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.

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