Elaine’s Story

DON’T BLAME THE BUTTER FOR WHAT THE BREAD DID!

I am a real person with all the usual problems of grey roots, forgetting my list for shopping, not remembering a really important event or leaving money in the bank machine.  However that would have been far too easy for the likes of me.  Instead I had intractable epilepsy and had turned into a pharmaceutical junkie.  I walked out infront of cars, fell off pavements, couldn’t ride my bike and had to ask people to put the £1 pound coin into the trolley because I couldn’t work out how to do it.  Thirteen different drugs in various combinations, 24 stitches in my scalp, broken ribs, lost career and tragically the deaths of my two little baby boys, Conor & Liam.  And then people would look at me, happy, positive, full of life, definitely not someone with that terrible ‘mental’ disorder – epilepsy.  And yet I was dying each day that I slid out of the bed into an abyss.

Who looks at lard as a miracle?  Definitely not me, ever.  I’m not stupid enough to fall for that toss.  That was for the facebook freaks who love to read about the jollies of this and that.  Don’t ridicule anything.  When you face an all encompassing blackness you may well turn towards the oil slick.

I was on a combination therapy of Epilim, Lamictal and Clobozam. The side effects were atrocious.  I had no support at all.  My family were my cotton wool and they snuggled up to me to kiss my war wounds better..  A tremendous pressure for them.  It was my family that brought me through multiple hospital admissions through A & E.  I was having one seizure after another.   I was referred to neurology services numerous times as an emergency.  No neurologists were availble.  There was a massive emotional impact on my children and my husband.  He checked that I was still alive when I was asleep.  They sent me wee letters of love but there were many tears as I was becoming more and more dysfunctional.  I was having petit mals all the time, was unable to follow a phone conversation, would have to ask what an object was, in the same way that a two year old would ask, I walked like I’d had a few vodkas with breakfast.  I could have fallen asleep while sitting on a pin.  I could no longer feel life.  I was living in a sepia coloured world filled with bleakness.

On holiday in France in june 2016 I couldn’t remember where the bathroom in the caravan was and repeatedly collapsed. There were signs of extraordinary neurological distress.  I walked into everything, was unable to speak with my normal coherence, was extremely dizzy, and felt that I was in a goldfish bowl.  I knew I was in meltdown but there was no one for me to turn to.  Having gotten my medical records I had become aware from a written comment by a neurologist that my past medical treatment was as good as it was going to get and all avenues had been pursued to him ability.  I had to have a wheelchair.  I needed to hold my head up with one hand so that I could put on my makeup and you know how important makeup and eyebrows are to us ladies.

When I arrived home I got worse.  I used a stick because my balance was deteriorating rapidly.  I was having problems getting dressed, and eventually couldn’t sit upright.  My muscles were losing tone, including my core postural muscles.  I spent a fortune on a new bed, oesteopath, reflexology physiotherapy.  Even a pyramid pillow.  I did my Christmas shopping in July.

August 2016 was my pivotal moment.  I was very unwell.  I had to go to bed.  My muscles were moving involuntarily.  I had been awake constantly for days  I couldn’t close my eyes.  Every drawer in my brain was banging open and I was being bombarded with images, yellow triangles, the signature of my plumber and a constant barrage of unrelated pictures as well as seeing inanimate objects moving.  My children, dogs and husband tried to distract my mind to see would the other things settle.  However my conscious mind was unravelling and I was rapidly losing my capabilities to function.  I was carried downstairs by my wonderful husband.  He sat me into a chair and I  fell forward.  One of my wee ones decided that I needed to go back to lie down.  And then, everything stopped working.  I crumpled & couldn’t talk.  An ambulance was called. I was locked into a body that wasn’t responding.  I told myself to stay calm and breath.  When I came out of hospital after a number of days I had two sticks and had to learn how to do things again.  I felt locked into my body.  No one knew what was wrong.  I thought I must be mad.  Now I needed a carer.  I had to have someone tend to me.  It was extraordinary.

I lay on the bathroom floor and cried until there were no more tears.  I was no longer able to partake in everyday things, shopping, ironing, being a mama.  Now what to do? Practicalities first.  Finish the christmas shopping, change names on some of the bank accounts and sort out documents regarding life insurance, health insurance and other correspondence.  I knew that my brain was falling apart in a a catastrophic way.  I then decided that there was a light still dimly alive and started to look at options.  I had seen a neurologist privately.  I had asked about B vitamins, meditation, fish oils, exercise and the ketogenic diet.  Even brain surgery.  Radical but I was at a ‘save yourself at any cost’ stage.  Obviously my neurologist was very non committant about anything.  Research papers played a major role in this one.  As for diet? Well, I could try diet if I fancied.  However I would have no medical support as there isn’t any here.  It was clear to me that other than pharmaceuticals I was on my own.  I chose to go and do my own thing no matter how mad.  I researched the effects of music, aromatherapy, meditation, hypnosis, electrolytes, minerals and multivitamins.  Even brain surgery.  I wasn’t deemed suitable for a vagus nerve stimulator. I now was ready to implement anything that took my notion.  Cheerio old Elaine and roll out the person I was meant to be.  Slip in the oil and get used to a bacon butty without the bread.

