tag:blogger.com,1999:blog-85507430805499663132024-03-14T19:37:31.752+13:00Epilepsy and a New-BornA Woman with Epilepsy and a NEW Baby – Epilepsy vs. Sleep DeprivationPippahttp://www.blogger.com/profile/12775939573536117348noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-8550743080549966313.post-18958095201082282532010-04-13T15:40:00.005+12:002010-04-25T13:40:22.858+12:00Am I Really Alone? A Woman with Epilepsy and a NEW Baby – Epilepsy vs. Sleep DeprivationAnyone 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. <br />
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Either I’m more unique than I thought or there is a glaringly obvious gap here. <br />
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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…’. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Pippahttp://www.blogger.com/profile/12775939573536117348noreply@blogger.com23