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Epilepsy Blog Relay: When taking it slow helps seizure control

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Hayley’s Story

I wanted to share some thoughts about the virtue of patience and how you have to learn to develop it by the bucket-load to be able to cope when living with uncontrolled epilepsy.

Living with uncontrolled epilepsy

I have a little wooden box which my sister bought me. It’s full of little metal talismen (is that the plural of talisman?). It comes with a key-ring pouch and you pick the one which you need most every day to carry around with you to remind you to think about that virtue (strength, hope, courage, patience etc) as a coping strategy.

Changing Medications

One major element of epilepsy which requires patience is when changing medications and waiting for appointments. Nobody warns you it’s going to be loooooooooong! Even as the neurologists or nurses blithely write out your drug charts with dosage instructions when transitioning from one drug to another it never fully registers that they’ve organised the change over a period of 16 weeks! That’s a third of a year. A third of a year for potentially feeling awful (and often progressively worse as the dose increases) while you grit your teeth and try to remember that the therapeutic dose you are working towards might be the magic bullet. It’s really tough. It’s by no means unique to epilepsy but these things can’t be done any faster, so all you can do is learn to be patient.

Waiting between doctor appointments

The gaps between appointments drag horrendously as well. It doesn’t matter how much you rationalize that there isn’t any point in anyone seeing you if a medication change isn’t complete. It still feels like you are being ignored and you find yourself wanting to be pointlessly poked and prodded to see if there is something that has been missed.

My neurons, in a literal sense, go haywire if I do anything too quickly. My personality is naturally pretty intense; I’m not content unless I’m insanely productive. So, being reduced to a state where knowing the safest and most sensible way to get anything done is by moving at a snail’s pace has taken a lot of patience while I adapt.

Slow is the new fast

I am getting there, time has passed and slow has become the new fast. Getting up in the morning takes about two and a half hours; this works for me. Most of the time I can minimize my seizures this way and if they do come, I wait them out by patiently willing my brain to calm itself down. The other alternative (because patience isn’t always a practical option if I have to hurry somewhere) is to take a tranquillizer. This speeds up the calming down process for me but I’m sure you can agree it’s not really ideal.

Slow cooking wins

Cooking dinner is a slow process. Gone are the days of the Jamie Oliver meals in minutes for the stressed nine-to-fiver in our house, everything is put in the slow cooker or oven roasted. It’s safer and it minimizes the risk of burnt dinner and burnt me if I need to take time out for whatever reason. Again, with a bit of patience we still get to eat balanced meals every day.

Eco-friendly transportation

I can’t drive so I have to walk (or use public transport) which usually takes longer. It’s not the nicest in inclement weather but it’s good for me and the environment so it has it’s benefits. Being calm is one of the key elements of managing my epilepsy so I just have to remind myself what happens if I do try to (metaphorically and literally) speed up.

I wish I could honestly say the world would be better if we all slowed down but I’m not quite there in terms of believing that yet. It’s okay though, sometimes going at a slower pace can be rewarding. I didn’t chose my circumstances and I liked doing everything at pace but slowly, slowly isn’t as bad as I thought it would be.

Patience wins

The last element I’d like to touch on in terms of raising awareness is the patience which those around you need if you’re living with epilepsy. The patience to look on while we tantrum and rant about how badly things are going and how horrible we feel, while you can’t do anything to fix it. The patience to take on an extra load because we’ve started something and then realized epilepsy isn’t going to let us finish it and the patience to wait for us while we sit around looking lazy because our bodies and brains are exhausted or if we need to take a break half way through an everyday activity. My memory isn’t too badly affected yet but you might also need to learn to be patient while we struggle to get our words out or remember what we wanted to say. Unless you happen to be a nurse who specializes in chronic conditions we know you weren’t any more equipped to deal with this than we were. It’s just one of those things we’ve got to learn to work with together.

I hope this helps someone who is new to the journey, developing virtues doesn’t have to be as deep and meaningful as it sounds but reality of the situation is, unless you get really lucky, some things may take a really long time and the sooner you can learn to listen to your body the better you will fell, even if you can’t fix the seizures.

  1. Flower Roberts
    | Reply

    Great job here. Thoughtfully written.

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