have to go through this multiple times a day, every day.

I slowly reduced the dose, my gp supported me, my consultant thought I was mad. However, it was my choice and I had to know. The result was that my fits increased. I knew then that the meds helped but didn’t completely control me. The depth of the darkness that followed that was simply horrendous. I finally admitted that I felt the depression but only to my gp. I couldn’t sleep and I wasn’t a functioning member of society. I withdrew from everything that I could and did the bare minimum to get by. I hated myself. It was 2 years after that, that I was persuaded to try an anti-depressant. I guess I’ll get to that later.

So, fast forward again. After the latest batch of fits before Christmas, it’s still being decided what to do about the meds. I’m waiting for another EEG to see what’s going on with my brain software. Then there will be another consultation as to what to do. There are 3 options. Do nothing; increase the dose; withdraw from meds. More decisions to be made, but I guess I’ll get to that later…Most epileptics I know have gone through a battle with medication. Some battles prove to be significantly worse than others. Unfortunately, the brain isn’t ready to give up all it’s secrets just yet, the genes that are involved in most cases are almost being pinpointed, but not quite. But ultimately, finding a suitable drug-regimen is not a simple one-size fits all. It is trial and error. As with life in general, some trials are more brutal than others and some errors have more significant consequences.

So, you have the basic outline of the battle. I’ve missed some of the parts out and compressed others. The war is dirty, played out in the confines of my brain and the consequences aired in public.

2

Epilepsy and Agnes….

Agnes was my great, great Grandmother. GGG Agnes was married with 5 children. She died in 1914 during a seizure. Does that mean I’ll go the same way? Not at all. What it does mean is that I am/was genetically pre-disposed to having epilepsy. I have the epilepsy gene if you like. What I did wonder is what having epilepsy was like for her. So, I did what any self-respecting researcher does and asked google.

Oh that was interesting. On an American site I came across the Harry Laughlin project at the Eugenics Record Office. In 1914, he published a Model Eugenical Sterilization Law that proposed to authorize sterilization of the “socially inadequate” – people supported in institutions or “maintained wholly or in part by public expense. The law encompassed the “feebleminded, insane, criminalistic, epileptic, inebriate, diseased, blind, deaf; deformed; and dependent” – including “orphans, ne’er-do-wells, tramps, the homeless and paupers.” By the time the Model Law was published in 1914, twelve states had enacted sterilization laws. I wasn’t sure I wanted to continue researching at that point so I think I’ll probably come back to it later. But, what I will say is that there are many tomes out there to read and study and get a background on the condition. Maybe I can become my very own epileptologist.

So, I was quite happily at work one morning. I used to work with pensions, although that seems like another life time ago. Anyway, I had a seizure. Now this was my very early 20s and I don’t really remember too much about it. Apparently, the big boss came over to me and tried to calm me down and he made the mistake of calling me “doll”. I told him, in no uncertain terms and with a few expletives thrown in for good measure, never to call me that again……he didn’t. Anyway, I was taken to hospital. I have no recollection of being there at all. I disappeared. Literally and, at that time, figuratively too. I reappeared at work a few hours later, minus my coat, my shoes, my bag and the friend who had come with me to the hospital. It turned out that the hospital discharged me, but didn’t tell me anyone was waiting for me, and I had a mild head injury. So, when I was told I could go, apparently that’s exactly what I did. I walked the 1.5 miles back to work from hospital. I don’t remember that walk at all. My brother and another friend were searching for me by car when they found out from my, by that time, frantic friend that I was not where I was meant to be. I don’t know how I crossed the roads. I don’t know how I knew where work was. I appeared back at work, announced I was tired, went to the bathroom and tried to take my clothes off so I could lie down there on the floor and go to sleep. Then I had another fit and back to hospital for me. My Dad was furious. My brother was furious. My friend was deeply upset. My workmates were worried. I was oblivious. My Dad wrote angry letters to the hospital. They wrote apologetic letters back. I retreated into myself again. I tried to pretend everything was fine, but it wasn’t.

