GAME FACE

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I wrote the following on a Facebook Group for people with ME/CFS:

 

May I share one of my pet angsts?

Folk who don’t turn up on time! Today it’s my solicitor.
I prepare myself carefully for the appointed hour. You all know what that involves. As the minutes tick away afterwards, I can neither rest nor do anything else besides behave like a meerkat sentry.
Now 28 minutes and counting…..

 

I received a lot of supportive, empathetic replies from folk who understood my predicament, the finite nature of my resources and the knock-on effect for my health. There were a couple of unexpected replies that took me aback a bit and got me thinking. One chap said: ‘ you’ve a Type A personality, google it’ and another lady kindly outlined her strategies for filling in the time when other people are late: reading, knitting and so on.

So, if this lady can calmly adopt distraction strategies, why can’t I? Is it a product of my personality? Can I make any changes to benefit me?

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Normal working day

It then struck me that, for the majority of my adult life, being prepared and alert has served me very well. I’m accustomed to getting in the zone, putting on my game face and gearing myself up to respond to all possibilities. Quite literally putting on the war paint as it was a standing joke in the office that ‘Mary must have a tricky meeting today, she’s wearing red lipstick!’

Similarly, at home, with sole responsibility for 3 children, being alert and responsible at all times was entirely appropriate and useful.

And there is nothing wrong with this whatsoever.

Only, I haven’t worked now for over 4 years and my youngest is now 14 and can manage most things himself ­čśë

Being in a very alert state drains energy rapidly, introduces adrenaline and can be sustained for variable but always limited periods of time before I start to struggle in a variety of increasingly unpleasant ways. Then there’s the recovery…..

I think becoming aware of this is the first step to doing something about it. It would benefit me enormously to keep relaxed no matter who’s visiting and whether they’re on time or not. At the moment, I’ve no grand plan as to how I’m going to reverse decades of ingrained behaviour but I guess I’ll start on it with my next meeting tomorrow.

All ideas, comments, thoughts and suggestions are very welcome!

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IF AT FIRST YOU DON’T SUCCEED…..

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progress

Keen observers of this blog might have spotted that I’ve been somewhat reticent on the committing thoughts to the ether front. Not that I’ve been entirely idle in the last couple of years, just not sure that writing about it would be valuable to writer or reader. I’ve decided to give it another go and thought I might start with a brief overview of various steps I’ve taken in the quest for knowledge, treatment and recovery. In short, I’ve employed the services of a health coach, a doctor of functional medicine, and a psychotherapist. I’ve had a number of biochemical tests, the results of which have helped me understand a few things that are amiss, some of which I’ve been able to do something about. The coach and psychotherapist have helped me deal with the enormous challenge of ┬ámanaging a dysfunctional nervous system.

So, what did I discover that I could act upon? Quite a lot actually: vitamin deficiencies, mitochondrial dysfunction, food intolerances, the presence of and sensitivity to toxic chemicals especially lead and mercury, iodine deficiency, neurotransmitter imbalances, chronic infections, chronic hyperventilation and so on. It’s a source of deep concern to me that the NHS does not conduct these tests. Who can say what my prognosis might have been had mercury been identified as an issue when I raised it in 2006 as a possibility?

What steps have I taken? My diet has changed radically. It’s probably easier to list what I do eat: meat, sardines and mackerel, vegetables, potatoes, nuts, seeds and a handful of berries. I drink only filtered water and ginger tea. For a treat Ombars and Deliciously Ella energy bars. I lost over 3 stones in a year despite being horizontal most of the time. As well as being intolerant of wheat, gluten and dairy I’m off -the-scale allergic to eggs which I’d never have guessed!

I’m also on a regular supplement regime, and another one, pulsing on and off, to try to rid my body of the mercury which is stored in my tissues. I did try an infra red sauna which is highly recommended for sweating out toxins. Sadly, I had a truly unpleasant reaction and am unwilling to give it another go right now. The main thing I did was have my amalgam fillings replaced, over 4 intensely stressful sessions.

I’ve also added self-hypnosis and yoga nidra to my battery of relaxation techniques.

Am I better though? After all, that’s what I want. I think it depends on how you define ‘better’. If it’s overall function, then the answer is no. My ability to perform normal activities remains as grossly impaired as before. If it’s about coping better, having more knowledge and understanding, and being more confident in the choices I make then the answer is yes. Mostly. Largely, it remains as it always was: walking on quicksand, with no certainties, no baseline of ‘safe’ activity levels and a sense of keeping going, doing my best with what I’ve got.

All of this is ongoing. I’m due to take another test on my hormones soon and will be repeating the mercury sensitivity test. I don’t consider that the time and considerable expense have been wasted just because I am still very ill. The knowledge I’ve amassed alone makes it worthwhile. I live in hope that, over time, the small changes I’m making, or one I’ve yet to find, will finally unlock the big door marked ‘Healthy and Well’.