Heir and a spare?

I’m at a point in my life when it’s decision time- do I want a second and final child? I’m a cautious sort so I’ve prepared the ground work namely appointments with my consultant, a year of folic acid and blood tests. Dr O’D has written out a drugs regimen for pregnancy and has ushered me off to get with child. It’s not been simple to get this far and age is conspiring against me. There are a few additional drawbacks which are making me hesitant. I’ve almost got to the stage of taking my driving test after 20 years of on/off lessons. At 10 weeks pregnancy my dosage has to increase. Legally I have to stop driving…. Also I didn’t have a great birth experience and post natal issues still haunt me.

Life is in a good place, I’m seizure free and independent. I pass for a total normal but pregnancy complications could unmask me. One seizure shouldn’t affect a foetus, repeated fits and then it’s serious. This is assuming that nothing happens to me.

If everything goes to plan including my preferred c-section birth will I have the feeding battle which profoundly damaged my physical health and emotional wellbeing? Will the baby be healthy or will it be in the tiny percentage?

On the other side of the coin my husband would love a baby, my daughter would love a sibling. She’s the only one who is an only one in her class. I might get to right the perceived wrongs and get some sort of closure.

Is it worth it?

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Sex is not just for normals

Contraception is always a difficult issue for women with epilepsy – some hormonal pills can make some anti-convulsants less effective and vice versa; fiddling with your hormones could prompt a fit; condoms are not 100% reliable; but an unplanned pregnancy is a dumb idea too!

After being fitted for a diaphragm and not having the courage to try it out, I opted for the coil. I didn’t realise that there were 2 types until I went to the GP. The IUS has a negligible hormone release so it can lighten periods as well as prevent pregnancy; the IUD is copper which basically kills sperm. She recommended the IUS because the IUD side effect is heavy bleeding which most women seek to avoid.

I was just about to sign off on this when it occurred to me just to query whether the tiny amount of hormone would interfere with my medication – this was something that she hadn’t considered – no she said but there was a small risk of a fit at the implanting of the IUS. But it’s just small so don’t worry….Any epilepsy associated risks with the IUD? She said no but who wants heavy bleeding…I went for the IUD. Even a small risk at the insertion of the IUS coil was too great a gamble. My life as a normal would be derailed by that sort of flippancy.

But this is just the functional part of sex rather than the sensual or fun. What of our recreational sex lives? I’m not sure that society thinks women with health conditions should or do shag. Maybe we should concentrate on coping with the pleasures of maintaining a normal life. I find it interesting that an argument for prostitution is that it provides a necessary service for disabled men to have the sex that they are entitled to – but obviously denied due to to their condition. Nobody ever talks about the rights of women with health problems to have access to a gigolo. Why don’t the advocates for the sex industry use us as a powerful argument for their legitimacy? Maybe we want to express our right to perform a blow job which is denied to us by regular men because they don’t like the thought of a woman with epilepsy potentially having a fit and biting off their penis.

For every woman confidence is a big part of finding a mate and entering a relationship. If you have to bear the stigma of epilepsy then it can be difficult to admit. It’s almost as though you feel like you’re letting the other person down – fraudulently leading them to believe you are a normal when actually a special. Their dreams of blow jobs and sex on tap fading with your crushing disclosure. We’ve got to a point where we trust them enough to accept us as a sensual person but ironically our double life can damage their trust.

We can’t win. Our doctors medicate our sex life and frighten us out of our sexuality to prevent a range of side effects; but potential mates fear our bodies anyway.

I demand my right to reciprocal oral sex – and all sex tbh – free of charge and without discrimination.

How about you?

Hail Caesar(ian)

Pregnancy was a eye opener for me in the lack of understanding in maternity services of the impact on women with epilepsy. Everyone has their own birth story to share so I’m not going into yucky details but a few things stuck out.