I went from research paper to research paper, university to university.  I banged on doors.  I cross referenced everything I found and emailed many people.  Emma, I even found out about you and got in touch for a moan.  I read books and generally ate information about the scientific basis for this radical eating plan.  I needed to grasp the foundations of its workings before I was ready to begin.  It was time consuming.

I came to the conclusion from all that I read that basically I was a diesel engine that required diesel and not petrol or my engine would blow. . My engine had blown, almost destroying me because I hadnt been fuelling up accordingly.

My diary for my start date contains all of the personal information as to why I needed to do this.  I wrote it in very shaky, old ladies handwriting.  One of the things I wrote about was being in the hospital not recognising my children & seeing my husband cry and not being able to hug him.  My soul was shattered and I was broken.  Down but not out.

I withdrew all sugar.  Easy?  Definitely not.  Nature’s sweetie shop is fruit chocolate & veg.  The healthy plate, that had been the mainstay in our house, had to be psychologically binned.  That’s difficult.  I also had to think ketones, not calories or fat.  If I wanted ketones to keep my brain happy then I had to fuel with intelligence and knowledge.

Sugar withdrawal is like the DT’s that addicts have.  You shake, cry and are generally incapacitaed mentally and physically.  I had no idea that i was a junkie.  I really didn’t.  I sure as hell didn’t want to do this, but I knew that I didn’t want to be dead.  I wanted to sleep properly, dance and sing, read books, feel a sunset, laugh, hug, dream and have fun.  I was ready to dance with life.

How long did it take?  I had 49 years of neurological problems, physical damage and an emotional rollercoaster.  I had developed a superficial postivitity and was able to put on a façade of normality for short periods of time.  So I expected an incremental improvement and was prepared to accept that it may be only an extra medication.  No changes.. . For 14 days.  And then, I just cannot explain what happened.  I don’t even intend to try.  You will remain sceptical as you have not looked through my eyes.  It is the complete antithesis of all that you have been told to think.  And yet we are born in a state of ketosis and our liver is adapted to produce enough ketones to keep our brain happy for a millennia.  It is not a new concept.  I am not unique.  My neurolgical system was in a chemical storm.  The best neurologists could not help, the pharmaceutical companies were making great money out of me, the nhs was sending out ambulances to my house and I was bed blocking.  And it all had been making things worse despite all their best intentions.

In the middle of this nightmare there it was, ‘’’’’’’real butter’’’’’.  Not the fake healthy stuff.  I fell in love.  My world changed.  Two weeks that’s all it took. TWO WEEKS.

The first thing that I noticed was this gentle calmness.  I felt that someone had sang me a gentle lullaby.  My whole system was tranquil, smooth & I was different.  Week by week it progressed to a more stable brain.  The daily petit mals became more subdued.  The interruptions in my thought processes hushed and then my seizures abated.  No tablet had ever come close to what was changing within me.  My engine was definitely diesel.  Sugar in its many guises, bread, low fat & low cholesterol pretend butter and jam were enough to cause a chemical imbalance that could put me on the floor to bang my head and do a body jig.  Two weeks that’s all it took for these changes to begin.  By three months I thought I could run a 4 minute mile and that I was a living, breathing, all singing, all dancing Beyonce with a hoover.  I was in everything & at everything.  Music recitals, drama, talks, & a maths o level.  I did puzzles for fun.  I even went to hear talks by barristers.  No more inertia.  I could look at stars without falling over.  I laughed with a joy that I hadn’t felt for a long time.  I was alive and really couldn’t believe it.  As for my pilates class.  Well I can do things now that I would never have dreamed off. My instructor is astounded. I offer my help to anyone who needs it because I can now.  Each person I talk to, spiders that hide, twinkling stars, walking in the wet grass with no shoes on.  It is all so fantastic.  I am not jaded like others my age.  My life is exciting even in the innocuous moments.  My mantra now is the Robbie Williams song “I Love my life”.

I was on a fast track to being in control of my destiny.  But I had still had no help.  This eating routine is a medical treatment and everyone needs a wee bit of professional knowledge whispered in their ear to aid their understanding of themselves.  My family were really and truly phenomenal.  My brother in Belfast was the one who’d ring and tell me to go fry an egg in some bacon fat.

