Living with Epilepsy
This post is just going to be a general overview of what it is like to live with uncontrolled epilepsy, and to try and give you some insight into what it is like for those around me. I know people have it worse than me, then some have it better than me, this is just a snapshot of our life. The two weeks that have followed the TC have been two of the hardest of my life, because of the epilepsy, pregnancy sickness and because of things that have happened to my family. In this blog I have always tried to find the balance between being honest and respecting people’s privacy, and in the interest of their privacy I won’t go into detail, but it has been an incredibly hard time for everybody. There have been a few positives such as the meeting I was asked to attend as Patient Representative (blog post to follow shortly) and also being asked to cover the Young Epilepsy Awards as a writer, and I am clinging to these in my weaker moments.
Shake It Off
I don’t think people realise the impact epilepsy has on families, it isn’t just me who suffers but those I love the most. This seizure has dented my confidence more than my pride will allow me to admit, and I think I have only left the house once since without somebody with me. I currently have an irrational (or maybe not) fear of tube station stairs! Because of the things that have happened within the last two weeks it has been twice as hard to shake off the after effects of the seizure, I just can’t seem to.
I have also started on the Keppra alongside the Lamotrigine and that has been tough. I’m beginning to feel the same way about Keppra that Chris feels about Clobazam. I am exhausted on it and cannot make it through the day without having to take a nap, this is as well as the fact I am still being sick daily which is taking it out of me. I have been really stressed out and that is making it very difficult to judge what affect if any the Keppra is having. Stress and tiredness have always trigged my epilepsy even when it was well controlled.
Although almost everyone I have spoken to has said that Keppra also made them very tired, so I’m hoping at least some of it wears off. It’s a vicious circle at the minute, I am tired because of the meds/epilepsy and pregnancy but can’t sleep because I’m stressed. Something has to give.
Burden and baby sat
I am well and truly running on empty, and this has been a large part of the reason I have had someone with me all the time. This is exhausting for my family. I was only able to go and watch Chris run Silverstone Half Marathon because my in-laws came. Even then after a bit I had to go and sit down in the café. It then also meant I spent a day laid up on the sofa because it totally took it out of me.
Chris has barely left my side, luckily his work have been brilliant and then he has been on his rest days. On the rare occasion that he hasn’t been by my side there has been someone else with me, or my sister making regular phone calls. My 17 year old dog walker/friend has become more like my babysitter than the dogs. I’ve had friends on rotation to try and give Chris a break.
As I mentioned before I have had to make choices in what I do and that has been hard. Cancelling time with friends because it is too much on top of appointments, attending a dinner for my Dads birthday which then meant missing one of Chris events. You will never know how guilty I feel about that. He gives me so much support and yet I couldn’t pull myself out of bed to be there for my husband, and it breaks my heart no matter how much I know he understands.
I have been at my sisters to spend time with my nephew and niece, and rather than being with them I have had to go and lay down because I feel so tired and ‘funny’. I don’t even trust myself to hold my 12 week old niece in case I drop her. I am not sleeping very well and as I mentioned it makes the epilepsy worse and then it makes everything else seem so much worse.
My house looks like tramps have moved in as I just haven’t had the energy to care never mind attempt the house work, which for anyone who knows me knows what a neat freak I am and how out of character this is for me. Again I have to thank Ellie (dog walker) for her help here, for doing the odd bits about the house when she is here.
Ricky Gervais has recently taken part in a campaign for Epilepsy Action Australia, covering that something as simple as having a bath can be affected by epilepsy. It wasn’t until I saw this campaign that it dawned on me that this is so true. I never lock a bathroom door, I never bath when no one else is in the house and generally when I shower I leave the bathroom door open. I do all of this after an incident when I was a child. They are actions that are a normal part of my everyday life with epilepsy, but are not normal to people in general.
Chris is on his week of nights from Saturday and then off to Vegas on his best friends stag do. I know he is worried about leaving me, and I find that so hard, I just want him to be able to go away and not worry. I hate being a burden. I want to be the same support he is to me, I could not have survived these last two weeks without him, and my husband really is one of the most incredible people I know. If people think I am strong and tough it is only because I have him by my side.
The epilepsy doesn’t seem any better, as Chris is away for my next neurology appointment he has started pointing out to me when I have absences so I know how often they are, whereas normally he just keeps check and tells the Neuro when we see him. I’m finding it a bit daunting being made aware, whereas normally I live in ignorant bliss to some degree as he just lets me be so not to upset me.
I am aware that I am doing too much still, even though I am barely doing anything. The Young Epilepsy Awards are on Thursday this week, which I am desperate to be at. I also have a medical appointment on Wednesday. In order to do both of these things I know I am going to have to be really strict with myself and rest up. It is all about choices at the moment, and again please be patient whilst I try and get back on my feet. I know some people are finding the changes in me difficult. If I cancel plans, it isnt personal. If I dont reply to a message/text for days its probably because something else is going on at the time, Im not up to it or in the scheme of things that is the least pressing thing to be done. I'm not doing it to be rude.
At the minute I find getting from one end of the day to the other is hard work, and I consider it an achievement if I get up and manage to get dressed – I wish I was joking!
Good News – Epilepsy Research Award
Whilst I am on the subject of how proud I am of my husband I was contacted by Epilepsy Research last week. They wanted to recognise that epilepsy also plays a part in Chris life, and acknowledge him for all he was doing to raise awareness. They asked if they could award him with their Inspirational Blog Post Award for his contributions to my blog. The award arrived Saturday and it is fair to say I am bursting with pride, and grateful to Epilepsy Research for thinking of him. #1in103
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.