Umami, Amines and PNH (Part 1)

It seems so unfair, over the last weeks PNH symptoms have flared up again and I have had to go back to the drawing board to try and pinpoint what may have triggered it off.  I could put it down to all the stress of moving during the most frantic season of the year, things not working while the world was on holiday not to mention trying to stop the flu that’s trying to grip the country in a head lock trying to grip me too. I could, but I need to cover all bases here especially taking into consideration that it has also waxed and waned during this time.

So as part of my move into our new home I invested in some new bits and pieces to ramp up my healthy lifestyle gig.  A pressure cooker to start making my bone broth in, some gelatin to heal the gut and liquid stevia so that I could wean myself off the sugar. I was good for the first week or so and then BANG!!!! Irritability, spasms, aches, tears, tantrums – OK I also cheated because when I feel bad I also eat rubbish – which I know has to stop – God help me please.  But I have learnt enough about my body to be able to pick up what is and isn’t affecting me and begin to read how. Something was different and I prayed that it wouldn’t be the gelatine. I wouldn’t mind giving up the stevia, but the gelatin – I could use that to make all kind of wonderful things – plus it replaced the eggs which I can’t eat at the moment plus it was making my hair and nails grow. Continue reading Umami, Amines and PNH (Part 1)

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Soaring like the Eagle

This is the second part of my as yet unpublished book on experiencing Biblical Wholeness, you can read the first part here

eagle-and-a-yellow-decline-a-soaring-eagle-above-oceanA journey of healing that leads to freedom

As a Psychology teacher, teaching the psychology of stress was an important part of the curriculum.  I taught my students about the stress response, the causes of stress and how to manage it;  I even  joked that teachers have one of the shortest post-retirement death rates but I never stopped to examine my own experiences of stress until YAH gave me a wakeup call.

I can’t remember when it first started but gradually I began to notice that my general health was declining.  I seemed to be constantly falling ill;from colds and flu that made me take days off from work to being tired, agitated, angry and forgetting things, I began to notice that I was not ‘myself’ at all.   I cannot forget one incident where I even had to be carried away by ambulance men in the middle of the teaching day because I had somehow managed to sprain my back.  I was in the middle of class and I turned to write a note on the board and as I stretched upwards I froze in excruciating pain.

I could hardly move.

I turned myself just enough to look at my students quietly getting on with their work and said in a very calm voice:

“I’ve just hurt my back can someone go and get a first-aider!”

And guess what their reply was?

“Miss is this a psychology test?”

At that point my calm slipped a little, I guess it was the fear that I wouldn’t be  taken seriously, so through slightly gritted teeth I said:

“no, this is not a test I really am in pain, can someone go and get a first aider PLEEEEASE!”  and off they went.

That was me through and through, I was queen of calm back then and I thought it was a good thing but now I realise that it was  faulty coping strategy which actually cost me my health!  This was yet another example of continuously pushing my body and striving for perfection which negatively impacted on my well-being!  After a while, I began to experience muscle fasciculations and pain across my body, I didn’t realise it then but my body was talking to me telling me to stop and rest; unfortunately I didn’t listen. Continue reading Soaring like the Eagle

Cramp Fasciculation Syndrome an autoimmune story

*** This post has been updated, please see the notice at the end.  Thank you***

The last week or so has been an immense struggle for me, recovering from the flu has affected me more than I realised which makes me think that my health condition is immune-related.  I actually did not want to write about this today, I wished I could be more positive and give more upbeat advice but the truth is that I have good days and very bad days and coming down with the flu has seemed to exaggerate my symptoms ten-fold.

So what exactly is wrong with me, then?  Well, to be honest no one actually knows but I have been given varying diagnoses and I have chosen the one which seems to reflect my symptoms the most.  According to a Neurologist at St. Bart’s London I have a ‘minor’ form of Peripheral Nerve Hyperexciatability disease called Cramp Fasciculation Syndrome or Benign Fasciculation Syndrome, you can find out more information about the symptoms of CFS here and here.

I accept the fact now that Cramp fasciculation Syndrome may be an auto-immune disorder because of the huge spike in my symptoms prior, during and after coming down with the flu.  I also often experience a worsening of symptoms just coming up to menstruation and wonder how this could be linked in to the immune response, some experts argue that PMS (pre-menstrual stress) can create a vulnerability in the immune system due to the change in hormones and the build up of toxins ready for release.  This does make some sense to me because my symptoms tend to subside going into menstruation.

I also notice that stress in general aggravates my symptoms and this may also explain why I feel so much worse pre-menstruation and when I am feeling ill.  There is much to be said about the negative effects of stress on our overall well-being, chronic stress has been found to suppress the immune system which in turn can give rise to a number of modern day illnesses that we experience such as cancer and auto-immune illnesses.

So the question for me is two-fold.  What do I do now to alleviate my symptoms and how do I keep on trusting and relying on God when my body wants to play up?  If you’ve researched a little about Cramp fasciculation Syndrome, you’ve probably found that there are different types of pharmaceuticals available to try to suppress or manage the symptoms, back in the day prior to God’s revelation concerning my body being His vessel I was prescribed something to enable me to sleep, but it worked short-term, in the long-term I experienced some negative side-effects.  So I am very adamant on trying to deal with Cramp Fasciculation Syndrome or whatever it is naturally.  I have tried a number of natural supplements including a Spice supplement which cured a previous patient of CFS but it didn’t work for me, I have prayed about this extensively that God will open my eyes to see, my ears to hear and my heart to understand His desire for me in this journey.  I have a few things which I currently do now but will post about them at a later date.

I do believe that God will heal me and this is part of my affirmation, (read the First day of my life) but I really do need the prayer and support of my brothers and sisters in faith to get me through this time.  Hopefully, next time I blog I will have something more upbeat and positive to say.

Update August 2014.

It has taken 6 years to be diagnosed with peripheral nerve hyperexcitability disorder (PNH) and to find out that it is actually an autoimmune condition.  During this time I have learnt how to manage this illness without any drugs and have had some fantastic days being symptom free as well as some rough days, mostly I operate at a 7 out of 10 – I am aiming for 9 by the end of the year.  I have been prescribed anti-epileptics, however since receiving them a couple of months ago I have probably only taken 5, mainly because I would rather not take medication and secondly I am able to do well in the most part without them.  I use diet, natural supplements/herbs and faith medicine to support and heal my body.  Please visit my CFS page to find out my top tips for kicking CFS/PNH where it hurts.

Update February 2017

Since my last update I am happy to say that apart from the sweating symptoms the fasciculations are mostly gone or not noticeable unless I am stressed in some way. I rarely take my medication and when I do it’s usually the minimum or close to minimum dose and that’s only if I am pretty stressed through not being good with my diet (gluten, corn, dairy, chocolate) or have fallen ill but, saying that, I caught a cold this week and I have had very little if any symptoms at all! I take this as a sign my immune system  is settling down and healing and I truly thank God for that.

I share this with you to encourage you and give you hope, when I first started my healing journey I didn’t believe that I could be where I am today. But today I DO BELIEVE and I believe that there is even more to come.  I would focus on building up your belief around healing as that will take your mind off your body and allow it to begin it’s healing process.  I don’t know if you are a man of faith but my trust in the goodness of God has been so important in decreasing my stress load and allowing me to heal.