If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!


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…


Epilepsy and Waiting…

I hate having epilepsy. It’s been 6 months since a pretty bad episode and I’m still waiting for tests, waiting for answers, waiting, waiting, waiting!

I don’t understand why it takes so long. 6 months. It’s my brain for crying out loud! It’s not like I’ve broken my nail! Why is it seemingly so hard for the consultant to understand that while I’m just a patient, one of many, to him; I’m important! OK, so I don’t fit multiple times a day, but that doesn’t make my epilepsy any less important surely? It doesn’t to me!

I feel like I don’t matter. I feel unimportant and I feel ignored. I want my consultant take an interest in me and my epilepsy. Is that too much to ask? It would seem so. The technician that did my EEG asked me questions my consultant never has, he seemed to be genuinely interested in what went on with my fits. How I felt before, during and after. My consultant could do with taking a leaf out of technicians book! I know, consultants are busy people, and they have to see so many people, but I’m afraid I just can’t get past the fact that it’s my brain that’s broken, my brain. Maybe, if my particular consultant had a better way with people, then I would feel like a human being and not a number when I see him. Common courtesy wouldn’t kill him.

I feel anger and frustration. I feel it in my chest. My breathing seems shorter and I’ve got the familiar feeling of anxiety. The tears are pushing at the ducts and there’s a light prickling sensation in my nose. The tears. I want to be taken seriously. I want to walk out of his office and feel like he’s listened and he’s going to act. I want to feel reassured that he will find the best way forward for me and my epilepsy and that he will explain everything to me fully, present my options to me and help me make a considered decision that I feel comfortable with. I’m really not convinced that’s too much to ask.

I can’t end my epilepsy. This is life-long. I’m hard to control with drugs, so why bother taking them? I mean what’s the point? Are they really preventing me having more seizures than I currently do? I thought they probably did up until this last episode. It was bad, in terms of my fits. If the drugs don’t stop them and they have no impact on the seizure’s severity, in fact, to me, they seem to be getting worse, then why do I take them? I don’t know any more.

I don’t want to have tests done and wait, always waiting, for results that are often, apparently, “inconclusive” so they’ll need to be done again. More waiting for an appointment to come through the post then more waiting for the actual appointment, more tests, more waiting for answers, then more waiting for an appointment with a consultant who just doesn’t seem to care. It’s my BRAIN!

Anger is burning in me today. Am I feeling sorry for myself? No, I don’t think I am. I’ve put my trust in so many people over the years. I’ve put my hope in so many people over the years. I’ve gone to the appointments, I’ve asked the questions that I wanted to ask, but some questions I didn’t ask, because I didn’t know to ask them. My neurologist should be making sure that I’m made aware of all the circumstances, all the possibilities and all the facts regarding my condition. Yes, I do try to do some research, but I’m not medically trained so I rely on those who are, to help me navigate through the wiring and make sure that I fully understand which wire is plugged in where. Isn’t it? Am I wrong? Should it be my full responsibility?

I don’t want to feel angry. It’s not a good feeling. I’m struggling to channel the anger now. I try to ride it, usually. I try to placate it. I want to use the feeling in a positive way. Right now, I don’t know how. It’s overwhelming. I can’t help but think back to just a few days ago when I felt so unafraid. It’s times like this when I feel like epilepsy has beaten me. I feel worn down by it and deflated. The daily battle raging in my head feels like it’s being won by the dark side. Sometimes the depth of anger I feel towards my brain scares me a little. It’s just so ironic that it’s my brain that allows me to feel like that. My brain needs to work on its “soft skills”! I find that the hardest part to get my head around. The struggle in my brain is played out emotionally as well as physically. I sometimes feel like my brain is having a lot of fun at my (my brain’s!!) expense.

Back to waiting. Waiting for a letter. Waiting to see what someone who doesn’t care about me thinks is the answer. Waiting because it seems I have no option. I know my own nature though. I know that there are 3 options, I know which option is my preferred one. I know that my patience is hanging by a frayed thread. I know that 6 months is too long for me to wait.