Ignorance isn't bliss - it's toxic!

Here we go again.

Sorry this blogpost may not be very thorough, spellchecked or rational.

Just seen this in today's online Daily Express in Dr Rosemary Leonard's column "Getting to the Heart of Medical Matters":

Q After a flu vaccination my 45-year-old son began suffering muscle weakness, fatigue and lethargy. Numerous blood tests and visits to his GP followed and he was told he was suffering symptoms of ME but no help was offered.

Can you guess the content and suggestions?
Of course you can. No peeking.

1) the flu vaccine it is unlikely the jab is to blame as it does not contain any live viruses.
2) cognitive behaviour therapy (CBT), counselling and physiotherapy can be helpful along with painkillers for muscle pains and also antidepressants which can help boost mood.
3) One of the most beneficial treatments is graded exercise where the patient has a specific programme to slowly increase the amount of activity they do each day.
4) Reducing stress
5) a healthy diet
6) reducing alcohol

I'm not denying there will be nuggets of help there in among the old misguided anti-fatigue measures. But the lumping all diagnosed M.E./CFS cases under the same hallucinatory umbrella is getting us nowhere nearer to awareness of the severity of the disease in many cases. Nowhere nearer to a diagnostic test. Nowhere nearer to effective treatment. Nowhere nearer to a cure for any of the neuroimmune illnesses that fall under the influence of NICE's idea of M.E./CFS.

My own M.E. (yes, that's anecdotal, I know, I know!) symptoms, even before diagnosis and while still able, intermittently, to work, were ALWAYS worse after the annual flu jab (as a T1 Diabetic in the "at risk" group) and I always got a panoply of bad (non-flu?) viral infections both before and after the jab. It was the week following my jab in 2005 that I collapsed and became bedridden and housebound for the best part of a year and from which though improved, I have never fully recovered.

My GP sent me for 2) CBT and 3) GET. At an NHS "CFS/ME Clinic". So patient "fully compliant".

Even the OT admitted by the end of 6 months or so, that it wasn't helping me to be cured or really improved. Why? Because it was clear to her from the off that I wasn't depressed. Wasn't "frightened of doing too much". Wasn't "deconditioned". Didn't harbour those "false illness beliefs" so beloved by those who think the root causes of M.E. include psychological difficulties.

I couldn't even make the excruciating journey to the last GET feedback session because it was making me more ill. The OT could see I was motivated to return to work and my happy, successful, joyous fully functioning previous life. I had to be all but forced to take early retirement, for goodness sake. On what planet is that a "lifestyle choice"???

I had low dose amitriptyline (antidepressant) to help with relaxing painful muscles alongside painkillers like aspirin, ibuprofen and paracetamol. They did nothing for me but make staying awake even harder, weight gain, fuzzy headedness, etc even worse. So in the end they were discontinued. After all, my mood had never been low.

My mood had never been low, that is, until rationally I worked out the state of play with M.E.  No, I, like so many others, did not choose this diagnosis and knew nobody with it until much later on! Then, seeing my career, my freedom, my credibility as a fully-functioning citizen, my very truthfulness questioned by society as a whole, my mood did dip at times, understandably, till I understood I wasn't alone with this variable but very characteristic set of suffering symptoms (of which "fatigue" is quite low down the list, thank you!!!)

I had been eating healthily for many years, most of my adult life, as an insulin-dependent diabetic. That's a "tick" for number 5.

Number 6? Well, after collapsing with M.E, one glass of wine had me so dizzy, sick and disoriented, my central nervous system obviously knew what it didn't tolerate any more without me voluntarily reducing intake. I could tolerate the occasional glass of wine, or lager, even once or twice a spirit like brandy or vodka at Christmas before M.E. raised its much maligned head. So 6) reducing alcohol is hardly an issue to aid recovery for some of us either.

4) Reduce stress? Don't make me laugh (I've actually been known throughout my life, and every illness and circumstance as having the best positive attitude and a wacky warm GSOH)

 
Tell 4) to doctors, nurses, specialists, consultants, the DWP, ATOS, utility companies, landlords, and every last well meaning delusional who will thrust this article in my face to "help me cope".

I'm coping as I always have and always will. Was my diabetes down to "illness beliefs"? Was my shingles down to "illness beliefs"? Was my recently discovered tachycardia, ectopic beats & cardiac arrhythmia due to my "illness beliefs"? Was my bout of giardia in Bolivia, which may or may not have triggered my immune system's meltdown, my "illness belief"? Is the space in the teeth of my lower jaw (where I now know my great grandfather had an extra tooth) down to my defective "illness beliefs"? So what's the likelihood I've suddenly developed something that has no possible physical cause?

I'm coping. Pacing. Enduring. Hoping. Thankful. Optimistic.

But when are you going to actually treat my cardiovascular, immune, autonomic, cognitive disease? When are you actually going to prove you're listening to 250,000 people in this country and so many more worldwide? When will children and young people with M.E. stop dying from something you say  has no Proper Robust Reason?

When will you cure me, or just fess up, shrug at me with a look of condescending pity and hand over the cyanide pill? (N.B. Jokey sarcasm alert - you can go on dismissing my M.E., but you will NEVER change who I am inside!) :)

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.

Emotional lability: watering our personal happiness flowers!

Sorry I've not been up to much blogging much yet this month!

Easter came and went in a semi-horizontal haze of pain. Brain fog swamped me, nausea, sweats and shivers, aching legs, sore chest, ringing ears, emotional hours when all I could do was sob over the fate of the Titanic 100 years ago! I'm not often down, but last week, everything I read, combined with how hopelessly ill I was feeling, seemed to drag me under.