But there was no one for me to talk to.  My own doctor nearly fell off his chair laughing when I went to see him.  I pleaded insanity but being a great man he decided to help me on a road to god knows where.  I had sorted out my own diet and he referred me to see a dietician to run through my eating plan and check out any dangers. Unfortunately she hadn’t heard of it.  He also organised blood tests to check for any problems that may be occurring as a result of this radical change of eating.  I am not only healthy physiologically, I am healthier that I should be for my age.

So I just carried on myself reducing my carbs until I felt at my optimum.   I was eating approx 14g per day alongside 140g fat. . There wasn’t any  available neurologist for me to see.  Northern Ireland is a bit strapped for cash at the moment aalthough the services  are done and out they are doing the best they can.  So I had to beat a few doors down.

I spoke to Rare Disorders Group NI.  They explained about how to go about getting  funding to help me to see a professional team.  There is a ketogenic department in Dublin but no cross border agreement and they don’t offer private appointments unfortunately.

It took a year to get a referral.  I feel very fortunate to have gotten one.  I also got the financial funding to travel from NI to Surrey from my very exceptional neurologist, John Craig.  He sorted everything out for me in a wonderful way.  I am forever indebted to him and all others involved.  He doesn’t know me or what makes me laugh.  I am only a wee lady who calls in for a bit of a craic once a year.  And yet he recognised something of great interest and significance.

The NHS has invested extraordinarily wisely.  No ambulances, no bed blocking, no video monitoring, & two drugs taken away.  No matter who you speak to no one will entertain the idea that this is coincidental.  Inspector Morse believes that ‘there is no such thing as coincidence’.

My team…My team…. wow! I have a team!!! Dr Dabadyn, the outstanding,  knowledgeable and very beautiful Sue Woods, wee Val with all her motherly skills of giving a hug wrapped in her emails and Teresa who has helped me out immensly . They have helped me so wonderfully I just can’t believe my luck.  What I began on my own has been honed with a skill that can’t be read about.  The experience and knowledge that is offered aids an understanding of yourself.  The little things that go wrong within your are listened to and tweaks made to your eating plan accordingly.  Best is the  food diary that is a real pain in the ass. This is the head honcho that can unlock problems such as a heightened sensitivity to a particular food, or where fat needed to changed in order that the supply of ketones is constant.  An example for me was peanuts, strawberries and paprika.   And who would have thought of those… ?

And the day that it was suggested that I took away fish?  Well I nearly died laughing.   I hate fish with a passion.  Same with celeriac.  Let no one tell you that celeriac makes good chips.

I regard myself as having an extreme allergy to sugar metabolites.  I check everything and can still make mistakes whether it is vanilla essence or pickles, cough medecine or painkillers, butter blends and corned beef.

I have turned into nigella lawsons more stunning sister!  I wish.. I have accumulated so many recipes.  I have come away from trying to make my meals look like meals.  Food is simply fuel.  So if I want to sit and use my dinner numbers, all 5.5g carbs, on chocolate cake & cream then I do.  I have to be a bold girl sometimes.  Boldness is what maintains you on this diet without stepping out of the boundaries that you have. Even if my chocolate cake is eggs & coco powder. Beggers can’t be choosers and all those things my granny would have said.  Mind you she used to tell us not on to sit on cold walls or we would get piles.  Or to take off our coats inside or we wouldn’t get the good of them when we went back out.

The biggest hurdle I have had is the attitude of others.  People fall into two categories.  The first completely ridicule a proven eating plan as being rubbish and want to argue a point. Or they want chemical pathways and their associated equations.

The second group want to talk about nothing else.

But the amazing prevailing problem is that people don’t want to change.  I didn’t.  I wanted to eat wispa bars and get squirty cream straight from the aerosol.

If there were two lines of treatment at a hospital and each had a name, there would be a queue at the one offering tablets.  The other one offering personal change would have no one waiting.  I really didn’t want to be at that counter either.

I am still the same person except that i like to eat knobs of butter.  I do not feel the need to convince anyone….. but I know that 30% of people with epilepsy are in the same boat as I was.  What about those girls & boys, mums & dads, sons & daughters.  All the people with no names to you but are loved by others.  I am now a cave woman.  I run out into the world at speed.  If I cant make it I don’t eat it.  If I haven’t seen it cooked I walk on by.  This can be difficult when eating out.  Well I don’t… I drink tea while people eat.  This is disconcerting for others.  They see eating as entertainment and socialising.  I have absolutely no problem with this at all. I do all the talking while they are stuffing themselves.  There is a funny thing that happens to your memory of food and their associated smells?  You forget. And that is when you are free.

If life gives you lemons throw them away and get some bacon.

No scrap that wee idea.  A steak, a bbq, a man to cook it and not forgetting a teenager to wash up with reluctance.  That is the moment that you laugh loudly like a MAD girl.

Elaine Rogers