Tuesday, 17 April 2012

Without A Proper Robust Reason

For a long time now, I've been planning to baptise the young granddaughter of some dear friends. So often, as a minister, I've had the joy of christening babes in arms, who their parents bring so we can celebrate the love that surrounds them in the presence of their wider church family, giving thanks for the gift of new life.

Only on a couple of occasions have the children themselves asked for the baptism.

This was the case with Tilly. Now 8 years old, she had been looking forward to being baptised at the church where she has been coming to Rainbow Club (Junior Church or Sunday School) all her life with her grandparents, supported by her mother and family members. She and the family wanted me to perform the service where her baptism took place. For one reason or another, not least my illness through M.E., this has taken more than a year to co-ordinate.

Finally this Sunday, the sunny Sunday after Easter, dawned and Tilly, in her beautiful christening gown like a happy and blessed princess, came to church (the church where I was baptised myself) with her loved ones to be baptised and celebrate God's inclusive, playful, tender love and the rainbow of unique gifts he gives to each one of us.

I had rested up all week to try and be at my best for the demands of the weekend, the service in particular. I had travelled the day before, ten miles from where I live to my Mum's village where my home chapel is, so I could try to rest and recover from the harrowing ordeal of two bus journeys.

Friends and stewards at church kindly and considerately did all they could to help. A lift to church. Notices read. Baptism candles and water for the font arranged. All things made as easy as possible so I could concentrate on taking the service at the heart of which the baptism was a jewel of joy.

Before we started, Tilly's lovely family asked me and my Mum if we'd join them for the celebration party afterwards, over lunchtime. I was delighted, and determined to be "normal" for that time. From setting off with my lift to church at ten, to the lift home from the little christening house party at 4.30pm was a mere 6 and a half hours.

The whole day couldn't have gone better. People who didn't even come to church very often, and those who did, said how much the worship had touched them and included them in different ways and Tilly had the baptism she had dreamed of for a long time. So far, so very, very good.

My voice was rusty and failing a little by home time, but that always happens, since M.E. first struck.

I lay and slept back at my Mum's most of the evening. We watched the commemoration programmes about the sinking of the Titanic exactly 100 years before.

That night I slept, fitfully, but I slept. A contented sleep. A satisfied sleep. Better to do what you're called to do, taste joy and contribute to the world turning and catch up later with rest, than never really to live at all. That's always my motto.

Monday dawned. Mum was to come back to my home with me and then return to hers later in the day.

Half way back on the fifty minute bus journey, I was getting really ill. My heart kept feeling fluttery and as if it was stopping. I felt terribly sick, unsteady and nauseous. That's roughly the gap I often get between exertion and post-exertional neurological and autonomic symptoms or "payback".

My head was thumping, my ears ringing. I felt spaced out and terribly ill. My limbs ached so much I couldn't find any way to hold or place them to make it better. My chest muscles and shoulders hurt so much. I had to close my eyes to block out the light. The motion of the bus over the roads of our valleys and hills felt like the Titanic's deck tilting and rearing for the final plunge under a heaving ocean.

I didn't want to worry my mum, but when I staggered off the bus, there was no disguising my ashen face, and I suggested I had to sit for a while. I'm not one to dwell on such things, but I did work out the quickest route to the NHS Walk-in Centre from the bus station in case I had to make the trip!

The ground would not stay still. I was lurching from feverishly, burning hot to icy cold. My fingers were stiff and felt swollen though cold as stone. I had travelled back with my stick collapsed in a carrier bag to minimise my luggage. Now I got it out. I could not balance at all.

I tested my blood sugar, praying it would be low so that would explain why I felt this way, why my heart was thumping and jerking in my chest. But my BG was 9. Nowhere near low or even dangerously high. This was not diabetes related. So there was nothing I could do.

After an hour slumped against my mother on seats in the interchange, I felt just about well enough to move on and get home on the next bus (a fifteen minute journey). Even this was almost too much, but I got home at last.

One last random craziness happened when I found there were road works outside my house and the workmen had dug a deep trench along the pavement leaving no way for me to get across it into my house. Seeing us there, the young workman apologised, cleared the earth away as quickly as he could and then lay down in the trench like a modern day Yorkshire Sir Walter Raleigh for me to step across. Laughter always makes the most traumatic moments bearable, even joyful!

I haven't got right yet. My muscles are like lead, but so painful. My head feels as if my brain is a size too big or my skull a size too small from the one that fits. I can't keep warm. My blood sugar refuses to come down into single figures, whatever I inject or eat, since I've returned. Never tell me diabetic control is an exact science. I've had Type 1 diabetes for 30 years and know for a fact it isn't.

I have slept unrefreshing sleep at night and my body's screamed for sleep in the day though my thoughts are whirling, though brain fog rules. My muscles are shaky, have been ever since the bus ride. My mum could apparently see my hands shaking when I was holding cuppas. My glands are enlarged and my eyes keep blurring and running.

Thank goodness I don't have to repeat even an hour's effort reliably and regularly at the moment. Whatever the powers that be may want to think, or cynics assure themselves, for those of us with fluctuating diseases affecting the central nervous system, the cardiovascular, autonomic and immune systems and so much more, life is never predictable, pace-able or reliable.

But this weekend, for 6 1/2 hours I lived life and gave my all, and was blessed and I could not,would not, change one moment!

Then today I read this online:

 Letchworth 20-year-old’s sudden death caused by dysfunctional immune system

In the 21st century, how long will M.E. and related illnesses, cause doctors, pathologists, coroners to say things like this?

There is a history of being unwell for some time without a proper robust reason,” as a pathologist did about Tara Morgan, who died at 20 last September from: " respiratory and cardiac arrest due to autonomic neuropathy.”

A "proper robust reason"?

How robust a reason does M.E. have to be before it's taken seriously, for pity's sake?

The pathologist alludes to CFS (M.E.) as being most probably involved in Tara's cause of death:

"He added that Tara’s death could be related to chronic fatigue syndrome, a disorder defined by persistent fatigue." M.E., of course, is NOT "defined by persistent fatigue," but by a many of the symptoms and final causes of lung, heart and immune system failure from which Tara suffered, and ultimately died.

Tara Morgan of Letchworth, UK

Yet with all these facts, there is still an implication of mystery and helplessness:

It has affected the immune system but that had been dysfunctional for quite some time. I’m at a loss other than this possibility to explain what happened to your daughter.

But in the way M.E. erodes the body's ability to cope with recurrent viral infections etc, we hear:

This is a case of something in the body going wrong over quite some time."

We hear: "Tara, who was born with a learning disability, had a history of headaches, muscle aches, joint pains and a bloating of the abdomen."

A long "history" that sounds so much like M.E. (or CFS, if you insist) that the experts here themselves name it as a likely culprit without putting its cumbersome name on the certificate this time.

The cases of young people dying from the complications of immune system dysfunction, illnesses like M.E. that medical authorities shrink from naming freely and openly seem to be getting more frequent in the press these last months and over the last few years. But always apologetically. Always with some proviso or get-out clause, it seems. Then the urgency for answers dissipates. Until the next tragic loss.

We need biomedical research and we need it YESTERDAY!

So glad to know all our combined efforts for Let's Do It For M.E./Invest in M.E. have currently raised £36,099 towards the £100,000 total for the biomedical research and treatment centre in Norwich.
Together we can, and MUST do it for M.E.

For Tara, Sophia, Lynn, Victoria, Lois in recent days and countless other unpublicised deaths from the complications of M.E. For all of them, and for the children of our future, we can never give up living hope within us and our communities.

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