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.

22 comments:

  1. Congratulations on this initiative Philippa. Doing so will no doubt help others in a similar situation, and I would encourage anyone reading this blog and these comments with tips, ideas & contacts to please add a comment too.
    All the best Philly - love always, A xx

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  2. Phillipa. A very moving story. Thank you for sharing this with me.
    I often hear you playing in the back-yard so enjoying your boy.
    I can hear it in your voice, however it has not been easy for you both.


    Your loving neighbour Sheryl x

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  3. What a relief to get those words out of my head and out there to be read. I have had alot of encouragement and support sent to me in response by loved ones. Every message sent to me couldn't be more precious. I feel as if I have 'come out of the closet'!
    I wonder how long it will take for someone like me to find it and relate to it?
    Happy & healthy Me :D

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  4. This is a brilliant idea Phil - why don't you keep a daily report or weekly report. I'm sure people would find it both informative and extremely interesting. Good on you. We have to get the kids together for a play date - are you ever in town? If not, we can come in for a visit?

    G :)

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  5. This is very moving Phillipa, thank you for sharing your thoughts, feelings and experiences with everyone, I know from my experience even though I dont have a condition like epilepsy, I too found it so difficult for the first 4 months or so, always trying to 'get it right' and keep up etc, I can really relate to your words. My ADD also caused a little havoc, and the breast feeding ordeal was too difficult. As a nurse I will take on board your experience and hope to one day listen and help someone just like you, I'm sorry the system let you down. Thanks again for sharing, good luck with your future and your family xx

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  6. It's wonderful to be taken seriously by a health professional like Paula! Sometimes I felt because I wasn't having tonic clonic seizures in front of people I wasn't believeable. Only those that know me well can tell when things aren't right - otherwise I just appear to be distant / aloof / weird / quirky.....sometimes I actually wished that the state of my health would manifest itself grotesquely on my appearance so that i wouldn't feel that people were just struggling to take my word for it....

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  7. Hi Philippa, I too have epilepsy and have recently had a baby.

    I am on 3 different types of medication to keep my seizures under control and all 3 medications say that they "may increase drowsiness"! I was so worried during my pregnancy about sleep (and the lack of it) as I know how much impact it has on my seizures.

    As you say, all the literature I could find was related to caring for the baby and nothing on how you, as an epileptic, could start to cope.

    I am lucky enough to have relatives nearby who came almost every morning to let me have a sleep. My trouble was that as a new mother I couldn't stop thinking of my baby (she's now 15 months) and so never really slept well in those early weeks.

    My husband did a huge amount of the "night work", getting up to feed our baby or settle her. If we had not made the decision, along with our midwife, to bottle feed our baby I'm not sure how I would have coped.

    I was in hospital in the high risk centre for 4 nights/5 days. The midwives there were terrific but I was so worried about what it would be like at home - alone.

    Now that our daughter is sleeping soundly I am so grateful for a full nights sleep.

    Thanks for sharing Philippa - and you're not alone!

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  8. Yipee! My first response from another woman with epilepsy - and she relates! Thank you Liz for taking the time to write, truly valuable. Are we in the same country? I would quite like to swap notes further.
    Best regards, Pippa :D

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  9. Hi Pippa, Everything you say mirrors me, except my struggle took about 18 months to appear..my wee boy was a dream baby, even though we live in Brisbane now, and my parents are in the Hutt so we didn't have that family network to fall back on. Once Jack became a toddler I found I started to really find it hard, I had a bit of a health relapse, and wasn't driving for a period of time, and felt stuck and really sad and isolated from friends. Your talk of feeling a little resentment is so familiar to me. I found myself feeling so useless and looking at my partner and seeing the type of parent I wanted to be..but couldn't be. My visits to the neuro are ongoing at the moment and he is playing around with meds and dosages which I really see reflected in my moods! I am ok at the moment though...by the way did you go to HVHS, are you related to Evan, and did we play netball at all?!? I would love to chat more, unfortunately not in the same country but come back to Wgtn alot...Elizabeth (Liz) Keenan

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  10. Hi Philippa
    I saw your article in Little Treasures. I'm the same - overwhelmed & disappointed with the lack of info out there for me. After my firstborn (Emily, now 3years) I had 2 grand mal seizures in the space of a few hours & my husband decided to put me in hospital where I had another 1. I have recently just had 2 more grand mal seizures on 29th Dec last year & my hubby thought he'd have to put me in hospital again, which thankfully he didn't. When I got in touch with my specialist she told me it was up to me how we handled it - I could either increase my dosage by 50mg (I'm on lamotrigine) or wait until Xmas & see if I have anymore. It sucks that she gets paid soooo much money & then asks me what I want to do about it. As I"m also having symptoms of being over-medicated, she still thinks increasing my dosage is a viable option. As i'm home with my girls every arvo (2nd daughter Maddison is 15months old), waiting til Xmas isn't really an option either. What are your thoughts on that?

