Hope to Cope On A Day You Barely Stand

Ever wondered what life feels like for someone with Epilepsy the day after a big tonic clonic fit and some bad injuries? It's not not always easy to get the words out so forgive me if I wobble....physically and mentally! 

Surviving an Epilepsy Alert Dog...yes, no, maybe? You though every day was chaos with the dog, now wait until you have fits and a four-legged friend

Transcript

Hi, and welcome to the Tuesday Epilepsy Club. This is series 4, episode 5. This is a kind of weird one. I wasn't quite sure. how to do this or whether to do this. I had a fit a couple of days ago in the bath and I managed to really badly hurt my back and my wrist and my finger. Those of you who read Instagram will have heard exactly what happened. Oscar and Tim were downstairs having a conversation. Tim came up to me afterwards and said, I thought I heard small bump, but I figured you just dropped something. I didn't drop something. Well, I did. I dropped myself in the bath. I remember getting into the bath. I remember reaching for the moisturizer, and then there was blood on the back of the bath. And somehow I managed to get out, but I don't really remember very much else except bumping into Curt. and Kurt saying something along the lines of, Mommy, you don't look very well. Do you want to go and lie down? And then I showed him my back and the back at that point was really quite sodden with blood. I'd obviously cut myself on the side of the wall or something along those lines. But on the back of this, no pun intended, bearing in mind where the latest injury is, I had an idea of a podcast which kept coming back to me again and again, but I wasn't quite sure if it was going to be as popular with other people as it would be with me. And that is how to cope with the day when you can barely stand. As somebody with epilepsy, it's not to be overrated about the fact that there are days that you literally cannot stand. I understand that the average person has migraines, period pains and various other aches and pains that make it very, very difficult for them to stand at times, but for somebody who has epilepsy, not being able to stand happens with frightening frequency. It's not uncommon for me To not to want to open the door because I'm not quite sure if I can actually get to the door. And if I get to the door, I'm not quite sure if I can make it back from the door. Therefore, the better thing to do is just not open the door or radio up to Oscar and Kurt and say, will one of you open the door? Because now I'm sitting down. I'm not quite sure if I can get up again. as I mentioned, days which I can barely stand. Remember as well though that I've been doing this a lot longer than the majority of you and there are certainly techniques in order to get through those days. Firstly, have food prepared. Have food prepared in your fridge or your freezer for that matter that you will be able to take out should the worst occur and you have a cluster of fits or you have some fits and then end up injuring yourself quite nastily. When it comes to the kinds of food that you want, you want foods like pitta, hummus, cucumber. Shepherd's pie has turned out to be quite a big one. For those of you who are vegetarian, of course all of that can be put on with a vegetarian slant instead of meat. Everyone has days where they don't feel like cooking. But I have days where not only do I not feel like cooking, but I've actually been banned from the kitchen in order to make sure that I don't injure myself anymore. In which case, having foods like this fully prepared is hugely useful. Freeze leftovers. Do you have any idea how long it took me to get used to freezing leftovers and how easy it is to put it in the fridge Forget about it and then in three days time throw it away and think, oh, I should have frozen that. That would have been quite useful in a couple of days time. So the only thing which this house is never without is freezer bags. Smoothies. You will never go far wrong if you have a smoothie maker. Obviously, if you've had a really bad fit, the last thing you want to do is make a smoothie. But if you have someone in the house who can help you make the smoothie or you always have some oat milk in the house and some bananas and some frozen fruit, then actually the smoothie itself will be relatively painless and very, very quick. Again, make more than you actually need. Stick it in the fridge and for the next day just put chia seeds all over it and There you have it. Something for you to have with nutrition and something that will help you get better. Once you've had your smoothie, there are tricks about getting through the day. Get some air. Even if that just means opening a window and opening your blind, do not think you are going to be any better off by sitting in front of your computer and watching Netflix the whole time. On the days where I can't leave the house, or rather, nobody else trusts me to leave the house, and I don't particularly feel like going out with a great big cap on my head or a helmet. I swoop the patio. It's true. I do. I sweep the patio. I sweep the patio or rake the leaves on what can only be described. Well, it's not so much grass as a greeny sort of mud pit that we have in the back of the garden, especially at this time of year. Either way, I'm within my four walls. I feel perfectly safe. I can wear the helmet and I don't have to worry about. I understand that not everyone has the luxury of a garden, but for those of you who don't have the luxury of a garden, opening a window can be just as beneficial. Anything, anything at all, to get the blood pumping and making sure that you get some air, even if you're just walking around the block. Which brings me to socialization. Socialization is really, really important if you suffer from epilepsy. The longer you wait after you've had a fit, the harder it will be to get out that front door. Starting with a really, really small distance, just the end of the road, just the letter box, and then this builds up your confidence. After I had the big cluster of fits in June, which I really badly injured myself and my voice box, it took me two months to actually get out that front door and get anywhere. with any use or significance. Socialisation does really, really help. Even if you're just going to the end of the road and talking to complete strangers about the fact that you like their coat or their hairstyle or isn't it nice weather, it means you're having some kind of dialogue with anyone else. And if you suffer from epilepsy and you haven't seen the day of light for about three or four weeks, Something really, really simple like that can go a long way. Make no mistake that once you've started doing it, it'll all come really, really quickly. And the more you do it, the more you'll realize that actually it's not such a big deal and you don't need to fret about it quite as much as you thought you did. Finally, I would say try and achieve something every single day. And when I say try and achieve something, I don't mean try and achieve something great or brilliant. I mean try and achieve something just for you, even if that's just opening a window and taking a couple of breaths of fresh air, that's something that you have achieved just for you. Write it down. If you really, really, really are struggling, write it down so that you can go through it and in a month's time you can see just how far you've actually come. It's really difficult when you've had a really bad cluster of fits and you can barely stand to get the self-confidence to go out the front door and start rejoining the human race. But if you start writing things down and every single day you've achieved one tiny little thing like going to the window, taking a couple of breaths at the window, going to the front door, making it to the letterbox, anything, anything which is just belongs to you, Then you will start to feel better about it. And yes, you will feel dizzy in between, but if you're not going far, you're not got far to go back home again. So there's nothing much to worry about over a period of time. You're going to start using your brain power again and you'll start doing things like recording podcasts, reading books and doing everything you were doing before, but it takes time. Just remember that it takes time and you are not alone in this. every single person with epilepsy is in exactly the same position. And I should think a lot of people who haven't got epilepsy but have other problems are in exactly the same position as well. So just remember, one step at a time, and you'll get there in the end. Thanks a lot for listening. I'll see you next week. Take care. Bye.