I was sleeping up to 18 to 20 hours a day... says Cork woman with M.E.

MY story, in its own way, started when I was a teenager, not long after my 16th birthday, in the winter of 1994-1995.

I had suspected undiagnosed glandular fever and didn’t recover. I spent the next 18 months picking up every virus passing through, and sleeping my life away, with very little energy.

Lucky for me, my parents had heard of Myalgic Encephalomyelitis (M.E.) and knew rest was the only required treatment available, as my then GP told my parents that all I was looking for was some extra love and attention, and at another stage was just attention-seeking — all while sleeping between 18-20 hours a day.

At this stage, I had not been at school very much since February — in for two to three days, then out for two weeks, etc.

One of my sisters always tells me her early teen memories of me were of me always falling asleep, and never having a normal social life. To me, it was just too much energy to think about, it was only in my 20s I realised how much I missed out, and how little of a life I had.

In April, 1996, a locum GP at a different practice diagnosed me, I was with my mom, and cried bitter tears, my mother then explained to the GP what I had been through for the last 14 months. To me, I finally had someone who believed. At that stage, my parents knew how controversial the diagnosis was and the belief at the time was I should make a good recovery within five years.

Somehow or another I did complete my schooling. College was insightful as I reflect, begrudgingly up at 7.30am to get a bus in and home by 5pm, nap during 6pm news and asleep by 9.30pm. I also slept most of my weekend but with study done Saturday only until after Easter, when assessments were due. Then all weekends were study but weekdays were still just college, home and sleep.

Amazingly, to the outside world, all was normal, as they didn’t know how much I slept behind closed doors.

It was Easter, 1998, before I was more able to regulate my energy, and I began to socialise a bit more. But I always had two to three hour naps before going out and then would rest the following day.

By summer ’99, I was working full-time but slept for my breaks, and on days off I would have rested more than the average person. But to me, I had my life back, it was onwards and upwards with life, I knew no different.

The next eight years were, to me, ‘normal living’. I went back to college in the UK, completed my nursing, returned home to Ireland, worked in Dublin until I finally got back to Cork, where I worked and bought my own apartment in 2006 (mid-Celtic Tiger).

I had a newish car and enjoyed my summer sun holiday with regular trips back and forth to friends to UK. I still always needed a nap during the day, especially if I was going out that night, always conscious that my sleep was slightly more valuable than with other people, but it was life and very, very liveable.

Then, on June bank holiday 2008 (a date I will continue to remember for years to come), I had a virial migraine all weekend. At work on the Monday morning I collapsed, and once again my life was turned around. In the space of 10 days I had a total body meltdown — increased heart rate, very low blood pressure, unbalanced gait, heart palpitations and arrhythmias and indescribable exhaustion at everything I did. I was bedbound for two months.

In disbelief and stubbornness, I went back to work in October part-time, for a few weeks, but didn’t manage any week without a sick day before collapsing again — this time it took two years before I was out of bed.

My main symptoms were absolutely debilitating fatigue with associated post-exertional malaise (PEM) even with small amounts of used energy, brain fog (memory problem and unable to concentrate and at times disorientation) with severe sensory overload (hypersensitivity to light, noises and smell), increased heart rate and palpitations, muscle twitching from muscle fatigue, irritable bowel (with later years weight gain — but originally severe weight loss as I was unable to feed myself enough) and endometriosis.

I am one of the lucky people with this disease as I was diagnosis early by a family GP originally in Kerry and now I have a very good support GP practice here in Cork. I have always had excellent family support from parents and my sisters and most especially my niece.

Although I had some very low days, in October, 2015, as the enormity of the effect of this disease and my life restrictions hit me, my family are with me in one way or another 24/7.

At home — the house work is always taken care of, something even on my best days I can’t manage without payback — silly things like showering and washing my hair can be a struggle on a not-so-good day. Shopping and cooking are done for me, when I am not able,

I get a taxi to doctors’ appointment, or family keep me company when I get frustrated with my disabilities or lack of managing energy.

The hardest thing, I have experienced is getting HSE/hospital support or reacknowledgement — consultants, physio with knowledge, A&E visits are a horror, and financial support — social welfare and medical card are my only entitlements.

In Ireland, ME is seen by some as functional neurology disorder and as such, a neurologist will say they can only diagnosis FND, as there is no test for ME, and will then send a referral to be treated by psychiatry with CBT (cognitive behaviour therapy) with little more support unless you have other treatable medical conditions.

I have over the years tried many types of alternative therapies, but in order to get relief from them, they need to be attended regularly and can be expensive when unable to work.

Most of us also take extra food supplement to correct insufficiencies in our diets, as well as health diets with food intolerances, which are also an increased financial output than the average person.

I have over the last 10 years on a few occasional attempted to go back to work part time but it’s always a struggle and I spend the rest of my time trying to build up any spare energy for the next working shift (my family did everything else for me, including taxi in and out of work, but I still never managed to stay long without relapsing). It could be anything from a family funeral to traumatic dental extraction to having gall stone removal surgery, all require 18 months plus to recover.

The biggest part of treatment is pacing energy and managing exposure to stimuli. To the outside world, I’m only seen on a good day, which is difficult for others to understand and explain about.

For me, it means living a controlled existence, no group outing, no social gatherings, as noises/movement/fluctuating environmental lighting appears to overload my brain’s ability to process any information, causing me to literally fall asleep with inability to function. And when I do prepare myself mentally for activity there is always pay-back (PEM — post ex post-exertional malaise), be it a longer nap than usual to regain energy, to days in bed with exhaustion and brain fog.

Everything is a game of give and take, where I always appear to be on the losing end.

As a single person, with no partner or children of my own, I keep wanting to return to work to justify my existence, I think it is just so hard not being able to live and make things work financially, and after all that still not be able to live a life.

Twelve years of severe to moderate ME and I still feel I have to fight for understanding and get an acknowledged medical diagnosis and treatment plan by doctor in hospitals here in Ireland.

Thanks for listening to my story.

What is Myalgic Encephalomyelitis (M.E.)

Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 10,000-19,000 people in Ireland, and around 17 million people worldwide.

People with M.E. experience debilitating fatigue, pain, brain fog and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

Not everyone will experience the same symptoms so it’s important not to compare someone who has M.E. to another person who has the illness.

People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may recover, others can remain ill for a number of years and may not get better.

Some people find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives. This is similar to many other chronic illnesses.

Degrees of severity

The National Institute for Health and Care Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

Other research shows that people with M.E. score lower overall on health-related quality of life tests than most other chronic conditions (Hvidberg et al, 2015).

The NICE guideline for M.E. outlines three levels of severity— mild, moderate and severe — as follows:

People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.

People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.

People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

Even in its so-called mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers. Living with M.E. can have a great emotional and financial impact on the life of the person affected. If you’re feeling isolated.

Within Medical institutes, a diagnosis of chronic fatigue syndrome (CFS) or CFS/M.E. is often given. We recognise that it is quite possible that M.E./CFS may be an umbrella term for a number of illnesses. Therefore, it is critical that there is more biomedical research to further investigate and validate our understanding and increase knowledge of the different sub-groups (phenotypes) of M.E. and/or CFS.

Useful supports

Irish ME/CFS Association, http://www.irishmecfs.org/

Irish ME Trust [IMET], https://www.imet.ie/

ME Advocates Ireland, http://meadvocatesireland.blogspot.com/

Also see https://www.actionforme.org.uk