I was diagnosed with Myalgic Encephalomyelitis (ME) in 1990 & retired from my career in teaching, a Deputy Head of a high school in the UK, in 2000. Two years later I moved to Ireland to renovate a derelict house & enjoy my passion for dogs & horses.
In 2003 I deteriorated & was surprised that my then GP was dismissive of the ME diagnosis & regarded it as a mental health issue.
By 2006 I was losing the use of my arms & legs, I'd suddenly find myself sitting on the ground as my legs gave way, often with a horse above me! My arms couldn't manage any repeated use of muscles. I collapsed at an out of hours GP surgery & became paralysed for a short period. The attending GP said she'd never seen anything like this & I should go to Dublin to find the cause.
By chance I had an Out-Patient appointment the week after the collapse & was fortunate to meet with a Consultant new to the local hospital. He was willing to listen & regarded my presentation as an 'interesting challenge'.
My health continued to deteriorate & from 2011-2016 I was spending approx. 3 months annually in acute care.
The difficulties in achieving a home care package to enable me to access the very limited life I was capable of were legion.
Given the limitations of my body, I needed everything available within arms-reach of my resting place. At that time a wooden steamer chair with settee cushions on it was my bed & day chair.
I also needed a consistent temperature as overheating caused me to be unwell very quickly. If my fingers got cold it would trigger severe pain throughout my body, then my legs would give way & I would end up sitting on the floor, sometimes in an unheated room with no ability to return to a warm, comfortable space. I had to resort to pulling ‘something’ from nearby to cover me to increase my core temperature so that I could recover & crawl/push myself, back to safety.
On the days I was too unwell to move, food had to be beside me, small, easy to digest quantities, taken when I had the energy to put food to my mouth, chew, swallow & digest – you’d never believe how hard the action of eating is, something I took for granted when healthy.
At home, as stairs were beyond me & the bathroom was upstairs I had no facilities available to me. Initially I tried a camping cassette toilet, but it was too heavy to empty & needed emptying too frequently. Often it was full on a day I was struggling to use it, never mind empty it. I needed a better solution which met my needs & capability. I decided to use coal buckets as my toilets. When you live in one room & everything, including eating, is done in that room, a steaming commode is just not welcome - we all know the gut problems which accompany ME. There are some indignities I am not willing to contemplate!
The HSE ‘experts on disability’ were nowhere in sight. My request for support at home had been refused without a visit or an assessment being undertaken, no reason was given to explain why I was not worthy of an assessment. Just a refusal letter from an HSE disability manager who made a judgement without any evidence of my needs on which to base it.
So, I was on my own & had no choice but to create a system which allowed my needs to be met, within the resources available to me.
A good friend dismantled the kitchen & under my direction plumbed ‘my room’ so that I could embark on ‘one room’ living with cold running water. She moved my pantry to a space just behind the chair, but in the hallway so that when I needed food I could stand, open a door, reach a tin & eat fruit, custard, pilchards – something which required no preparation but allowed me to get the basics of nutrition inside me. The electric radiators were either side of the bed, lamps were controlled by a handheld device. The under-stairs space was ‘converted’ into my bathroom – think of Harry Potter’s under-stairs bedroom! - carpeted so that I could crawl in, with my buckets & various receptacles for wet wipes, toilet paper etc – leaving everything in secure containers ready for the times I had the energy to do the necessary ‘housework’.
The Occupational Therapist visited & was aware of the situation, but I was told the Government & its agencies had no money to help me at that time.
I was finally awarded a 7hr Care Package during an admission in November 2011. Given the earlier refusal to provide care or assess me I guess the HSE regarded it as cheaper to ‘get me out’ of an acute bed into my own home, it’s cheaper that way. I was supposed to receive 1hr a day, but this soon drifted into 7hrs across five days, leaving me alone, without care at weekends. I wasn’t asked if this was suitable for me but was told this is how it would be by the Carer. I trusted the system at this stage & did as I was told.
The HSE provided no information about what my expectations of a service should be.
Mum bought me a reclining chair just before she died in early 2012 – this became my bed, my chair – the place I lived 24/7, but utter luxury after the steamer chair.
