I’ve struggled to write here for a couple of weeks, I’d love to say it’s because the weather has been so glorious that I’ve just wanted to enjoy the sunshine but that’s only 25% true. The rest of the truth is I’ve just been exhausted, not just exhausted from going to the gym too much or too many late nights. I read a long time ago that having a seizure can use an incredible amount of energy which is why I’m so tired after my seizures for days.
I also get utterly miserable for almost a week after a series of seizures, some people would call this misery depression. Maybe it is I don’t really know but I do know that I don’t want to take any more medication so I refuse to accept that I am depressed and just try to ‘get over it’. I do know that this is a terrible terrible thing to say to someone who is genuinely suffering with depression which is why I refuse to accept that I might be.
I also have an awful memory after not only seizures but after increasing my medication, I forget what I’m saying when I am saying it which is really annoying. Even more annoying though is the people who think you’re stupid or an idiot/fool because you can’t remember things, maybe they should have their brain shaken around and then be given an electric shock and then be given a strong chemical medication and see how they manage. As you can see I also get a bit pissy.
Trying to hide all of this is hard work so it’s easier to just shut myself away from the rest of the world so they don’t see how bad I feel with it. I can’t imagine how those who have more regular seizures than me or have children or in education or work manage. How do you cope with the memory, mood and tiredness? How do your children and work colleagues manage? As I’m writing this wallowing in my own self pity I do feel guilty that my position living with ‘this’ I am one of the lucky ones to have the warnings or auras that I have so I can get to a safe place and I don’t have to look after anyone but myself when I need to rest, so for anyone that’s reading this who isn’t in my position I am sorry and feel free to rant at my post
The other thing I really struggle with is the medication, the different medications I’ve had have affected me in different ways, one made me want to murder regularly, not just murder the people I don’t like but also to people in my way on a walk or going too slowly in a supermarket queue and of course ANYONE who says something I didn’t like. The medication I’m on now just makes me sooooo tired, every time it increases I could sleep a the full week.
As you can imagine I’ve looked this up a fair bit and as always the epilepsy action page is a real help and has support. I’ve put some links with this post and would hugely recommend going to them.
The BraniSET app will have this information and more, take a look, download and share. You’ll find us on all social media and would love to have you there. Just type in BrainSET to find us or go to this link https://linktr.ee/Brainset. You can subscribe to the mailing list too here https://www.brainset.co.uk/brainset
Thankyou as always for reading this, I hope it’s been some help and now I’m going to have a cup of tea and a snooze.
https://www.epilepsy.org.uk/info/health-matters/wellbeing/fatigue
https://www.epilepsy.org.uk/info/health-matters/memory
https://www.epilepsy.org.uk/info/health-matters/depression
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