Thursday 14 February 2019


Who are you, bug of my gut? Why do you wish me to be your home? You have turned my body into a battlefield and I look nothing like a warrior anymore. I am the slain defeated soldier, wishing only for the earth to open and swallow her whole. 

Campylobacter. Another name acquired to add to the list. Did you know it is a common enough bacteria mostly found in poultry? Chicken specifically - factory farmed, sad toxic little chicken... but also the plastic packaging which contains the chicken, and any fresh produce which comes into contact with either. So really, just about anything can host the little devils. Many people in the UK population have had campylobacter chomp away at them for a day or a few days or a week. But the normal body expels the unwanted intruder ... 

Perhaps we should all be vegans but we have developed such a deep and passionate art for cooking throughout the ages and embedded in every culture and nationality, that to erase meat and fish for the sake of the occasional gut attack, appeals to a select few.  We know we contain bacteria within us - just as we ourselves once were bacteria... 

Then there’s your tricky antibody deficient, immuno suppressed lupus patient. 

I had mysterious bouts of sepsis several times in 2017 until this bacteria was finally discovered in my bloodstream - where it should not have been. This is supposed to be a strictly gut bug. We pelted it with IV antibiotics and thought ourselves in the clear. But all through last year I have been trailing behind a sense of weariness, an unwellness hard to define. Was my dosage of Rituximab too low? Too spaced out? Did I need a new drug added in? More steroid? 

I travelled to the East, and seemed on the surface to have managed miraculously well... but every evening and by nightfall I was close to tears with whatever it was that was battling away inside of me. As soon as I returned home from Singapore I went into an exhausted depression under my duvet, and thence into the grip of fierce abdominal pain. Was it my kidneys finally declaring nephritis? I even wondered if I’d had a mini heart attack, so intense was the painful grip.

The psyche of a lupus patient is a horrible fascination. For months now I have felt despair and entrapment at the thought of this being IT. I have always somehow freed myself from the idea that the future is bleak because I will always be ill... but this time around I seem to have less will, less reserves... 

Today is Valentine’s Day and my present is that the medical team have agreed to stop the three streams of antibiotics that were eradicating me with their toxicity. It will take time for my system to clear itself of these drugs ... but the PICC line is still in place so it is hard to believe such a time will come. It will come. Will it?

I could have waited to write an article when light and hope had replaced the nauseating struggle, but this is real too. This in the middle of the thing, this neverending ghastliness that is the nature of this life. Waiting for the energy of hope to pulse within. 


Sherry Blue Sky said...

Yes, this is real. Thank you for your dispatch from the trenches, my friend. I hope that after the antibiotics clear, you may feel some relief. Those nasty bugs have given you such a hard time this year. It must get very discouraging. I am thinking of you. Sending you a wild wave, a seabird's cry, and a loving look from a grey whale's eye. You must see a whale's eye up close, when you visit. Like nothing else on earth.

perveenart said...

You are the bravest person I know. So proud of everything you do with smiling grace and the wonderful, magical things you write.

From your biggest fan! xxx

Anonymous said...

I certainly wish you better health. I am so sorry to hear of this new problem. I hope that Spring brings you better days.

Shaista said...

I’ve never been offered the sight of a whale’s eye before - as a lure to recover!! Only you Sherry could offer such an intriguing and hopeful thing... thank you for reading me and offering me the loving support and encouragement you always do xxxx

Shaista said...

Oh Ma... only for you, always for you - who else do I need to be brave for? Xxxx

Richard said...

I am reading you.
Drinking you in.
Sip by sip.
Tear by tear.

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