Sunday 20 August 2017

'ME is a nasty, insidious disease... it thieves from every element of your life' - life with chronic fatigue syndrome

Myalgic encephalomyelitis sufferer Anne Brennan writes about her long, painful, frustrating battle with the disease that has stolen her once full and vibrant life

Anne Brennan who lives with ME/CFS at home in Ballinroe Co Tipperary
Anne Brennan who lives with ME/CFS at home in Ballinroe Co Tipperary
ME can be a lonely fight - there are up to 12,000 people in Ireland affected by the disease

Five years ago, I was flying high: I was a partner in my Dublin law firm, a zealous skier, an untalented tag-rugby player. I taught yoga in the evenings and at weekends, never missed a party.

I love live music and often stood for hours waiting to see Justin, Robbie, Bowie, Beyoncé or George Michael. When Eminem played, I hopped on a bus to Punchestown along with 40 or so teenagers.

Anne Brennan (40)who lives with ME/CFS at home in Co Tipperary. Photo: Steve Humphreys
Anne Brennan (40)who lives with ME/CFS at home in Co Tipperary. Photo: Steve Humphreys

Then, overnight, everything became a struggle. I collapsed into bed after I got home in the evenings, dragged myself out of bed to go to work the next day. In a permanent state of exhaustion, I began to cancel things. The yoga went first - it was too physically demanding for my poor aching muscles. I cried off drinks and get-togethers. I stopped answering the phone - talking to my friends was beyond my depleted resources. All I thought about was lying down. In a quiet room. Alone.

Work was the last thing to go. During my 14 years with my law firm, I had developed a nasty work habit. Quitting was not an option. Now, I arrived in at 11 and after a couple of hours, my arms became heavy and ached - a great wave of exhastion would come over me. I couldn't understand what was happening to me. A supportive therapist gently prodded me to take some time off work: "Just for a few months," he suggested in his soft English accent. I stared at him in horror: "A few months? But my clients, I have meetings…" When, eventually, I saw my doctor and he diagnosed me with depression, I gladly took the anti-depressant tablets that he prescribed.

To have a name for what was wrong with me was a welcome relief. I went off work. I read up about depression. I set my sights on getting better. I did hot yoga - one of the most physically challenging forms. I pushed my tired, aching bones. Afterwards, I couldn't get out of bed for two days. I became suspicious. This didn't feel like depression. It felt like burnout.

A very private struggle

When I read accounts of high-achieving go-getter types who, like me, had burnt out, I felt they were singing my song. My doctor told me there is no such thing as burnout. I saw a documentary on Netflix by a man with auto-immune illness, who had juiced himself better. I bought a juicer - the slow, expensive kind. I peeled and chopped and pressed vegetables down the tiny chute and chugged down pints of green goodness. I felt pretty good. The truth was that juicing was taking all my energy. All I did was chop and sleep. Leaving the house to buy supplies of vegetables and green apples (the low-sugar fruit component of my regime) was an almost insurmountable effort, but you have to get worse before you get better, right?

I came off my medication. I told my doctor. He said I sounded much better. He pushed me to go back to work. "How are they managing without you?" he demanded to know. "I can't go back yet," I told him, "I just can't." My final weeks in work had been a private hell. Meetings left me depleted. The sound of a ringing phone pierced my brain. I couldn't bear to be around people. Checking my email to find out what else was on the endless list of 'things I couldn't get to' filled me with dread. Boxes of papers and files piled up in front of my desk, but I could not bring myself to open them.

Anne Brennan who lives with ME/CFS at home in Ballinroe Co Tipperary.
Pic Steve Humphreys
21st February 2017
Anne Brennan who lives with ME/CFS at home in Ballinroe Co Tipperary. Pic Steve Humphreys 21st February 2017

Perfectionism

My doctor showed me a website for people with perfectionism. I needed to address my perfectionism. It was clearly at the root of all this. "You have a perfectionist personality," he said. I burst into tears of frustration. "You are the problem," was the clear message. "If you change, you will get better." It was to be the start of a long and grim battle against the message that my symptoms were my own fault. With the tears, my doctor changed his mind: "You have major depression."

