I have been waiting patiently since the beginning of this year to write this blog, although on refection I’ve been waiting ten agonizing years to write this.
August 28th 2009 was the last time I felt even remotely healthy. The day after and up until January this year I have suffered daily from debilitating brain fog and crippling fatigue, both extra-intestinal manifestations of inflammatory bowel disease. These two symptoms had been so severe in their relentlessness that I had to give up the work I loved as clients ceased to call - knowing I couldn’t commit to completing projects. I lost touch with dear friends as I reluctantly stopped returning their calls; the effect being my social life came to a slow and lumbering halt. If I’m honest I ceased to enjoy socializing many years ago as the brain fog made social interactions painfully awkward, which in turn led me to become socially anxious, so of course I found myself withdrawing.
My symptoms had stayed unrelenting up until the beginning of this year when I was referred to a consultant neurologist after a period of extreme dizziness and fatigue that left me bed ridden. I bore little hope of progress from the costly, private consultation as most of the research regarding brain and the gut were positioned around dysfunctional digestion (IBD, SIBO, gut fermentation). However, the consultant immediately asked me a series of intriguing questions:
Do I sometime crave carbs?
Do I have ‘undeserved’ hang overs from small amounts of alcohol? Am I constantly thirsty?…………..
The consultant’s conclusion was I have symptoms of migraine without the head aches. He has observed before with IBD. Who knew?
The consultant’s protocol was simple for me to implement, I was to:
Consume 3 litres of water daily
Avoid all caffeine
Avoided all chocolate
Reduce carbs and sugars.
Take 75mg pregablin daily
So with some reluctance I began the protocol and at first I didn’t notice any significant improvements. But slow and steady wins the race. It seems to be working. Not because I feel all of a sudden well, its like watching your children grow up, other people observe it more starkly as they have periods without seeing them. But my wife will say – ‘are you sure we can’t go, not even for an hour? Are you sure you’re too poorly cos you actually seem ok this week?’ and give me a ‘gentle’ nudge in the right direction by challenging my fixed mindset. So when I observe my activity, actually I am in work more, I am writing music again, I am actually going (and enjoying) nights out, I even made it to a wedding. So something must be right. But its hard to re-set and change your mindset after ten years from ‘I can’t’ to ‘well maybe I could’… and I’m not promising plain sailing. Its not perfect and I have to force myself out of the comfort zone, recalibrate, re-think the possible and be totally grateful that I have the support, education and where-with-all to be able to find solutions to my ill-health… but that’s another subject matter.
For now I’ll concentrate on a growth mindset as opposed to fixing myself in the land of the sick and see where we might go.