[This is a long article but well worth reading. I'm posting some of it here; to read the rest, click on the link.]
In this post MEAI Advocate Christine Fenton describes her journey with ME and the HSE, elements of which we'll all recognise. The Result? Recommendations for actions by the HSE.
I was diagnosed with Myalgic Encephalomyelitis (ME) in 1990 and 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 and enjoy my passion for dogs and horses.
In 2003 I deteriorated and was surprised that my then GP was dismissive of the ME diagnosis and regarded it as a mental health issue.
By 2006 I was losing the use of my arms and 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 and became paralysed for a short period. The attending GP said she'd never seen anything like this and I should go to Dublin to find the cause.
By chance I had an Out-Patient appointment the week after the collapse and was fortunate to meet with a Consultant new to the local hospital. He was willing to listen and regarded my presentation as an 'interesting challenge'.
My health continued to deteriorate and 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 and 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 and 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 and 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 and 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 and 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 and 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 and capability. I decided to use coal buckets as my toilets. When you live in one room and 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 and had no choice but to create a system which allowed my needs to be met, within the resources available to me.
To continue reading the article, click on –