In the following weeks and months, I read books and blogs about depression and burnout. I tried one thing and then another. I floundered about without any medical guidance. I moved in with my sister and her family, and later with my parents. I even stayed in a hotel for a little while, just so I could lie in a quiet room and be left alone. I got sicker and sicker. I found a supportive psychiatrist. He listened, we discussed my symptoms and treatment options, he gained my trust.

At first, the dose of anti-depressant medication that he prescribed made my symptoms worse. When I discussed this with my psychiatrist, he reduced my dose and then increased it slowly over many months. The medication helped immensely. Having an understanding ear helped even more. The level of what he labelled 'the fatigue' continued to pose a challenge. He gently pushed me to exercise more. I enjoyed walking on some days, but there were a great many days when standing was a challenge - leaving the house impossible. I moved between sofa and bed. I had other symptoms: an angry, persistent sore throat, weak muscles, nausea, night sweats, aching muscles, painful mouth ulcers, bouts of dizziness, an extreme intolerance to light and sound. I disregarded most of these - they were side effects of the medication; my immune system was run down; I had my eyes lasered a few years earlier, they warned me that sensitivity to light might be a result of the surgery.

What I didn't notice for a long time was how stupid and clumsy I had become. I constantly banged into things and knocked things over. I spend my time wandering around looking for things I have misplaced. Minor tasks that involve working things out, even thinking, such as paying a bill, floor me. I stopped answering the phone. Stopped replying to texts. Missed birthdays. Good friends, struggling with the loss of a vibrant, enthusiastic person from their lives, one by one, stopped calling.

I saw doctors and, eventually, a neurologist, all of whom sent me for rounds of tests, including an MRI of my brain. All of them agreed I was in serious trouble. They used phrases like 'fatigue', 'fibromyalgia' and 'chronic fatigue,' then shrugged their shoulders and said there was nothing they could do to help me. I was sick for over three years before I found a consultant who is familiar with my symptoms and works with many patients with ME. While he cannot cure my illness, he hopes to improve my symptoms.

ME (Myalgic encephalomyelitis)

ME is a nasty, insidious disease. It seeps into, and thieves from, every element of your life. On a 'bad day,' I can have any combination of my myriad symptoms - raging sore throat, bouts of dizziness, weakness in my limbs, pain in my joints and muscles. I am not 'tired', or 'fatigued' or even 'exhausted' - I have been run over by an articulated truck; I have the flu and a ferocious hangover at the same time. A 'bad day' is a horrible, painful and lonely experience. I have a lot of bad days. I also have bad weeks and bad fortnights. Bad patches, I call these. February was a bad month. Bad months are hard. In the early days and weeks and months, my suffering was intensified by the bewilderment and self-blame that accompanied them, and by the general feelings of worthlessness that accompany the inability to work, or to attend to the needs of others, when you have based your whole life, your very identity, around these things.

I am lucky. I have what is described as 'moderate' ME. There are thousands with severe ME. They cannot get out of bed. Many cannot speak or feed themselves. They lie in darkness all day, every day, in severe pain. They cannot write their story for the Irish Independent. They are invisible and voiceless.

I have spent a lot of time crying since I became ill - tears of frustration, of sadness and despair. I cry because I have planned to be somewhere but cannot get up off the sofa, or because I haven't been able to leave the house in five days. I am so sick of being sick. Mostly, when I am upset, I cry alone. I am still afraid of being seen to be weak or vulnerable.

ANTI-DEPRESSANT

I remain on anti-depressant medication. Being housebound and misunderstood present an ongoing challenge to my mental health. Every week it seems someone has a nugget of helpful advice: "If you go for a walk, it will brighten your mood"; "have you tried a bit of yoga?"; "they say mindfulness is very good, are you doing any mindfulness?". For a time, my family took a great liking to jogging. "I read about this fellow that got better by jogging," my brother would say, "why don't you go for a jog?"

That Bressie fellow has a lot to answer for.

Each time someone offers their tuppence worth, I hear: "You are not trying hard enough"; "if you only did the right things, you would get better"; "it is your own fault you are sick". God knows, I have told myself these things often enough. There are times when I believe I am getting better. There are other times when I suspect I am learning to live better with my illness.