At that time, I don’t think I realised that I was putting on an act for everyone. I don’t think that filtered through to me until a long time afterwards when I started accepting that I was suffering from depression and that the depths of the depression were linked to my epilepsy. I wonder how it was for GGG Agnes. I wonder what she knew about epilepsy. I wonder if she accepted it, the way I have and decided not to let it rule her life, like I have. I wonder how often she had episodes. I wonder if the one that killed her was her first as well as her last….According to her death certificate, she was alone when she died. I wonder if she knew it was coming. I wonder if she had auras. I wonder what she was doing. So much wondering, so few answers. The autopsy that was carried out on her body, confirmed that the cause of death was asphyxia during an epileptic fit. This made me wonder if she even knew she had epilepsy. Was it a family secret? A dirty little secret hidden away until I came along. Actually nobody told me that relatives had suffered with epilepsy. My parents knew but chose not to share it with me. I only found out because I started tracing my family tree. I’ve never asked them why they didn’t tell me. It would have been useful to tell the doctors, but I’m sure they had their reasons.

My friends are the best in the world and I’ve been exceptionally lucky with significant others’ too. One boyfriend picked me up and put me back together more times than I can mention. He coped when I had a seizure in the front seat of the car while he was driving, he pulled me naked out of the bathroom when I pitched a fit in the shower (he later admitted that watching me fit naked was one of the funniest things he’d ever witnessed – we laughed a lot about that), he picked me up from work when I had episodes and he signed waivers so I didn’t have to go to hospital. He did it, because he accepted that it was part of me, and that, me and my epilepsy are a package deal. He did it because he loved me. A few years later, I was in London one weekend visiting with another significant-other. I had a seizure in his bedsit. He didn’t panic, he didn’t cart me off to hospital. He stayed with me while I slept it off and then the next day, took me back to Edinburgh in the train so I didn’t have to do it alone. He did it, because he accepted that it was part of me, and that, me and my epilepsy are a package deal. He did it because he loved me.

Nobody has ever really been able to confirm what actually triggers seizures in me. As part of my recovery, I have to know what happened in the run up to the seizures. It’s my way of trying to understand what has happened and maybe try to pinpoint the trigger. I plague people who were there with questions. I try to piece it all back together. Some people are quite happy to give me the blow-by-blow account that I’m asking for, but others are less comfortable. I understand that. They don’t want to upset me and maybe they don’t want to have to recall it. But I have to know.

Epilepsy makes me stronger every day. I sometimes forget that. Every time I have an episode, I get back up, I dust myself down and I live life again. No, it isn’t easy. Yes, sometimes I get bogged down and it feels like trying to move forward is like wading through mud.

I’m living my life the best way I know how. Isn’t everybody?

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Epilepsy and False nails….

Well, in my experience the two just don’t go together.  Especially if you’re of the male persuasion.

My nails aren’t naturally gorgeous.  They split, break and generally look like I’ve spent a lifetime chewing them.  Hmm, stands to reason being as I have…Anyway, I’d spent a fortune getting my nails done for a special occasion.  I can’t recall what that occasion was now, but I do remember they looked beautiful. A couple of days later, I’d been shopping in town and I was standing at the bus stop waiting for the No1 to go home.  I had a fit right there in the bus stand apparently.  The paramedics were called and, true to form, I found myself in the hospital. Minus my beautiful nails.  Now, according to the nurses, I’d left most of my nails in one of the paramedics, who had tried to sweet talk me into the ambulance.  I’m guessing he won’t be doing that again in a hurry….I’ve met a lot of paramedics in my time.  An awful lot.  They’re the ones who generally have to bear the brunt of my lack of desire to enter an ambulance, be strapped in and they don’t see me at my best.  I’ve questioned the parentage of almost every single one of them and yet I remember none of them.

In my experience, paramedics, nurses, ward assistants and hospital staff in general, are amazing. They put up with me, patch me up, feed me (I don’t like being in hospital, but my favourite part is having rice krispies with sugar for breakfast ) and send me on my way in a far better shape than that in which I arrived.  Consultants.  They are a completely different breed, but I guess I’ll get to that.

