Category: My Personal Story

Very Severe ME And The Intermittent Ability To Speak

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Credit: Sarah Richardson

Someone living with ME used the analogy that they have a battery which
charges to 30 – 40%.

I have a battery which charges to 0.5 – 3%.
If that was the case with your mobile phone and you took it outside with you,
you could, for example, speak to your Mum quite clearly and intelligibly for
several minutes, when the battery would suddenly cut out…

You would then return home and be unable to communicate whilst the battery recharged. If it was your smartphone, absolutely all other applications and functions would also be impossible.

Unfortunately, no matter how long you wait for your faulty battery to recharge it will only ever reach 0.5 – 3% So it is with the fluctuating and variable condition of very Severe Myalgic Encephalomyelitis and hence the intermittent ability to be active and to communicate verbally.

Sometimes I can speak well and very competently for a few minutes, then my
energy is depleted and I’m unable to speak at all, often unable to move nor to
carry out any activity whatsoever.

Meanwhile your poor mother (in her 9th decade) doesn’t hear from her
daughter for months on end. Nor is she able to visit her. And so it is with all
relationships formerly enjoyed. The ‘conversation’ will never be completed.

Although imposed by the condition of Severe ME, talking slowly, quietly or in
any other way modifying your communication does nothing to help with the
insurmountable problem of the battery failing after several minutes.

Of note, and of great significance, is the fact that the most basic and
essential activities of living : control of heart-rate, respiration, ingestion,
digestion, elimination, thermoregulation, and maintenance of homeostasis
take a minimum of 40% battery charge.

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Anita’s very first action of M.E advocacy

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1987

In July 1987, after living with a baffling, painful and increasingly distressing welter of symptoms for 8 years, I am finally able to receive a diagnosis of Myalgic Encephalomyelitis (also called Post Viral Fatigue Syndrome at that time) from the eminent researcher, of 40 years clinical experience, Dr John Richardson (Ryton, England UK)

I carry on working in my vocation of primary school teacher with my class of over thirty 4–5 year-old children, for just 5 weeks of the autumn term, at which point I find I can no longer stand upright.

I apply to take a ‘half ‘ post, hoping to recover by working fewer hours, but I am advised by the Chief Inspector of Primary Schools to take a complete leave of absence, to be reviewed after 12 months.

My health continues to rapidly deteriorate.
I am 97% couch- and bed-confined and it is quite clear that I can’t work. In March of 1988, my salary is reduced to half-pay,

July 1988

Pauline Stewart, owner of a hairdressing salon, and the director Royston Mayo, organise Tyne Tees Television News to interview four professionals about living with ME and I am invited to participate.

We are interviewed by the reporter, Kathryn Holloway, and discuss how we are not work shy and only wish to continue to pursue our various careers, including bereavement counsellor, hairdresser and, myself, teacher.

This is quite a groundbreaking piece of journalism as, due to the stigma that Myalgic Encephalomyelitis is a ‘Yuppie’ disease, or merely hypochondria or laziness, many, or even most, people affected, remain anonymous.

At one point in the interview I say: “ME has had most of my twenties, I don’t want it to have my thirties too.”

I am asked if will provide a follow-up interview about one individual’s experiences of M.E and the next day Kathryn, the camera and sound crew come to my home.

I am suffering PENE (Post Exertional Neuroimmune Exhaustion)
so the interview takes place in my bedroom, reflecting the payback experienced after the previous day’s efforts.
I cannot sit up in my bed whilst the crew are setting up their equipment, so I am interviewed lying completely flat, wearing dark glasses due to light sensitivity and elbow protectors to try to alleviate pressure-care problems on my very thin arms.

October 1988

On October 5th, after examination by the Department of Education’s medical officer, I am retired from my career of teaching, on health grounds, at the age of 31 years.

October 4th 2018

Tomorrow will be the 30th anniversary of my premature retirement from the sphere of education.

My Protest Against 39 Years Of ‘Gaslighting’

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Due to the unremitting gaslighting which I experience from social-care providers, health-care providers, disability benefits assessors, care-package providers and even 3 ME organisations which should be closer to the heart of very Severe ME needs, I am, with sadness, changing my Facebook cover photo by way of protest.

I have endured 39 years of ‘gaslighting’ (look it up/ see below) and now, aged 61 years, I demand my right to some life beyond :
>>eat, toilet, deal with overwhelming burden of bureaucratic harassment, sleep. Repeat<<

From today, I will be using this quotation to head every correspondence with said agencies.
They may continue to refuse to hear it. I shall continue to say:

“I am here. This is the reality of my lived-life.”

– until my last breath.

Myalgic Encephalomyelitis is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969…

Result

My first use of this letterhead, in an email and follow-up hardcopy letter, has resulted in a respectful, appropriate and prompt response from the service to which I wrote.