During the first meeting with the midwife – form filling basically – she never asked me about my epilepsy. She asked if I was taking any sort of medication – obviously I told her that I was on lamotrigine and folic acid. But she didn’t enquire about triggers. She didn’t tell me how to manage morning sickness with tablet taking or even how tired I would feel, which was a totally natural symptom in the first trimester.

She wasn’t incompetent but it did worry me. I like to be in control, I like to know the details – medical jargon doesn’t intimidate me. Give me the facts – tell me that I have a higher than normal risk of dying in pregnancy. It might scare your other normals but secrecy will not extend my life expectancy – tell me how to take reasonable precautions to avoid fits, don’t avoid the tough issues that will only be flagged at the 20 week scan – I know that my pregnancy could end in heartbreak.

Maybe I’m being unfair – perhaps she just wasn’t trained in epilepsy and didn’t know the questions or answers. Her skill set might have been as the contractions cheerleader. The most common neurological condition rarely happens to women of child bearing age…This was my first baby – I’m not the expert.

I was lucky that there was a women’s health neurologist at the hospital. Dr P made me go for regular scans and check ups with the obstetricians. It was a privilege to see the baby develop in those grainy images – most women only get a few strategic opportunities. I had been told or at least led to believe by the doctors, that I would have a caesarian section as a high risk case. My midwife told me not to bother with birth technique classes because I wouldn’t need them. Turns out that on the day the midwives on duty didn’t agree. I’m not sure that they even realised about my condition despite the bundle of paperwork in front of them. Regardless, they wanted me to go through the normal birth experience, really without explaining why, the process or with my consent.

If someone on the labour ward had asked me about my epilepsy then they would know that tiredness and stress were triggers; they would have known that I needed to take my tablets on time; and how gas/air panicked me as it felt like a fit was coming on – for me it was not the ‘lovely floaty feeling’ that other women experience – my brain was doing somersaults. Did it occur to them that erratic breathing in itself can cause a fit? They might have even monitored me regularly to check that I hadn’t had a major fit and lying dead on the floor. I was even sick all over the bed, according to the midwife this was a good thing! The one and only time someone has said that to me…

After almost 24 hours without sleep – I can’t even remember if I took my medication but I would have vomited it up anyway – the doctors called time and I had an emergency caesarian. I was so relieved – I felt back in control again and the situation felt professional. The anaesthetist was called Spiro, he calmed me down and chatted about his shift. I was a person again – he talked to me as a sentient being rather than to my cervix, which was rather mute that day.

In the end, the baby was removed in 10 minutes. It took 40 minutes to stitch up my abdomen and I was wheeled out of theatre holding my new daughter. This was my version of the perfect birth.

I will never understand how I went through a carefully managed pre-conception programme and pregnancy, with epitologists and an obstetrician, as a high risk case, right up to my hospital admission; then assessed on the delivery day as a low risk straightforward birth and sent to a birth suite; but ended up having an emergency operation in maternal distress as a high risk case. What were those maternity ‘professionals’ on – was I caught in the middle of a protest, a serious gap in knowledge of epilepsy, or an experiment?

If I am lucky enough to have another baby then I am booking myself in for the C-Section. No earth-mother nonsense – forget the scented candles. On this one occasion I am a hands up special – save the birth suite and womb cheerleaders for the normals: just cut me open like an alien autopsy.

We work in the shadows

Our consultants are like managers seeking to create a safer working environment for their front line staff – but more effective than the HR director or occupational therapist. It is interesting that in the modern workplace there is such an emphasis on tick-boxing for health problems or disability. I find it dis-empowering and worrying.

Psychologically I can’t tick the disabled box – I probably should for their inclusive stats – and I don’t want to declare a health problem. We have all experienced that moment when someone finds out that you have a condition and they don’t really treat you the same way again. It’s not even that they want to be more accommodating – make life a bit easier. Maybe it’s my interpretation – but I feel that they use it as a way to explain your behaviour, change your identity for you, even define your work ethic.