Mum’s funeral was delayed for two weeks, giving me the time to arrange to fly to the UK & be with my siblings. My planned return flight was cancelled as I was too unwell to travel home, so returned by car & ferry which enabled me to lie down for much of the journey.
Many months later, when I mentioned to the hospital’s neurologist who was discussing my history, that I had attended my Mum’s funeral, he responded ‘so you can get out when you want to then!’ That any person could speak with so little consideration is one aspect but the dismissal of the physical & mental effort to undertake that journey & go through that time is so typical of the snapshot judgement ‘if you can do it once you can do it all the time’ too often experienced by those with ME seeking the care of a medical professional.
Anyone with an ounce of common sense knows chronic illness comes with best, bearable, poor, impossible times. That a neurologist lacked both human sensitivity & the awareness of what living with a chronic illness means astounds me to this day. I was so shocked at the crassness of his words I was unable to respond.
Unfortunately, this dismissal of the struggle to live with ME is common. It is not within the perceptive range of many Drs to understand what living with chronic illness actually means. To compound this lack of perception, Drs have no training or awareness of the complexity of ME & too often resort to simplistic online ‘how to treat’ guides rather than doing the work of learning to understand the neurological disease Myalgic Encephalomyelitis.
Too often those easy access ‘how to treat’ guides buy into the well marketed ‘it’s all in your head’ narrative & too many Drs swallow this bait - hook, line & sinker. After all it’s easier & cheaper to dismiss a ‘patient’ than it is to work with the person to find out what’s actually going on.
That these simplistic guides were created with reference to a group of people with generalised fatigue whose diagnosis was not required to include the hallmark feature of ME, that is post exertional neuroimmune exhaustion (PENE), makes their relevance questionable. That these simplistic guides make no mention of the severity & complexity of ME renders them an irrelevance & a dangerous tool if adopted by an unsuspecting Dr ignorant of the multi system, multi organ complex disease so many of us live with.
In Autumn 2012 the Care Provider pulled out of the area. The HSE used this as an opportunity to cut my Care Plan from 7hrs during the week to 5hrs. There was no assessment of need, no questions as to how I was living, no response to my stating I needed more hours not less. They also stated the HSE could not source an agency to provide staff.
The HSE & Agencies who provide Carers seem not to understand that disability is a seven day a week experience & maximising finances for a Charity or private business at the expense of those living with disability is an unprincipled act by all complicit in it.
Given that the HSE had not organised an agency to provide care, a friend stepped in to visit three times a week to cover the now five hours Care Plan at a rate of €12.16 paid to me by the HSE for this purpose. Financially it was barely worth her while but seeing my desperate need, I had been abandoned by the disability services & had no care - she felt compelled to step in where the HSE had failed me. The HSE recorded in their notes that I ‘agreed’ to this arrangement. Does a blackmail victim ‘agree’ to hand over the ransom money? I needed care & the HSE were not going to provide it, so I had to.
This ‘direct payment’ system exposed me to employing staff, & therefore being subject to employment law with all its responsibilities & pitfalls, with no insurance & no health & safety support. Compare this to the HSE paying an Agency – or Section 39 provider as they’re termed, receiving between €22 - €27 euros so that these private companies or charities can cover their costs. As these organisations pay a basic rate of anything between €10 to €14 to their ‘Carers’ the rest disappears into the costs, or profits of the business – leaving those the money is meant to reach without an adequate service.
When I tried to raise these issues in meetings they were ‘disappeared’ from the minutes and those I committed to paper to the HSE never received a response. Who was I to question a system which ‘worked’?!
My situation in the last three months of 2012 was dire. I received one call from my friend three times a week. The rest of the time I spent alone with my reclining chair/bed, my buckets, my pantry four feet away, electric radiators for heat within arms-reach of the bed, intermittent slow internet & poor mobile signal & no one from the HSE came near me to witness my plight. I was so utterly ill & there was no help, nor any will to help me.
For a civilised society this was a period of survival at the most basic level. Locked away, seeing no one & watching a friendship crumble under the strain. I know there are others worse off than I ever was, at least I had some care, but why are people in this day & age being forced to accept ‘care’ like this when so much money is passed to charities & private businesses to provide care?!