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  11. Do you have a Facebook page? That would get you 'out there' to heaps of people.
    My husband was great after both girls were born - getting up to the night fees & shouldering the bulk of the housework etc. Also as I'm at risk of having a seizure if I sleep during the day (weird aye) unsettled sleep at night only increased the risk of one. I"ve been epileptic since i was 14 (I'm now 33) and have had at least one seizure a year (on average) since beginning my 'epileptic career'. I'm at a loss at the moment.

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  12. Hey,Bryce here..
    Recently read your story in Little Treasures.
    I have had complex partial Epilepsy since my early teens,now a few months off 30.I am happily married and am "stay at home Dad" with our son.He is 20 months.I have had problems with sleep in the past, depending on medication.I have been on everything available over the years.I currently manage to survive on less than the recommended 8 hours.This comes from bad habits such as getting up at 4 or 5am. I have had time's in the past that have been the complete opposite.
    Take a look at my blog. http://livingwithepilepsy.biz

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  13. Hi Jane
    I know what you're saying about feeling left to make your own decisions about the best course of action with your own care...it's hard because everyones condition and response to different meds is so unique...all I can say is there have been times when I wish I had pushed harder and taken action sooner, so much time can be lost until things get out of control and you are literally forced to do something one way or another....if i were you i would try upping my doseage now then you'll be in a position to tell whether you need to be considering a different drug.......lamotrigine didn't suit me particularly well, it took years and patience of trying every drug and cocktail available for my condition before the best one was found, also sometimes when you've been on one a while they simply stop working so well and you need to change when maximum doseage isn't enough......lastly, i've learned when there's a child involved things become that much more urgent and critical!!....hope this helps, pippa
    ps i haven't set up a facebook page for the cause but had thought to and just need to find the time to look into how to do it!

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  14. Hi Bryce
    Thanks for your response - I dream about being able to get up and organised before kiddy wakes up full of energy!...I looked at your blogg, I related to something I read about the condtion not being physically apparent (apart from during a tonic clonic) and there have been times where I looked as bruised and battered on the outside as I felt on the inside so that I wouldn't feel the constant need to explain myself or make excuses or feel embarrassed - so often I have been told by people that until they got to know and understand me, they thought I was aloof/weird/on-another-planet/on recreational drugs etc etc...
    Thanks, Pippa

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  15. Hi Pippa,

    Why exactly do you expect the tax payer (via Work and Income) to fund your choice of having another child when you own a house? It seems fair to me that Work and Income expect you to draw from your own assets first before seeking income support.

    A benefit is only meant to be for emergency situations, not a planned out situation like yours where you're consciously making a decision to have another child knowing that you can't do it without expensive support.

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  16. Because Scott, as I said, I AM a tax payer - as is my husband.
    One who has never asked for help before and I think it is not unreasonable to ask for help for a very short period of time in the scheme of things.
    Epilepsy currently doesn't qualify for assistance other disabilities/sicknesses or even people with twins get because of cutbacks.
    As far as my house is concerned, the mortgage payments are cheaper than rent for the same small house would be.
    After all of the tax I've paid, all the interest while paying off my student loan, you think selling my house would be a fair exchange for what could be a matter of weeks?
    I am no 'dole bludger' and at the end of the day I am only asking for what others are entitled to.

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  17. Hey Pippa,
    Would you like me to set up a Facebook page for you?

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  18. Hi Phillipa,
    I have just seen your letter in Treasures.
    I'm a mum of two now (a nearly 4 year old and a 10 month old) and have lupus (an autoimmune disorder) which can manifest in a number of ways but for me means I am fatigued most of the time, I catch bugs really easily, and if I am under enough pressure or overworked I get arthritis badly. In both my pregnancies the lupus was suppressed and then after my first son it rebounded badly and I got really bad arthritis. Getting enough sleep has been a big problem, especially now we have two kids, and it's rare for both kids to have a nap at the same time! Various things have helped us over the years though it's still been very stressful each time we have had a child (with our second one our marriage broke up for a while). I managed to breast-feed the longest with my first son, but we found after a few months that my husband doing a night feed with a bottle of formula made a huge difference. My second child was on formula from three months roughly so this means that my husband does all the night calls, including for my nearly four year old who can be unsettled in the night. While he doesn't need as much sleep as me to survive, he is chronically overtired and at times we look at changing how we do this, but he is still keen to do any overnight "work".