You are made to feel unreliable – that your capability will always be dictated by this unseen illness especially as it’s something that affects the brain – the most revered part of the body. ‘They made that decision because their brain doesn’t function properly – keep smiling so we don’t get accused of discrimination but just make sure that we take her suggestions less seriously – double check her work’. This is why I present myself as a normal – judge me as the person that you see or at least think you know. If I’m late in then assume it’s traffic on the road rather than a physical weakness.

It’s difficult for normals to understand that for some of us the act of getting up in the morning; travelling to work on time; and doing a full day of tiring stressful work, whilst being super professional, is a monumental achievement. Reaching the equivalent performance target as the rest of the team requires ten times as much commitment and courage to face the day. Nevertheless those of you who are out and proud face unconscious bias, which swings from underestimation of our talents to over-protective HR policies undermining those gifts.

A good colleague of mine, who has mental health problems that occasionally derail her considerable professional gifts, noticed a gap in the organisation structure – no one was really batting for employees with chronic health conditions or disabilities. There were the standard legal HR policies – anti-discrimination, risk assessments etc – but no advocate for the specials. She suggested this role and it was welcomed by the hierarchy, which was really positive and a great press release (the cynic in me says). I do commend her as she has put her own problems out there for scrutiny – but she has identified herself as potentially ‘unreliable’ – the common perception that mental illness is never really cured. Now, if she’s late into the office it’s because she’s on a low, rather than the reality of her teenager refusing to go to school and missing the bus.

Part of me is a bit concerned though in the wider sense – any dealings with her automatically put someone in the special category, they will be seen as vulnerable and needing ‘support’, particularly if it’s a hidden disability that was previously unknown by others. She is a feisty person and if she did see an injustice then she would fight someone’s corner to rectify the situation. But if you are trying to pass through life as a normal then sometimes we are happy to put up with inconveniences or difficulties to assimilate into mainstream society. In trying to challenge and remove unfortunate labels she has got a new shiny ID badge – but so will the people she endeavours to support whether they want it or not.

I don’t want a well-meaning advocate to expose my weaknesses – I don’t want the awful early morning meetings rearranged to suit my body clock; I don’t want high profile projects shared or delegated to relieve the stress on me; and I really don’t want them to cut me any slack when I under-perform because I’m feeling a bit funny.

Other people might feel differently as discrimination is a daily reality – for some people inclusion into the workplace means an honest conversation with HR or ticking the diversity boxes.

But for those of use who work in the shadows we really don’t want that light to shine on us.

Trust me – I’m not a doctor

I battle consistently to be a normal but I can’t hide my condition from the docs – to get a decent consultation you need to wear your condition as a badge of honour! Maybe it’s arrogance or confidence as I have no medical training but I think of myself as an expert on me.

I find it frustrating when medics try to tell me how I feel about things, how I should react, defining my own limitations when I don’t impose boundaries on myself. Sometimes dealing with clinicians is an out of body experience. It’s as though you are talking about a stranger, a third party who is not in the room but you are representing them as the responsible adult.

I’ve never had treatment plans through any of my GPs – only ever with a neurologist – so I go into appointments on high alert of any ‘meddling’. It’s usually along the lines of you haven’t been poorly for x years so do you want to review your medication? Er no! The reason I’m well is because my medication is perfect! Don’t experiment on me – you have a whole waiting room of impressionable people to try.

The patient- doctor dynamic is really interesting and can impact on your relationship. With epilepsy I think that trust is really crucial – and empathy. Don’t patronise me – I don’t want your ‘compassion’ or pity – but at least understand my coping mechanisms. None of my neurologists have ever made me feel like a patient – possibly because I’m not sick and there isn’t anything for them to cure.

During the darkest early days of sodium valproate side effects, my then neurologist Dr J greeted me like a friend – he always called me gorgeous and told me how trendy I was in my 90s double denim. For a teenage girl who was the size of a cow, with rapidly thinning hair and terrible skin this was a pick-me-up – none of the boys my age were giving me a second glance, I was a total special. I looked forward to seeing him as he made me feel a little more confident, just for an hour. These days people would probably find that bedside manner rather spooky and inappropriate but it was a comfort to me. I did find out after his retirement that he had a teenager of the same age battling a serious condition. I realised that he was speaking to me as a dad trying to encourage his child to love them-self.