Something is very wrong & this situation needs to be addressed by Government & the HSE.
On my ‘good’ days I was able to step outside the house but could ‘fail’ & slip into paralysis within minutes if my body decided I had exceeded my very limited capability. Prior to complete paralysis setting in, whether at home or in the hospital there is a period of up to 20 minutes in which I know I’ve ‘triggered’ the process & can therefore use this time to reach the safety of my chair/bed – or try to warn someone what is about to happen. Not that my warning was heeded on so many occasions whilst in acute care, rather I was ‘patted on the head’ & told not to worry!
To date, no medical examination of me whilst paralysed has been conducted, other than the basics of ED procedure. I have asked for an EEG but that ‘wasn’t possible’ so asking for an appropriate brain scan would have been like asking someone to fly to the moon. I do not know what is happening to me physically, but the Naviaux research in 2016 makes so much sense to me & fits with my experience so well.
Fellow ME’ers keep telling me to write a book of my experiences. A story which includes tragedy, farce & human struggle in the face of a system which is outdated & with a pervasive culture where the ‘person’ at the centre of the process was ‘diminished’ on so may occasions.
Humour had to be a major part of my tale – had I not had:
- a quirky sense of humour
- an incredible will to ‘solve the problem’ based on a core personal principle of creating
- the professional skills necessary to ‘stand firm for truth’ against the HSE machine
- a determination to regain autonomy from a system which was determined to deny me that
most basic of human rights,
Without these personal qualities I doubt I would have survived.
Those last words were hard to write.
My experience of the HSE (Ireland’s health service) was that Drs & nurses had no knowledge of ME, many Consultants & ED Drs hadn't heard of it, or denied it existed or regarded it as an inability to cope, citing 'Cognitive Behaviour Therapy' as the way forward. The overriding pain & chest pain I experienced were 'all in my head'.
One Registrar wrote in my notes that I had ‘abnormal beliefs & ideas’ and that ‘she refuses psychiatric consultation frequently & got cross with any physician who suggested this’. How can one respect a health professional who has informed you that the disease you live with daily does not exist & that the associated chest pain is in your head? I referred the matter, in writing, to my Consultant who responded formally stating he had spoken with the Registrar and had:
‘… counselled him about respecting the medical literature which supports ME as an organic syndrome.
I have also counselled him that his documentation in the case notes that you were asking for ‘strange tests’ and that you had a lot of abnormal beliefs and ideas was neither correct nor appropriate.
Just in case the issue does arise again in the future either within the hospital or other circumstances I officially wish to record that I don’t support his comments or documentation in the case notes.’
It takes a great deal of energy, beyond facing the daily challenges that living with chronic illness brings, to stand against & try to educate a system which is intent on not hearing.
In 2013, after another fraught hospital admission, I wrote to the General Manager & proposed that protocols for my care were written & adopted to prevent the recurrence of the appalling treatment, the ‘abuse & neglect’ I received so often in hospital. Whilst the hospital would not admit to any wrong doing they agreed to protocols being written & followed.
During the admission, I asked for a blood test, specifically linked to ME, but the hospital could not facilitate it, despite having a pathology lab at their disposal.
I regard logistical challenges as problems to solve so despite being isolated & mostly bed ridden, (by this time my friends had moved on with their active lives) receiving 10hrs care a week, I arranged to have the bloods collected at home & sent them to the UK. Where there's a will there's a way and I had the will to find what was going on, the HSE had not.
The mitochondrial panel blood tests, (the test the disbelieving Registrar regarded as a ‘strange test’) showed I neither created energy at cellular level & that on demand, my limited energy depleted rapidly. This now made sense of the paralysis which occurred after any requirement for me to 'do' anything other than very limited, very slow movement when at my best.
This was the first objective results which showed 'something' was wrong & was the only evidence to help me prise the insistent refrain from so many in the HSE that ME was trivial, was related to being tired all the time & was the result of my personality & inability to cope.
After being discharged from hospital mid-February 2013 with an increased Care Plan of 10hrs, I was so ill, so unable to cope that in March 2013 I stopped paying my mortgage so that I could buy additional ’Carer’ hours to enable me to have the basics of care.
