I don’t even really know where to start with this blog post because I have so much I want to include but at the same time I haven’t had enough about me to put pen to paper. I did intend to cover my latest neurology appointment but as I have written this the before bit has ended way longer than I intended. I’ve realised that I haven’t given a general overview of our life recently and life has been a rollercoaster of late so I will do my best to cover it all.
Pushing me to breaking point
If you follow me on social media you will know that since starting Keppra I have been having some issues tolerating it. Again I have thought hard about sharing this because 1) it doesn’t show me in a very good light and 2) its personal to share, Chris has had a read and he is ok with it so here goes, especially as we always said we would be honest.
So Keppra; what has it been doing to me? Largely controlling the seizures which has been fantastic BUT I will cover the side effects one at a time trying to cover what has been happening. The question is, do I stay on Keppra and live like this? Or do I come off it feel human again and risk more seizures? It’s the lesser of the two evils.
Tiredness: I am not talking about just feeling a bit tired I mean cannot keep my eyes open, twice I have been alone with Noah and found myself nodding off on the sofa. I have nodded off on the tube, on a break from work, when with friends, you name it its happened. I get so tired that I can’t get myself from the sofa to bed. I have to say thank you to the Levines here for coming over and being my company and without even realising what they were doing they put a bit of life back in me. Some days getting from one end of the day to the other feels like a huge achievement.
Joint Pain: This is crippling, I struggle to hold Noah, pulling him out of a high chair or picking up from the floor or out of his cot is killing me, never mind walking up and down stairs with or without him. I have been comforting him in the night silently crying because it hurts but knowing there is no way on this earth I would put him down or let this affect him. I have woken in the night crying because my joints were in so much pain. I feel 90 not 30! I stopped running for a bit, but then decided to try and ‘run it off’, it worked for a bit but the aches always reappeared.
Keppra Rage: This one gives people a good laugh but is also really serious. I have hated everyone and everything. By nature, I am not a patient person but I do not have a temper not in the slightest, I go out of my way to avoid confrontation. I am known for throwing the odd tantrum in frustration/through impatience but never had a temper at all, so this has been a shock to my system and I don’t know how to handle it or a healthy way to let it out, especially when I had stopped running because of joint pain. I have lost count of the amount of people I have got angry at on public transport lately, the irrational urge to ram the buggy into the back of someone’s ankles, the complete melt down because there isn’t x, y or z in the fridge, if dinner doesn’t come out right, someone breathing/eating loudly, saying something that even slightly annoys me, the list goes on and ON.
Detachment: This for me has been the hardest, I have honestly felt like it has been driving me towards a breakdown. I have lost interest in everything, I haven’t written because I just can’t be bothered, I sit at night not watching TV or reading just staring at walls because I have no interest. I feel like I am spending my days watching someone else live my life. It is a horrible horrible feeling.
My nemeses Keppra
How Chris hasn’t divorced me is beyond me because to be honest I have wanted to divorce myself at times! Chris however deals with it with the usual calmness and patience, biting his tongue very hard at times. The worst part of it is the minute I’ve snapped I know I am in the wrong or I shouldn’t have said what I had, but in the moment I can’t stop it. I think Chris biting his tongue and me admitting when I am in the wrong is what has helped us walk this fine line. I don’t mind saying, and I am sure Chris wont, that me taking Keppra this time round has pushed us to our limits, epilepsy/medication affects every aspect of life, and our marriage is just one of them. For a lot of the last few weeks he has been living with someone who really isn’t there (to be fair I am not anywhere!) I know I am not alone in this in the messages and emails I receive from people telling me their relationship is under a huge amount of strain.
Generally, I just have no interest in anything, I want to be a good wife, sister, aunt, daughter and friend but my ability to do so is seriously limited, all the patience and energy I have go on Noah so that he is unaffected by all of this, and I try my hardest with him every single day to make sure that he isn’t. I came to Chris one day and said I think I have some sort of delayed post-natal depression, he listened and went away and came back with lots of research saying I don’t think you are it’s the medication look at all this. I knew it got to a bad place when I messaged my Mother in Law admitting I needed help, or when I cried my eyes out to my Mum last night telling her I couldn’t cope, she just stared at me jaw hanging open, I think I do such a good job of holding it together publically and smiling that people are shocked when I say the truth. I have to thank my friend Amy who has been there from the moment I started feeling like I was losing the plot, reassuring me, telling me not to make any rash decisions etc., she has been a lifeline so thank you!