These days a holistic approach to treating a patient is more in vogue – a new generation of medics who have been exposed to a different narrative of inclusiveness and the balancing of power in the doctor-patient consultation.

Don’t get me wrong I do respect my doctors but I insist on them hearing my story – if they don’t know me how can they treat me?

 

Maybe baby?

Planning a baby is daunting for anyone. Apart from the standard questions about fertility and is this the right time that most mums-to-be face, women with medical conditions face stark choices but also the most serious reality checks too. Of course if you have epilepsy, even without the medication aspect, there will be potential complications – maternal death during pregnancy through fits, and of course, as seen in the British news, a higher risk of fetal abnormalities. These are risks not inevitabilities though – that needs to be borne in mind.

My neurologist is a specialist in epilepsy – an epitologist. Nothing in life is ever plain sailing but did that make a difference to my preconception management? I have always wondered. I had always been told, and at uni most earnestly when the sodium valproate was reintroduced: DO NOT get pregnant without a consultation, you have a potentially life threatening condition and you’re on dangerous stuff. This diktat was enacted over 15 years ago when I was single and totally against having children – what happened to the advice for all those other women and girls on sodium valproate?

I didn’t need to see Dr O’D regularly – my medication was holding me – but I knew that an unplanned pregnancy was a bad move. I was a total normal and wanted to keep it that way. He and I had a bit of an awkward conversation about S-E-X, it felt like talking to my dad. However, he told me that I might have to make sacrifices with my health, I would certainly have to change my medication which could impact on my well being; but also that the whole process from pre-conception advice to being in a position to even try for a baby would take a year – and during this year of preparation I would need to take industrial doses of prescription folic acid, not the herbal remedy type, to lessen the risk of fetal neural problems when I became pregnant.

I did cry during my appointment. Not because it was a a longer process than I imagined – I’m not patient, if I make a decision it has to happen now – but the word ‘sacrifices’ hit home. If I decided to go ahead with pregnancy then I was definitely leaving the world of normals right back to the world of specials. I had been seizure free for 5 years. Was a baby worth the risks of death and disability – my husband and I decided it was although we never ever discussed them. It was just too much painful reality to accept.

Grand mal-formation?

For some reason this blog unposted itself so reposting now! 

As humans we seek to understand our environment – both physical and social; but we also try to control it – to make our lives predictable. Arguably this is a brilliant strategy which has secured our position of strength in the natural world. How amazing are we?!

Of course, life isn’t quite as straightforward- many curve balls are thrown at us. An unexpected diagnosis as a teenager was mine. I had chosen my A-levels and settling in to the first term of 6th form – everything was going well. I was a top grade student and was encouraged to flick through the prospectuses of the top universities by my teachers. To be honest I hadn’t made any concrete plans or even a 5 year strategy. I didn’t really know what I wanted to do with my life. I guess my reflection ultimately is that as a 16 year old it didn’t occur to me that having a health condition would have such a great impact on every aspect of my life. It wasn’t that my plans for the future would have to be forgotten or even that my dreams, nursed from the cradle, were crushed. In my innocence I thought that Epilepsy would vanish with a few tablets and I could go on my merry way through 6th form to Oxbridge and a glittering career doing something exciting. I couldn’t have been more wrong. Nobody mentioned side effects.

How many of us suffer side effects – not just medication but also social side effects? Losing consciousness especially in a public place makes us incredibly vulnerable and it is undignified – let’s not sugar coat it. Even in these post-modern times with all the medical science at our finger tips experiencing a fit as a person or onlooker is frightening. Some people have triggers or an aura as a fleeting warning, a lot of people – like me – are just struck down. So I can understand why medics, patients, family/friends want to reinstate predictability so we can once again control our social environment and function normally. I do wonder whether my character was truly formed into a belligerent control freak because of my fear of powerlessness through epilepsy.