    I'm really surprised that you don't qualify for health system funding - I think this is disgusting. When it became apparent that I was really struggling with my first child the health system funded me for some cleaning/domestic help (though finding cleaners when we lived a little out of town proved to be almost impossible). I also fitted the profile for a Plunket service where you can have one-to-one visits to your home over a long period, an absolute godsend when stress and loneliness was getting to me. With my second child I tried to get the hospital social workers (maternity) to assess me before the birth, given that it seemed likely I might have the same problems again. Unfortunately the actual needs assessment was during the first few weeks after the birth and took up a lot of precious time, but eventually they approved me for some domestic help again. Your needs don't sound that different from mine, in that you likely need help around the house in those first few months. If you had fitted a mental health service profile (eg post-natal depression) you might have been eligible for carer support also, giving you support for other things around the house. I used to work in the health system and I am very surprised that epilepsy does not qualify for help after birth - it doesn't sound like the issues are that different from say someone with my condition. I will say, though, that I've pretty much had to initiate what help I've had because the health system in general is not very interested in preventative planning, and there isn't enough understanding of what it is like to have children when you have serious health issues. I can relate to what you said about wanting to be like other mothers who are fit and active, or at least seem to be. The hard thing for me since I have had lupus is that noone can see it. I've spent a lot of my life feeling very tired and sick some of the time, and this has had a lot of associated guilt. I generally need a lot of rest and sometimes do feel like a lesser person next to other parents who have lots of energy. I belong to a Plunket coffee group and that has been really important in keeping me afloat and giving me time out with other parents. (.....continued in next bit)

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  19. The other main thing that I found helpful was leaving having my second child until my first was a bit older. This way you can use kindergarten/childcare (unless you live too far out of a town) to give you a break and time with your new baby. We qualified for Winz funding for in-home childcare which you may not, but once your child turns three anyone can access the free 20 hours preschool funding, which means your first child can have structured time with somebody else every day. Also you don't go through as much of an emotional and psychological shock with having your second child. If enough time passes you approach parenting for a new child with a lot more confidence and awareness than you had the first time round.

    Hope some of this information has been helpful. While my disorder affects a reasonable number of people, it has a fairly low profile and I don't know anyone else with it, which has been quite hard over the years. It's really good that you are reaching out for help. Keep fighting the good fight!

    Jocelind

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  20. Hi Josalind
    I am so sorry that I haven't responded to you earlier - you can't imagine how useful your mail has been. It is very helpful to know what is available to others who haven't been crossed out out 'en masse' by the Ministry of Health.
    The first application to the Minister of Health by my MP Trevor Mallard (with a support letter from my neurologist) was rejected.
    Mr Mallard has reapplied for me with supporting letters from both my neurologist and my obstetrician, however we aren't holding out much hope.
    So - I have a meeting on Thursday at parliament buildings with Trevor Mallard and Grant Robertson (Labour spokesperson for Health). I'm not sure what this will achieve, but I hope I will not end up having to go public!
    Thanks again Josalind and stay in touch!
    Philippa

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  21. hiya. i saw your letter in the treasures mag. i too am "falling between the cracks" and also have the same prob ,in that my condition is invisable so even thought im v.sick no one can see that.i wish people cld c how much i suffer. i caught glanudular fever whilist pregnant with my son and that developed into m.e. M.eis alot like lupus or the last months of a aids patient....it feels like im living with the flu everyday. my husband also has fibromyalia(an autoimmune arthritis)and multiple bowel and allergy issues.
    after having my son, I too got pushed out of hospital before i was ready (i still had glandular fever and fainted after the birth).....its soo frustrating that we are both severely dehabilitated and struggling without any help, i have been asking for homehelp for over a year now,with dhb homehelp we arnt old enough to receive help and with other services they will only give us help if we are high needs (as in help with showering etc).winz wont help either. the dhb did however give us temp homehelp for arnd 2months just before my baby was due. but in our case we need in longterm.the dhb said they will do this for domestic emergencies
    anyway sorry for ranting. just seem s like theres so many loopholes in the system when you are unlucky enough to be in a situation like this:) :) ps. how was the meeting?
    we are also getting childcare subsidy from winz which helps but i wld rather use my small amount of energy with my kids then cleaning.
    regards hayley richards :)
    hayley richards

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  22. Hi Pippa,
    haven't checked this website for a while so have only just seen your reply. Thanks for your kind words. I hope you have made some progress in getting some help with this issue in the meantime. It is surprising to me how difficult it is for some people to get the help they need (including the post above this). perhaps I'm luckier off in the region that I'm in?

    Jocelind

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