The anxiety has been awful and my sister would have had every right to slap me. She looks after Noah whilst I work if Chris isn’t off but in the last few weeks I have called her because I was convinced Noah would fall of the balcony at hers, or was going to drown in the paddling pool whilst I was at work. She would have had every right to tell me that if I didn’t trust her to look after him then not to leave him with her. Yet I do trust her, I trust her with my life and therefore with Noah’s. I know that she loves him unconditionally and would protect him with her life and never let him come to harm, and she is a nursery nurse by trade so used to looking after more than one child at a time, never mind three that she loves! I am lucky that she understands and just reassures me that its ok, her and Chris really do get to see the worst in me.
I had also been doing really well with tube station stairs, although I wouldn’t go anywhere that meant bumping Noah downstairs I had been going to a station on my way out where I could get him up the stairs by myself if I had to. However, one-night last week I had a nightmare that I dropped him down the stairs, Chris said I screamed out in my sleep too. So two days later when I am on my way out to meet my sister I end up breaking down at the tube station. A lady there thankfully helped me up the stairs with Noah and sat with me entertaining him whilst I calmed down, she was very kind when I explained that I wasn’t a crazy lady that there were reasons. I have not been this bad with anxiety in a long time, but it did me good to see that there are kind people in the world. This however didn’t stop me leaving two hours early for my neurology appointment on Monday having a meltdown about avoiding stairs on the district line! In the end I worked out a route that avoided the district line all together.
People also mean well telling me that it is just the medication and I know that and I am strong so will get through it but that doesn’t change how I am feeling now, and even in my rational moments knowing it is because of something doesn’t make me feel any better, take this morning for example I got up in a good mood and within 3 hours I was in a foul one. I also have been told to look at my life and how lucky I am. I know I am, I don’t ever need anyone telling me how lucky I am to call that gorgeous boy mine and as I have said a million times I count my lucky stars every single day, if it wasn’t for him I’d probably have just curled up in a corner somewhere by now. I know I only have about ten weeks left on Keppra now (blog to follow on neurology appointment) but it scares me that it will break me before we get to that point. I recently read a statistic that people with epilepsy are 22% more likely to commit suicide than those without, it’s a combination of medication side effects and not being able to live with the condition. Whilst I am nowhere near this point I also for the first time could see why people would. The decision to stop the drug that has been controlling my seizures was taken out of my hands.
As much as life has been harder than it has for a while we have also had a really good time and some really positive things have happened. Firstly, I have gone back to work :-) I never intended to I really didn’t but something landed at my feet which was perfect. I only do two days a week and even then they aren’t always full days. I have a boss who I have been totally honest with and is very understanding, it’s a really refreshing change. It has done amazing things for my confidence because a year ago I didn’t believe I would be in this position so it’s a huge thing for us, I am really enjoying being back in the work place and combining my hobby with a job! I wouldn’t have been able to do it without Steph helping with Noah so I am hugely grateful to her, Noah loves being with his big cousins and Auntie Dave so I have no concerns there.
Secondly last Sunday I completed the Great Newham 10K finishing on the track in the Olympic Stadium! I didn’t break any speed records but with keppra joint pain I was happy to just get round. I had a glitch just before 400 metres from the finish when I had an absence and ended up on my backside, luckily in front of St Johns Ambulance, who were very understanding when I told them I could see the finish line and wasn’t pulling out! I then went on to complete the Great Newham family run with my nephew Freddie, there was NO way I was missing it, we had been trying for three years to complete it (A broken foot and then having just had Noah had stopped us). I loved to pieces finally being able to do that with him and he already has asked if we can do it next year.
My biggest positive as always is Noah, no matter how tough it gets his little face is reason every single day to do battle with the epilepsy/medication and side effects. He is growing up so fast and that baby I first introduced you all to is now a perfect little boy who is finding his feet in the world.
My next blog will cover my neurology appointment where I addressed all of this with my neurologist.
My names Faye, mostly known for being a tea addict, swimmer and a swim instructor. I'm almost 34, 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.