I HAVE BEEN ill with Myalgic Encephalomyelitis (ME) for 20 years.

But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and my health has deteriorated.

Back in 1988 when I first became ill, I didn’t realise it would result in a long-term disability and initially, I received care from friends and lived for a month with my brother and his family in Kenmare.

Then I returned to my own home in Lismore and looked for care support. I was initially told that home help, as it was called in 1998, was for the over 65s only. A local council representative helped to get me a few hours of care per week.

After several severe relapses in which I found myself totally paralysed for short periods of time, which lead to hospitalisations, my home help hours were eventually increased to seven days a week – up to four hours a day.

This meant that I was able to live in my own home and I am immensely grateful that this intervention was presented to me by the HSE. The fact that I was in my own surroundings enabled me to rebuild my totally altered life, from scratch.

I was housebound for years, only occasionally making it outside, mainly for medical appointments.

A very challenging time, but at least I didn’t have to worry about where my food was going to come from, how I would have clean clothes, or a clean environment.

My care needs were being met.

A Daily Battle

In 2006 I met my partner, and when she came to live with me about a year later, I was proud to give up the home help support.

Unfortunately, our lives have now moved in different directions, and I find myself living alone and without a carer. As a result, I once again had to embark on asking for HSE support to help me live independently.

This has now become a daily battle.

Although my health has deteriorated over the past six years, I am quite comfortable spending a lot of time in solitude. I can entertain myself quite happily by reading, looking out the window, taking photos of the birds, marvelling at the changing seasons, coming up with creative ideas, which might or might not come into being.

I love to write and create when I can. As a founder member of ME Advocates Ireland, I am now using my writing skills to be a voice for others who are less able.

I also love being out in my garden or greenhouse and I enjoy visits and phone calls from friends and family.

Dealing with the HSE, however, brings about immeasurable stress and impacts negatively on my mental and physical well-being. 

No pathway

The HSE system of allocating care hours has changed dramatically over recent years. Previously the Public Health Nurse made a judgment about the level of care required.

Now, this is done through a central allocation system where someone in an office, who does not know me personally, makes the decisions.

One problem is that there is less funding available, but for ME sufferers the situation is particularly complex. The HSE has not yet established a clear pathway of care for people living with ME.

So despite the fact that many people with ME are housebound, or even bed-bound it is not recognised as a disability.

My current very real challenge is that I need support to meet my most basic needs, such as showering, having food prepared, having my household chores done and to occasionally leave my house, including to go to GP or hospital appointments.

In short, I need help to live.

After much struggle, I now have 45 minutes of home support on weekday mornings, and a half hour in the evening. I am deemed eligible for weekend hours but there is no funding available for this. I desperately need care seven days a week.

Recently I had to decide how to use my 45 minutes of care.

There was no prepared food in the fridge or freezer. I had no clean laundry left and I had three days of dishes piled up but I also desperately needed a shower.

I was in floods of tears (and am crying again even now as I write this) trying to figure out what was the best way to use my 45 minutes of care. I also had to find a way to get my food shopping done.

Around in a circle

I have been asking (again) since December 2017 to be assessed by HSE South Disability Services with responsibility for adults with physical and sensory disabilities.

I need this assessment to obtain a Personal Assistant, as that support would allow me to have autonomy over my care. But ME is not considered a physical disability by that office.

They suggest that my GP and the primary care team should provide for my care and to contact the Public Health Nurse to submit an application. But the Public Health Nurse fills in a very basic assessment form, which does not take into account the complexity of living with ME.

That application then goes to the Home Support Office. That office has no remit for anyone under 65 unless they are terminally ill, so they send the application to the Disability Services.

But the Disability Services does not accept ME as a disability – and so I go around in a circle. Nobody takes responsibility.

 To make this picture even more bizarre, for all the services of the HSE and other agencies, I am recognised as disabled.

I have a Primary Medical Cert and receive the Mobility Allowance, both of which are only awarded in extreme cases of physical disabilities. I am on the Physical and Sensory Disability Database.

I am on Disability Allowance and I had disability support while attending college.

I have a powered wheelchair and other mobility aids provided by the HSE.  My house is adapted with an accessible shower and a ramp at my front door.

People who see me in my wheelchair either at home or occasionally when I’m outside my house, are as bewildered as I am – that the Disability Service says that I am not disabled.

In May 2018 following a suggestion by a staff member at the Disability Services, I filled in a formal complaint with the HSE  through their Have Your Say service. 

 This has not brought a solution. It brought tears.

Vulnerable

I feel vulnerable. My illness continues to throw more challenges my way and I have not left my house independently for the past year – a scary thought.

I have spent many weekends when I am totally on my own. Including during a severe relapse, when all I could manage was to move from bed to wheelchair, to recliner, and back to bed. During severe relapses, I sometimes struggle to get to the bathroom or to get water for myself.

I have my personal alarm button on my wrist, and I am grateful for friends who are on the other end of the phone-line, but I cannot expect my friends to become my carers.

I feel it is a human right, a human need, to have autonomy over my care. My aim is not to get the HSE to admit they are neglecting my care. I don’t want to be an antagonist. I am not looking for a settlement and I don’t want to go to court.

I want to work with the HSE, I want them to examine the discrepancies which exist in the different HSE Community Health areas in the country. 

My struggle to secure care has taken a huge toll on my mental and physical well-being, now I want that struggle to result in a change of policy so that other ME sufferers and all of those with long terms illnesses which have resulted in disability, don’t have to go through the mental trauma that I have suffered.  

Corina Duyn, is a volunteer with ME Advocates Ireland