Tuesday, April 13, 2010

Am I Really Alone? A Woman with Epilepsy and a NEW Baby – Epilepsy vs. Sleep Deprivation

Anyone who has had a child knows that until you have had your first you really don’t know what you’re in for in those first few months. Caring for babies is not new for me - and due to being a designer – neither are late nights or ‘all-nighters’ for that matter. But, there is a huge difference between experience with these stints and being continuously on call around the clock so that you don’t know if or when you might get a breather and how long it will (or won’t) last.

Either I’m more unique than I thought or there is a glaringly obvious gap here.

The number one rule for looking after yourself with Epilepsy is to get enough sleep - that and minimising stress and fatigue. Limited alcohol is a no-brainer for anyone needing to function 24/7 as well as those with epilepsy. So why is it that while pregnant and then with a young baby (and the proverbial **** hitting the fan) I could find no information, advise, help or formal acknowledgement that there might be a serious clash of medical interests here. Not from my GP, neurologist, Epilepsy NZ field officer, obstetrician, Work & Income Support, Plunket, not books or even the internet!! Just a response of surprise or bewilderment, followed by the sympathetic ‘…I’m sorry I’d like to help you but…’.

I was absolutely drowning and wanted more than anything to be rescued. I became desperately overwhelmed and started to panic. I was beyond exhausted with no sign of hope that I could see. I know that something like this happens to many healthy women – hormones going through the roof and doubting oneself – but what if on top of that you have a condition that requires you to have solid blocks of sleep (i.e. more than 6 hours) without which your brain will literally start shutting down? I found myself in a thick fog of confusion with my brain stopping & starting in such a way that I found the simplest of tasks difficult to complete and I had no sense of time. I felt the need to get a sense of order out of my chaos by doing housework - which I became obsessed with - and found completing it the only way I could relax. Of course, the more I tried to get the house ‘in order’ rather than sleeping – the more tired I became, the worse my Epilepsy became – and so the cycle went on.

Everyone knows you don’t get much sleep with a new baby, but the reality is incomprehensible until you have one. The unpredictability of what will happen and not knowing when your next break might be is the killer. I have been taking 5mg of folic acid a day since I was diagnosed with Epilepsy at age twenty one and have always been made aware of my increased chances of having a baby with some sort of abnormality so that that was always the focus. Then when I brought my baby home and realised that I wasn’t coping, the only information I could find on being a mother with epilepsy was safety tips for the child in case I should have a seizure. These I had read up on and considered commonsense anyway, but there were no survival tips for me.

I was upset because I was not enjoying my new baby and mostly felt resentment rather than love towards him. No one who I had considered ‘in the know’ had warned me to prepare for this conflict of interests between a new baby and my condition. It does after all, only last until the baby can have faster feeds and sleep through, but at the time that seems an eternity away. I have no local/retired family and we could not afford for my husband (a contractor) to take time off work especially having just gone down to one income! I remember the frustration of knowing that just having someone else in the house for a few hours in the morning while I prepared for the day, would have helped immensely.

Guilt was also a huge issue. Looking at other women in my antenatal group and recollecting stories of my mother and grandmother – I found myself comparing my ability to cope with theirs - while being aware of the state that I was in. I had never let my condition get the better of me before, but this battle I was definitely losing.

In the end I got through by my husband ringing his parents for help at crisis point. Baby and I were taken in by my in-laws in the country for a few weeks. This was where I regained sanity and enjoyed doing nothing but resting and the odd load of washing while baby slept. After being in this haven I was scared to go home and go it alone - but with close friends and family coming to help the odd morning and dropping off meals for the freezer - we survived - if somewhat fazed and bedraggled.

Looking back, I don’t think I should have left the hospital after having the baby when I did. I knew at the time that I was extremely physically exhausted and becoming ‘foggy’ in the head with my Epilepsy being exacerbated. Following on from this my feeding wasn’t going well and I had terrible blood blisters on my nipples. I was in a panic and cried my eyes out at the hospital on the day I was to go home. I felt pressure to leave by the current ‘norm’ of going home as quickly as you can. But I should have been able to stay until I was ready to go home and ensured that ‘the system’ find me some help.

What do you do when you fall through the cracks? When you are considered neither sick nor disabled and you need help – not for the full eighteen years of a child life – but a few short months - a limited time? What do you do when you are a good citizen and a reliable tax payer who has no entitlement to help? According to Work & Income Support I am neither sick nor disabled and would be expected to sell my house before receiving any assistance.

Two years later I am thoroughly enjoying my wee boy who brings sunshine into our lives. We would dearly love to have a sibling for our son, but we would have to save up enough money to pay for help in the first few months to achieve this.