I left my home on four occasions that year, after the February discharge, between September & Christmas. My Carer bought food, clothes, bedding & anything else I needed which Lidl could supply, ‘shopping day’ was the highlight of my week – what would my Carer arrive with?! Shopping at Lidl together with collecting my prescriptions, Post Office business & anything else I needed had to be done within the 1hr weekly ‘shopping’ time the HSE finally allocated weekly. I had raised the lack of the ability to buy food but the HSE disability service told me to ’shop online’ – remember that intermittent internet connection?!
Then my Carer told her Manager at the agency that no fresh food had entered the house in the time she had been there – only then did the HSE provide 1 hour weekly for shopping. On so many occasions on my journey, this same pattern was repeated, I raised an issue – my voice would be ignored. If a ‘professional’ raised the same issue then action would be taken. Obviously, I did not exist.
I abdicated my finances & banking to my brother in the UK, as I had no access to a bank & an intermittent poor internet service - it was the best I could do to prevent additional financial problems arising.
My one room living was better organised in terms of storage but my ‘bathroom’ remained under the stairs. A commode was provided in 2013 but there was insufficient Carer time to keep it under control.
A bowl of water was brought to my bed for wash-time. On occasion I had a bed bath. My excellent Carers would wash my hair as I leant over a bowl on the floor, the best position for me on a good day. We laughed, we had to.
My Care Plan stated my Carers should put the electric heater on in the bathroom upstairs so the bathroom was warm enough for me to shower. This did happen. On a rare occasion I could luxuriate under running water, sitting on the floor of the shower, as the warm damp air sapped my strength. Then I would come downstairs as a baby would, on my rear, & climb onto my bed to dry. There were times I got upstairs & came down again as I had misjudged my ability & getting into the shower was beyond me.
A shower was a luxury and a huge physical effort. On balance I’m not sure if being fresh & clean was worth the physical downturn it caused.
The HSE assumed that as I could shower on occasion I could do it all the time, they made no effort to understand the effort a shower took, how unwell it could make me or that so much of the time it wasn’t possible. HSE staff battled through the snow last winter to walk to work in the snow, these efforts were rightly recognised & praised. In the working world if that same effort was expected every day it would be regarded as an unreasonable expectation yet, in the world of disability, ‘you can do it once, you can do it all the time’ is the pervasive, unrealistic & dismissive culture.
It was a dismal, demeaning & degrading existence – my dignity had been stolen & those in the HSE who could have addressed the situation chose not to hear or act.
I felt lost. No principle by which I lived my life could be recognised in the way I was treated by the HSE. I was being emotionally & physically ‘beaten’ by a Public Service with a duty of care towards me - I had no personal or professional experience which resonated with the manner in which this service was delivered.
But a Phoenix does rise from the ashes & if the HSE could not provide a way forward then I had to.
I ‘required’ a Multi-Disciplinary Meeting which finally took place in December 2013. I provided A4 Planning Sheets, tabulating the background, identifying my needs & asking who was responsible for each area of need. My hope was to open discussion, to find a way forward.
The HSE refused to engage collaboratively. The planning sheets were ignored. I suggested mediation as a possibility & acknowledged a more senior manager would have to give permission. Despite subsequent reminders over the next two years there was never a response to my suggestion/request. Yet mediation is identified as an appropriate step within the HSE’s complaint process.
In 2014 a muscle biopsy & a chemical stress test showed I had severe type II muscle atrophy & small vessel heart disease.
A chemical stress test is an alternative to a standard treadmill stress test, 60 secs of which triggered paralysis in me so was an inappropriate test to use in my presentation. It involves MRI comparisons between the heart at rest and after being injected with adenosine.
Cardiac issues are a common comorbidity with ME & the inability to undertake exercise subsequently affects the muscles, a downward spiral.
‘This low tolerance for physical activity is typified by an abnormally early transition to anaerobic metabolism. In ME the aerobic energy system does not function normally.
Physical exertion elicits a response so distinctive that many researchers, (NIH, Cornell’s Collaborative Research Centre) .. use exercise, not as a therapy, but as a way to aggravate the illness so that it can be studied.’
Workwell Foundation Opposition to Graded Exercise Therapy (GET) for ME May 1, 2018
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