Epilepsy and a Blot on the Landscape…

Over the past few days, I’ve been reminded again (as if I needed to be) as to just how much daily medication changes me. Due to a mix up that’s just too farcical to go into, I didn’t have my proper dosage of either meds that I take for a just a couple of days. Just to be clear, I take daily anti-epileptic drugs and daily anti-depressants. Anti-everything in order to live a pro-life! Maybe I’ll get to how that makes me feel later. I know medication changes me. Those of you who have been on this blogging journey with me for a while, will know that I struggle with being constantly medicated. 

After just 2 days of less drugs than I normally take; this is how I feel. Remember this was a forced withdrawal, if you like, this is not a gradual, doctor-sponsored reduction in medication. Cold turkey.

  • Disorientated
  • Unable to make a decision
  • Upset & weepy
  • Headachy
  • Weak
  • Scared

I’m functioning on the periphery of my capabilities. I know what to do and I know how to do it, but I’m terrified that I’m doing something wrong. The world around me has slowed down and I feel hyper-sensitive to everything. The fear of fitting is so much worse than a seizure itself, in my opinion.

When I woke yesterday morning, I felt OK. Lying in bed, posting on FB and basically ok. Then I got up. Then the world shifted ever so slightly out of focus. I knew that I was going to the chemist to sort some meds, but I also knew that this was not going to be a quick “take a few pills you’ll be fine” situation. That’s the rub. So, went through the morning routine, went to the chemist, became irked at the assistant’s inane chatter and hyper-enthusiasm, but squashed the frustration down deep so he didn’t see it. I got on the bus to head to work. The weirdness spreading through my veins reached a new height. I didn’t want to be on the bus, I was scared I wouldn’t know when to get off it. I got to the office and explained to my boss that I didn’t feel right and I explained why (my work are good about my epilepsy, can’t fault them for the support they give). My boss asked me if I wanted to just go home. I didn’t know. I couldn’t decide whether to stay or go. I didn’t know what was going to be better and the frustration at that was bubbling up. I told him I didn’t know and couldn’t decide. He asked me if it was ok if he made that decision for me and he sent me home. I’m grateful for him for doing that. I took my laptop and I went home. The bus journey home held the same fears as the bus journey to work had. I don’t know why I didn’t get a taxi. I knew I probably wasn’t going to fit, I was too aware for that, but I also knew I wasn’t making the best decisions of my life. 

I spent the rest of the day doing little bits and pieces of work that weren’t particularly taxing. I went to bed early and, of course, I didn’t sleep well at all.

So, how do I feel today? Well, I’ve had my meds, but I still have a weirdness (wish I had a better description of that feeling) that’s hanging around. The world has speeded up a fraction and I’m probably a bit more on the ball than I was yesterday. Fear is there and there is also a bizarre sort of throbbing heaviness in some of my muscles.

Think I’m in for another rough day.


Epilepsy and Advice…

Over the years, I’ve been on the receiving end of more advice than you could shake a stick at! I love that expression “could shake a stick at”. Although the origins of the saying are many, it’s thought that it’s a reference to having more sheep than you could control with a single shepherd’s staff or maybe it’s a reference to George Washington being seen brandishing a ceremonial wooden sword over the defeated British troops. Whatever its origins, the phrase aptly describes the abundance of advice I’ve been given. Advice has ranged from “stop being so pathetic” to “just ignore it” and has included many other pieces of unsolicited wisdom such as “listen to your heart”, “listen to your head” and, my personal favourite, “just be patient”. The giving and receiving of advice is very dangerous territory, to my mind. Get it right and you’re a hero; get it wrong and you’re the devil incarnate. If you give advice, you have to be prepared that it may not be accepted or adhered to. It means you have to be able to have no feelings as to whether the advice is taken or not. And the decision of the receiver to act on or ignore the advice is indeed their right. 

If I ask you for your advice, it means I want to hear your opinion as to what you think I should do in a particular situation. It doesn’t mean that I’m necessarily going to act on it. Similarly, if you don’t really want my opinion then please don’t ask me for it. Don’t ask me what I think, then get mad because I express an opinion that may not be a popular one, or may be controversial. 

When is advice just an opinion and what exactly is the difference? According to the Oxford English Dictionary, advice is “recommendations offered with regard to prudent action” and opinion is “a view or judgement formed about something, not necessarily based on fact or knowledge”.

If I’m understanding that correctly, then advice is what I think someone should or could do in their situation; whereas opinion is what I think of, or what I would do in, that same situation. The two aren’t necessarily the same. 

Living with epilepsy is a tough gig. Sufferers like me have no outward signs, other than showing up with bruises, chipped teeth and blackened eyes every now and then. We know that when Joe Bloggs in the street sees those injuries he doesn’t immediately think “epilepsy”. I’ve been called a “junkie bitch” in the street before. Someone saw needle marks on my arms and made an assumption. His opinion of me was formed right there in a split second. I could have reacted angrily, tried to put him right, but instead my head dropped, my confidence ripped and my world shrank. He had no idea how long I’d spent in hospital and how I’d been restrained and how hard I fought the medics trying to give me an injection. Opinions can be brutal. They can be formed with no basis, no understanding, no thought process and no questioning; yet we are all entitled to them.

Living with some people’s attitude toward epilepsy is also hard. I do believe things are changing and stigma is lessening but it is definitely still out there. What I find hard, is the ignorant opinion that I should not (could not even) live a full life because I suffer from epilepsy. I find unasked for advice to stay home and stay quiet also difficult to deal with. Yet, over the years, I’ve had to accept there is a hardcore of ignorance out there. Fear of the inexplicable and no desire to understand. An immediately formed idea of what the eye can see, but not the truth behind it. 

If I stand before you in my bruised and battered glory after enduring the punishment my brain has inflicted on my body; what do you see? Do you see beyond the bruising? Are you willing to look? Or are you going to assume you know my story and advise me to leave the man who did this to me? Are you going to whisper behind my back? Are you going to discuss with your friends my “situation”? Are you going to bother to find out what that even is? Maybe it is a sad reflection of the world that we live in, that some people immediately think I’m a battered woman or someone with a drug habit when they see my superficial wounds. 

I’m lucky. Most, not all, but most of the people I come into contact with, can look at me and see beyond the deep purple shading, the scars on my face and the puncture wounds on my arms. Most offer no advice or opinion, just the words “I’m here if you need me”. 

I find it next to impossible to ask for help. It’s a weakness on my part. Sometimes, I find myself on the edge of an abyss and know it would be easier to allow the darkness to consume me, than to admit there is a problem. In those situations, I’m scared to speak of them for fear of consequences. I don’t want to be the cause of someone else’s worry, I don’t want to be a burden. I don’t want to hear the strain in their voice or see the pain in their eyes. So, I tough it out. As I’ve got older, I’ve found it harder to come back from the darkness intact. My fuse is shorter and my internal turmoil verges on intolerable. All compounded by the knowledge that the strain can bring on a seizure at any time. But, I don’t want you to know that the fear of that kills me a little every day. I plaster on the smile, but my words can be harsh. You hear the tone but don’t understand it. The tears borne of frustration come next. I can’t express adequately to you how I’m feeling. I can’t make you understand the pain I’m feeling. I don’t know how to ask you for help. 

My head and my heart are often in conflict. My patience sometimes knows no bounds and other times is non-existent. So, if you are offering me advice that includes those aforementioned pearls of wisdom, please ensure you also include the “how” part because, whilst I’m familiar with the theories you’re expounding, I’m darned if I know what to do with them!