It has taken me a about three weeks to write this, demands of a new-born has meant an entry that I can normally write in half hour has taken me this long, it’s also taken this long because the epilepsy and medication changes have meant things have been a bit hazy and I haven’t always been up to writing. The paragraphs have been written by me as they happened so are in the present tense, when actually they are events that happened weeks ago.
First week at home
I won’t lie I feel awful. I have felt dizzy, sick and drunk, there is no reason at all for this. It is a horrible feeling especially when you have a new baby to look after. Thankfully Chris is on his second week of paternity but I have been fretting about him going back to work. He has been doing the feeds in the middle of the night where as I have been getting up early with Noah, it’s a system that works very well but I know it can’t last once Chris is back at work. I felt confident enough at this point to take the Clobazam for two nights, it was hideous feeling so drowsy with a new-born but I knew it had to be done. I was of the opinion that feeling awful in the short term was for the greater good in the long run. I was taking Clobazam to cover the increase in complex partials seizure that had been happening since coming home. I felt bad that Chris was doing all the night feeds when I felt like I should be. He was great and told me that he was Noah’s parent too and what was paternity leave for if not to give me a chance to recover? Whilst I spent two days feeling worse it did then help me feel a bit more human and a bit more like myself. The upside to this week has been that Noahs jaundice seemed to be improving, and I was pleased as I had stopped listening to the professionals and was trusting my own judgement; it was a scary feeling but I was getting used to his ways and him mine. What was worrying was that I was also still being sick and again there was no reason – this was not part of the deal, once I had baby this was all meant to stop!
I was my usual self and unable to sit still, this wasn’t helping my recovery at all and I wish that I had listened to Chris as I’ve put my recovery back. I had Alex stay most weeks as she had during my pregnancy to give me a bit of support, and I will be forever grateful to her, especially for being there the whole way through. I was also really lucky that my friends and family were appearing with food, I’m not sure I would have eaten if they hadn’t. Poor Chris had spent 9 months of having to put up with no food in the house because I couldn’t stand the smell and here we were again, now I couldn’t even face cooking again! One of the highlights of this first week, for me, was that Noah got to have all his cousins in one room. I loved it and I love the photo taken that day, these were special times.
As I said my team were on the ball with getting me an appointment in less than a week of being discharged. I was still having partial seizures due to birth and tiredness. The epilepsy nurse said that they didn’t normally encourage naps during the day as they preferred mums with epilepsy to get sleep at night so body clock wasn’t out of sync, but in my case with sleep, or lack of, being such a big trigger he suggested it may be a good idea for me. Years of shift work meant I had no problem with sleeping during the day!
I talked about feeling dizzy and drunk and the nurse told me this was proof that lamotrigine levels were rising as they were low in pregnancy and therefore the higher dose was beginning to take its toll. However it made me feel better knowing that there was a reason for feeling like this. A six week plan was put in place. The main aim was to decrease the Lamotrigine so that the levels in my blood were not too high and to stop the side effects. The Keppra would remain as it was for now and I was to stop Clobazam so I was able to judge how effective the decrease was and how my body was coping with it.
He then asked if once Chris went back to work if I had support system in place to help with baby and to allow me to get some sleep, as it was likely to be a while until I was steady on my feet again. I was so frustrated but little did I know how right he was in that I would need help. I know we chose to have Noah but I don’t think people ever fully appreciate the effect lack of sleep has on me with my epilepsy.
Adjusting to life with epilepsy and a new baby.
This has been a whole new learning curve. I have never been a Mum with epilepsy, I’ve never had to deal with the hormones, or with sleep deprivation, bringing up a child and what it would mean for my epilepsy.
As I said that first week was a blur, Chris did his best to help me gain confidence but being on Clobazam and still feeling off it wasn’t easy as I didn’t always trust my own judgement.
The stream of visitors was lovely but it was also draining and I spoke to Chris, I knew we had to slow down the amount of visitors as it was not going to help my health to keep playing host. It was hard to say no to people or ask them to come different days, but thankfully people were understanding.
So Chris returned to work and this left me responsible for all night feeds as he was on early shifts. One day I felt so dizzy I thought I was going to pass out with Noah in my arms – thankfully I didn’t. Chris came home and I told him what had happened and how much it scared me. I was still finding it hard and difficult to ask for help. It’s hard for me to write that now as I felt like a bad Mum, that people would think I shouldn’t be left alone with my own son. The more time I’m spending at home (which I’m having to for recovery purposes) the less and less confidence I have in regards to taking Noah out alone, my friend Lucy has been brilliant coming over once a week to get me out and about for a bit so I’m not totally alone when going out, not over doing it and trying to give me some confidence.
It seemed like the health visitors and midwives were taking a huge interest in me because of the epilepsy, I’m sure the health visitor had my number on speed dial phoning to check up on if I was ok and coping. Whilst its lovely and reassuring to know that they are doing their job I couldn’t help but think maybe if they paid this much attention to babies who were really at risk…
She told me about all these groups and classes I could go to with Noah and how everything was there to help etc but for all of that said I didn’t feel like I could be honest with them for fear they would think I couldn’t look after Noah, I felt like any comment I made about the epilepsy and finding things tough would mean they would interfere more than they would help. This lady didn’t have an understanding of the condition I live with or the effect it has on our life. I felt like I would be judged by them. I didn’t admit that there were times when I was both alone or with Chris that I had been unsteady on my feet, so I just nodded along and said we were fine.
As I was having a serious lack of sleep (just like any new Mum) and with a drug reduction, side effects, initial increase in seizure activity and the heat I was finding things tough, but being my usual self I was also finding it even harder to admit to that and ask for help. I know I things like lack of sleep and the like are what any new mum faces and I have no more right than the next to complain but I did also have to stop being so hard on myself when I had so much else to contend with.
One day someone was taking an interest in epilepsy/pregnancy and parenthood, I’m happy to answer any question so was pleased they were asking rather than assuming. Then they innocently asked ‘are scared you’ll have a seizure and drop him?’ They were only asking a question that must have crossed a few people’s minds but I guess people were always scared to broach.
I went cold, that one question hit a nerve. If I thought falling when I was pregnant with him was scary. I had never considered until he was here what it would be like to fall with him in my arms so tiny and vulnerable. It’s a fear that haunts me every day and makes me feel sick to my stomach.
The most challenging moments of living with epilepsy are when I run into moments when I am doing so well and then I hit a bump in the road. It’s in these moments that I have to be my own coach, I have to be my own lifeguard. You can have all the family and friends in the world that are the greatest ever but the bottom line is , you have to stand yourself up when you’ve found yourself fallen down because no one else can do that for you.
Thank You Young Epilepsy
Minding my own business the door bell rung the other morning. Imagine my surprise when I opened my post to find a card and bib for Noah from the communications team at Young Epilepsy. They have been so supportive throughout my pregnancy and this was a very thoughtful and lovely gesture. So thank you from myself Chris and of course Noah thank you for the gift and your kindess.
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.