Nothing made sense. Nothing seemed nourishingly joyful. Niggles on message boards and comments on statuses seemed negative and nitpicking. I found my normally buoyant mood deflated each time I came to the laptop. Sometimes I was too sick even to read, much less respond.

 I'm known as a peacemaker and natural mediator. Suddenly I felt like I was in danger of drowning in other people's conflicts, as if I couldn't keep one foot on the bank to help pull them back from the flood without ending up sliding under the current of grief and rage myself.

 So much negativity! People fighting over and over the same few inches of ground we've been stuck on for decades with the sickening politics of M.E. People misunderstanding other people's motives when both were surely on the same side. I guess most of us feel those suffocating, helpless, tail-spinny feelings every so often.

With M.E. we put so much of our hope these days in "breakthroughs" and "research". Yet all the evidence seems to spell out that when breakthroughs come, as they do, when research shows the disease is physical, the powers that be simply won't let it get us anywhere. Heads appear over the parapet of M.E. research and awareness, only to be shot down again. Petitions and campaigns are built on people's honest, hard-won "spoons" only to be rejected by the government. They CAN hear. They DO hear. They just don't want to change. It doesn't pay. It doesn't suit.

Sometimes, even within the very supportive M.E. community spread across many social networks, groups and gatherings, we see different strong-minded, opinionated characters tearing one another apart online, forgetting we're all fighting the same, or similar battles. We don't have the time left, some of us, for the luxury of in-fighting. It fritters away what little strength we have. It wastes our focus and energy. We have precious little energy even at our best. We CAN do it together. But we are on a hiding to nothing if we pull ourselves apart!

Conflict, for me personally, leeches and sucks away everything that keeps me going. When I was so sick this last week or so, I just had to peel my eyes away or be submerged in despair. If I despair, I'm no use to any of my friends online and elsewhere who depend on me to stay positive, compassionate and empathetic so we can all move forward together and maybe make a difference for those who like us, are caught up in this illness, willy-nilly. (That's like the hokey-cokey but with the fun taken out!)

I'm usually known for being resilient and hopeful. Last week these gifts almost deserted me, as the overwhelming "emotional lability" of M.E. (as in other neurological conditions) pinned me mercilessly to the mat and drained my personal inner Pollyanna of her lifeblood.

So I drew back for a little, or my struggling sick body drew me away from it all for a while to try and recover my usual sunny equilibrium.

Sometimes we all need to make sure we're watering the roots of our own happiness flower! Doing what puts the smile back in our hearts when we're feeling down or crushed and ridden by our emotions. Maybe chopping down the weeds a bit. Maybe cutting down on spending time staying with situations that are drains not fountains for our spirit. Not focusing energy on people who bring us down. Not wading daily through dialogues that have no intention of going anywhere joyful, or thankful or gracious and humorous but rather seem to prefer to dwell on blame and shame. Life and spoons are too short. Mine certainly are, as I learnt again in this latest M.E. crash.

I'm still not up to much blogging.
Sense may still cease to be made at times!
I may still blubber unashamedly over the Titanic.
I may still feel steamrollered by people's personal battleplans.
But I can still laugh and let the love flood in.
I can still count my blessings.
We all can.

First, here's a brand new video I saw today that's  really worth a watch and a share: complied by friend and fellow sufferer Giles Meehan : This is M.E. (Myalgic Encephalomyelitis) - 34 people with M.E. tell it like it is!

Plus ten personal things that make me glad I'm alive that have made me smile these last few weeks:

1. A friend's little boy making himself (and us!) laugh with his made-up (no, not obvious at all!) knock-knock jokes and spotting a Great Spotted Woodpecker through my telescope before any of us adults (Knock -knock! Who's there? Interrupted Sheep. Interrupted Sh... Baaaaaaaaaaaaaaaaaaah!)

2. A bunch of tulips and daffodils given to me by a visiting friend that turned into a smorgasbord of extra textures and colours when some of the expected golden trumpets turned out to be cream and lemon swirls of jonquil and narcissus too!

3. A Song Thrush visiting my patio day after day, eyeing up nearby bushes as a venue for his  nest ready to bless us with sprinkles of echoed melodies and speckled young

4. The weather cocking a snook at the weatherman who swore it would be rain, on a day when only sweet sunshine and flossy cathedrals of white cloud were on the agenda in reality

5. An electric heat mat given by a friend some years ago now, glowing its comforting warmth into the agonising crook of my back and aching gluteals as I lay in bed, unable to bear the light through the bedroom windows

6. The lovely Easter messages and greetings, emails, posts and tweets from friends to brighten and bless my days, even though my plans to go to some Easter services went awry this year through illness and exhaustion. God is good! He mystifies me daily with his grace to me!

7. Yorkshire Water sending me a cheque in compensation for low water pressure last month, and the dread as I opened my winter quarter gas and electric bills evaporating into hilarity when I found both were so much smaller than I'd estimated!

8. The Wren, that we hardly ever see, but daily hear singing with a loud trill that punches way above his tiny body weight, hopping just inches away from me through the glass of the back door.

9. Discovering quite by chance on a free podcast download, "The Occupant of the Room" by Algernon Blackwood, a short story I heard on Radio 4 when I was in my 20s, which I've been trying to trace for 30 years, not being able to recall author or title. Spinechilling!

10. My diabetologist, after 30 years of unannounced hypos, Dawn Phenomenon, Somogyi's Effect and all the needles, whistles and bells of Type 1 Diabetes, finally saying those immortal, rare words: "Would you like to try an insulin pump?" when only around 3% of insulin dependent diabetics have one in the UK.

I'll stop there, cos I did say ten things, not dozens! Cos my wrists ache like crazy by now.

Oh yes. I have such a lot to be grateful for. Nothing is going to rob me of my joy.

Please make quite sure that nothing and nobody sidles by to rob you of yours, either!