From my vague recollections of being a teenager – I’m not that old but my memory was switched off by the medication for several years – the parental loosening of the apron strings was the holy grail. Greater independence, a front door key and negotiable curfews – even driving lessons. However I had to watch my friends enjoy these freedoms and like any normal youngster I pushed back against the restrictions. Understandably my parents were worried that I would be poorly and my friends wouldn’t be able to handle it but I lied about my whereabouts to them; I see now that being flippant about taking my pills on time, or losing my prescription on a weekend, was irresponsible both for my health and also for their stress levels; and also how much attention I commanded unnecessarily, which redirected away from my little sister. Another layer of ‘epileptical’ formation has made me very selfish.

Part of the reason that I find it so hard to accept my condition is that I don’t see myself as ‘disabled’ or ‘special’. No one so far has ever been able to convince me to embrace my condition positively – to me it is an affliction. Obviously I’ve never witnessed myself having a fit, others have had that pleasure, but I had seen visuals of other people. The thought that I look like that fills me with horror and embarrassment. Ironically or even perversely this has made me more determined to be ‘normal’ – I look like any other non-epileptic person (whatever that means) and I do exactly what I want – late boozy nights, extreme stress you name it – even though reckless lifestyle choices are my triggers! How stupid am I – if my brain wasn’t so manifestly excitable then there would be a strong argument of not possessing a single brain cell. No wonder my parents did and still do worry about me.

It could be argued that people like me perpetuate the stigma around the condition by not being open and honest because we define normal/normality as anything that is not epilepsy. Although most of my contemporaries and all work colleagues are unaware of my condition, this obviously was not the case at school. One of the really upsetting social side effects for me was being written off by my teachers. My alma mater still is competative and has high academic standards. The teachers and the pupils don’t do failure i.e. low grades or attainment. Everyone is sporty, studious and musical. We were shaped to consider ourselves as future captains of industries, leaders in whatever sector we chose. I think that the point was then that my condition threatened my school’s high expectations – without warning I was not going to meet their measures of success. A total shock to everyone including me. My medication totally switched off my brain – no fits thankfully but no capacity for learning either. I had to split my A-levels which meant staying on at school for an extra year. My cynical adult self thinks that perhaps my school could tolerate 2 poor A-level results rather than 4 all in one year. The league tables really mattered. One teacher tried to argue my case that I should have extra tuition at lunchtime so that I could keep up with the class. The head of 6th form refused her request because it would be unfair on the other pupils and give me an advantage. What a load of cobblers. I was seriously unwell which put me at a huge disadvantage. My headmaster, who was a good compassionate man, told my parents that I had become ‘zombified’ – a totally changed girl which upset him greatly. He had such high hopes for me which wouldn’t be realised. Everyone was basically grieving over the loss of my former self. I think that the crunch point came for me when I was told that my grades were now so low that the only universities open to me were the newly converted polytechnics. This was in 1998 with respect; those institutions are actually top notch in 2018. However I was devastated to be told that I could only apply for certain places as my aim should be for an unconditional offer – basically a university place regardless of grades. I had a good ‘CV’ because of my musical ability, Duke of Edinburgh awards, and voluntary work – so my grades were irrelevant to new these new establishments. But not to me. The final part of my epileptical character formation was grit and determination to never ever ever ever ever be written off as a hopeless case without ability. Even then I refused to be patronised and this has stayed with me into adult life.

Many social factors influence the development of our habitus from birth. I can’t pin my entire personality onto epilepsy. I had been in formation for 16 years already but my experiences did shape me.

I would be interested to know if anyone else has had an epileptical formation rendering them: a control freak; selfish/ self centred; reckless; stubborn; and a cynic? Or with a positive spin: has your formation made you: determined; stoical; single minded; realistic; and strong?