I don’t remember too much about being diagnosed with epilepsy to be honest.  I’ve said I had my first fit at 15yrs and I was diagnosed 2 years later after I had a fit when I was supposed to be at a job interview.  I suppose I didn’t want to be a checkout girl at Morrisons supermarket.  My Dad had come home early from his work to find out how the interview had gone, to find me lying on the couch and talking rubbish.  He wasn’t happy.  I turned my face to look at him and gave him a mouthful of obscenities and that’s when he saw the bruising down my face from where I’d been banging my head off the wooden armrests of the couch.  The doctor was called and he trailed his finger along the sole of my foot and I felt like it was being ripped open and doused with acid.  He said that it was a sure-fire sign that I’d had another seizure.  Cue more hospital visits and this time a diagnosis of epilepsy and the beginning of the battle of the meds.  Something else I’ll get to!

As I’ve said, I didn’t know much about epilepsy when I was diagnosed back in the 80s.  I certainly didn’t want to talk about it and I was in a constant bad mood, partly down to the fact I was a teenager and partly because I was terrified.  What did it all mean?  Did I have a mental disorder?  Was I going to have to live in some kind of facility?  Could I work?  Could I get married?  Could I have children?  Was I safe to be around?  I had so many questions and fears.  I didn’t voice any of them.  I was too scared of the answers so I chose not to find out.  20+ years later and I can see the error of my ways.  Maybe someone should have pushed me to ask questions and talk about it, but I don’t remember anyone doing that and I probably wouldn’t have been receptive anyway.  Now, I ask questions.  I don’t give a second thought to how daft they might sound.  They’re not daft to me and if asking the question means I don’t spend the next 20 years wondering, then I’m going to ask it. To date, no-one has made me feel stupid for asking a question.  I have, on occasion, been spoken to as if I’m small child or a silly girl, but I’ve got the answers and the discomfort of asking has been short-lived  I still get a bit nervous going to see the medical profession of my own accord.  Arriving in an ambulance and lacking control is one thing, but pitching up at the neurology department after a summons still makes me uneasy.  So, I write down what I want to ask.  That way, I remember to ask it.  Epilepsy can be frightening and is definitely still misunderstood, but the epileptic’s lot is improving.  For instance, in the Dark Ages we would have been burned alive accused of being involved with witchcraft; in the Middle Ages we would have been referred to a saint to receive treatment for the “falling sickness”; today there is information, support and a wider-acknowledgement of the condition and its (many) treatments. Oh, and it’s not politically correct to describe yourself as epileptic anymore.  I still do refer to myself that way, same way as I describe myself as female and as brunette.  It doesn’t define me, it just is what it is.

As I’ve said, having a seizure for me is always followed by a bout of depression.  Some depressions go deeper than others and some I can shake pretty quickly.  The depression that I felt after the fits before Christmas is lingering.  It’s not as dark as it was, but it’s still hanging around.  I’m feeling depression and I’m fearful of depression, far more scared of that than the physical side of epilepsy.  Although, I quite happily advertise my epilepsy to anyone who will listen for a variety of reasons that I’ll get to later, it’s not until relatively recently that I’ve been more open about the depression I suffer.  Depression, for me, brings back memories of how others in my life “coped” with and were “treated” for their depression when I was much much younger than I am today.  It invokes a feeling of dread.  I was talking to a friend about dread a couple of days ago. He was telling me how his wife is dreading a long-haul flight with their two very young children.  The flight is inevitable, so he just accepts there will be some pain involved, but for his wife she is actively dreading it even though there is nothing she can do about it.  It’s an interesting concept.  I don’t dread physical pain.  Emotional pain?  Well that I dread, and rather than accept it as inevitable and not worry about it, the dread becomes a constant regardless of any action taken.  Problem is, in my experience, a depressed mind isn’t a rational mind and so the cycle continues.  Dread attracts dread and all of a sudden everything is frightening.  The only solution is to take action to break the cycle and of course that involves a great deal of dread…..viscious.

Today has been a strange day and I’ve spent most of it thinking about my jigsaw.  I’ve been thinking about how there is a sea of grey where my 30s should be.  I’ve been thinking about my life and what I’ve done with it so far and I realise that my 20s were the high point.  My 30s was a series of bad relationships, bad decisions, depression and a job which I thoroughly enjoyed but didn’t stretch me beyond my comfort zone.  My 30s were blah and if I’m not careful, my 40s will go a similar way.  So, it’s time to take control again. To accept the depression for what it is but to also accept that it will pass.  The trick is not to dwell and to not let it become all-encompassing.  I accept my epilepsy has consequences.

One of the advantages of having epilepsy is that I save a fortune not getting my nails done….