Definition of Gaslighting

“Gaslighting is a tactic in which a person or entity, in order to gain more power, makes a victim question their reality. It works much better than you may think. Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators,narcissists, and cult leaders.

“Gaslighting is a malicious and hidden form of mental and emotional abuse, designed to plant seeds of self-doubt and alter your perception of reality. Like all abuse, it’s based on the need for power, control, or concealment.”
(Psychology Today)

#WeeksMissing #ME #SevereME #PWME #canyouseeMEnow

24th Anniversary Memories

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(A gentle warning in case this may trigger PTSD in some people)

At 8.30am on November 20th 1993, 14 years into Severe ME & Multiple Chemical Sensitivity and 97% bedbound, I woke to find my bedroom filled with very strong paint fumes, the vaporised lead from the paint stripping and gas fumes (possibly carbon monoxide) from the heated paint stripper.
The workmen trespassing in my garden, in order to paint the upper flat, refused to stop working until I could escape the building.

Shortly after this, although rescued by friends who came and collected me, I was flat on my back in their entryway, unable to climb the stairs to their apartment even when supported under the arms on either side. I was taken to hospital by the kindliest and most solicitous paramedics and there told that paint fumes at these dilutions “couldn’t possibly affect me this severely.”

What followed was a massive adrenaline response which lasted for over 2 years.
There was pandemonium in my brain. It felt like a tiger was going to come through the window at every moment, like I was running through a burning building screaming and looking for my children.

The effect on my brain chemistry was intolerable.
I couldn’t stand any activity for more than 3-4 minutes.
I had to alternate between listening to the radio, lying in silence and looking at a distant television screen without the volume. My brain felt like it was completely demented, on fire, but I, Anita, was calm.

The handwritten letter below is what I wrote in the dead of night, with my left hand, on the hospital ward. I couldn’t use any other part of my body at all.

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I’ve been unable to sit up, or hold up my head unsupported ever since.

That was when my life ended.
I’m not sure what to call it now…
I’m not at all depressed, you understand, it’s just a fact.

“It’s life Jim, but not as we know it.”

Severe M.E Understanding And Remembrance Day, 2017

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I’m starting to write this at 4 o’clock in the morning. I have sleep reversal, and today, August 8th, is Severe M.E Understanding and Remembrance Day, 2017.

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This first photograph is not my story, but it’s a good enough start.
2 nights ago, seeking support, I posted in a Facebook group, under the heading: “Injured”, that I had damaged my ribs, asking if anyone would be awake late, very late.
People were lovely and kind, some offering a number of solutions.

What the responses made me realise, however, is that I hadn’t done a very good job of explaining the severity of my condition generally. In fact, in crisis due to the injury, I hadn’t been able to explain anything at all.

When I joined the group, I never introduced myself and didn’t explain that I have a profoundly severe case of M.E. So, it feels a little bit like it might if one was gay and not ‘out’. Everybody’s assuming how I identify and offering solutions based on that mindset.

So, in honour of inclusivity and Severe M.E Understanding and Remembrance Day, I’m coming out, but just a little to save on your patience:

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I haven’t left my home, bedroom or bed, since 1993, apart from an imposed house move, by ambulance and stretcher in 2003.

For 25 years I’ve been 100% bedbound and “bodybound” – barely able to move in the bed and only occupying two positions, either lying on my left side, or propped by pillows, reclining for just long enough to eat.

At a very early point it was threatened that I would be removed from the practice list if I requested a home visit.

The GPs refused to visit for 23 years “unless there was a medical need” . That is, they would come out to assess e.g a chest infection but there would be no management of my condition of severe and profound M.E.

I’ve recently actually been visited by a new GP, after the old ones retired (but only because of another acute injury) who has offered to visit me once a year – Big Deal!
I only gained access to the Internet in the spring of 2016 and find that most of the M.E groups on Facebook are solutions-orientated.

After the cumulative effects of 38 years I’m physically fragile, and exhausted beyond belief, and cannot even tolerate someone else helping. No interventions are possible.

I’m intolerant to all medication and frequently experience an inverse or idiosyncratic reaction. I’m barely able to move and can’t soak in the tub, visit a chiropractor or even apply creams designed to relieve the pain and inflammation.

Due to the severity and chronicity of my M.E I wasn’t/am not able to take any action whatsoever to alleviate or treat the extreme and acute pain caused by the injury.

The reason that I’m writing this is that, I’m sincerely glad for those who are able to follow protocols and improve their quality of life, but we need to be aware that this is not the case for everyone in these groups.

There are those of us still out here for whom nothing has changed, because nothing is able to be changed.

We are invisible, ignored and sidelined and for the sake of inclusivity I’m hoping to make people living with very Severe M.E a little less invisible, once again, today.