13 Nov 2019

Epilepsy - My Hidden Daily Struggles (Update)

*Disclosure - This is a paid collaboration*

Back in 2017, I wrote about all the hidden daily struggles that I have due to some of my disabilities, mainly Epilepsy. Quite a bit has changed since that post, both disability wise and within my personal life, so I thought I would do a little update post on how things have changed, and how I have been adapting to the changes. Since my last post about my daily struggles, I actually had a seizure again so wasn't able to drive for a year - luckily though I haven't had another one since and have been seizure free for a while again now...plus I can drive again! I'm also currently going through diagnosis for problems with my hips, and also waiting for an Autism assessment and diagnosis. So many things to update you all on!


Before, I told you about how I cannot bath or shower alone in case I have a seizure. Since my last post, I have actually discovered that a lot of the problems surrounding having a shower are sensory related. I hate the feel of water running over me, and it makes the experience really stressful, so then I am stressed before even stepping into a shower. Stress increasing the risk of seizures, so it is great that I now know that it is a sensory issue. I discovered this after going to the doctor due to anxiety and being referred for treatment for this. Within about 10 minutes of meeting me, the psychologist had noted that she thought that I may be Autistic. This makes a lot of sense, and I am now waiting for official diagnosis, although this can take some time. I've actually been considering getting a stool for the shower, as this will help with the standing aspect and I think I would feel more comfortable during my bathing experience. Luckily places like Fenetic Wellbeing have all sorts of aids available. I just have to realise that it isn't embarrassing to use aids that you need!

I also struggle with eating and preparing food, and have a very limited amount of foods that I am happy to eat. Apparently this is also related to being Autistic. It is great to finally have some answers about why I struggle with certain things. Since finding out about being Autistic, I haven't been as stressed and have been able to realise why I do certain things in a certain way. Although it is not needed, I feel like an official diagnosis will open up a pathway for more help and support, so I'm hoping the wait isn't too long. 


I spoke before about having to leave university due to seizures. Again since finding out about all the Autistic traits, it has become apparent that this may have also been a huge factor as to why I struggled at university. I've always struggled with school, and hid this a lot. I achieved good grades, but struggled with every other aspect of school. Including making friends, and having work on time, and just being organised in general. I would skip a lot of classes and hide myself at lunch and break times so I didn't have to interact with people. Although I did have some friends, my group of friends often changed and I never felt like I fit in. I always felt like I was pretending to be someone else.

Although I haven't gone back to education, I am fine with that. I've taught myself how to blog, and i'm going to be making videos again soon. I learn about SEO and social media, and I've also learnt new hobbies. I now realise why I couldn't cope in a typical work place, due to the sensory overload, and then this lead to seizures due to the stress that I was putting myself under. I can't tell you how amazing it feels to have answers as to why I don't fit in, and can't do things the conventional way like other people. Plus I have a pretty full time job with raising my daughter!


I still struggle with leaving the house, but I know now that I just need to put lots of planning into it. If I know the route, and know about the place I am going to, I am much better. I just have a lot of anxiety over car parks it seems, but I am glad that I know this is the cause of my anxiety, and I am able to prepare myself for this. I always have back up plans, and when someone else is driving I have to just cover my eyes so I can't get too stressed out about everything going on around me. 

Having to plan every single detail of a trip can be a bit annoying, but it is something that I have to do, and it it prevents a seizure or an Autistic meltdown then that is what I will do. Again, I will have to talk more about Autism as it really has changed my whole outlook now that I know that I am Autistic.

I have so many more things to update you all on, but I will do some more posts all about my disabilities, and especially about my journey to finding out I'm Autistic, and why an official diagnosis isn't extremely important. I've felt really accepted into the Autistic community and I'm 100% confident that I will receive a diagnosis when I finally get an appointment (the waiting list is 2-4 years at the moment).

I hope you have enjoyed this update, and let me know how you are getting on in the comments down below!



Post a Comment

If you would like to leave a comment about the subject covered in this post, please feel free! I allow links to your own blog, as long as you have left a relevant comment!