I have stopped blaming myself, stopped trying to find the one magic thing, the silver bullet, that will cure me. I have learned that over-exertion exacerbates the symptoms of ME. I have learned this lesson the hard way - by making the same mistakes over and over again. I know the cost of answering the phone when I don't feel well. I know that walking too far can send me to bed for the rest of the day. I know to stop immediately when I start to feel my symptoms acting up. I know that a night away from home will finish me for at least two days. A post-event wipeout can happen immediately, or a day or two later. If I am lucky, I can make it home to my own bed before my system goes down. Then there is nothing I can do but wait for my body to mend itself.

A lonely fight

I am one of 12,000 people in Ireland with this - the Department of Social Protection describes it as "incredibly debilitating" - and distressing illness. It has been compared in severity and physical suffering to that of the advanced stages of HIV. The physical struggle is not the worst part of it. The worst part of it is being so very ill for so very long and not being able to talk about it. We are a very isolated bunch. Many of us are housebound. Some can't leave their bed - ever.

We have neither the strength nor the energy to do the much-needed campaigning work that this illness needs and deserves. Yet doctors claim they don't know how to diagnose it. This is nonsense. There is a very clear profile of an ME sufferer. When I got sick first, I met an old college friend in a pub. He asked me what I was up to. "I'm busy having a nervous breakdown," I said. I described my symptoms. I had less than three sentences out of my mouth when he said, "that's not depression, you have chronic fatigue syndrome. I know, because I have it". Three sentences. Today, I could diagnose ME in five minutes.

TREATMENT

I would love if there was a cure. I would love if there was treatment. But more than anything, I would love to be able to say "I have ME", and have people nod in sympathy. If I had cancer or HIV, people would feel bad for me. 'Chronic fatigue syndrome', ME's more fashionable label, says to people, "I am very tired". In a culture where success and fulfilment are synonymous with hard work, what they hear is, "I am lazy".

Many of my girlfriends from college are mothers with small children. They are struggling with screaming toddlers, sleepless nights and trying to pull off a 'career'. They are tired all the time. They have no understanding of what I am going through. I told a friend who came to visit recently that I spend most of my time in my bedroom. She said: "It's well for some."

I am not tired. I am sick. Standing wears me out. Sitting for too long makes my bones ache. Going to the supermarket is more than I can manage most days. When I do manage to go, I fill a trolley with tins and frozen food.

Choosing what to buy exhausts me. And I always buy the same things in the same supermarket. Going to a new supermarket would finish me for the week. As it is, unloading my frozen vegetables and tins of tuna from the trolley at the till makes my arms ache.

A common question I am asked is: "What are you going to do for money?" Nobody would ask me that if I had cancer. When you are severely ill, your priorities change. There are other things that scare the living daylights out of me more than having no money.

As one ME sufferer said: "The good news is nobody dies. The bad news is nobody dies." No dead people, no public interest story.

But we do die. Jodie Bassett died in Australia on June 11, 2016, from breast cancer. Jodie had severe ME and was too ill to undergo treatment for her cancer. She was 40. Like sufferers of HIV, people with ME die from complications arising from our illness. Our cells and our organs are impaired. We contract cancer because our immune system is impaired.

Last year, I had skin cancer. I was lucky, I caught it early. Now I get checked. When I get a cold or a tummy bug, it takes 10 days to recover. I have severe digestion problems or irritable bowel syndrome (again with the 'syndrome' for a severe, debilitating condition).

My cells don't convert oxygen properly. Anaerobic exercise is dangerous for me. Many ME sufferers exacerbated their condition in the early stages from over-exercise. Young, fit people that our society insists can run or swim their way out of illness ended up in wheelchairs, or in bed, and never recovered.

Some of us have taken our own lives. I have thought about it. On bad days, you think, if I am still like this in five years' time, I need a get-out clause. I take anti-depressants and I tell myself that tomorrow will be better. I go to the pub, even when I don't feel up to it. I go on sunshine holidays. Travelling exhausts me. I wait until everyone is on the plane before I board. Standing in a queue is challenging and I need to preserve my resources for the far side. The sun helps enormously.

Of course, there is the cancer thing to worry about. Being at home alone day after day is dangerous. Your mind can tell you some fairly shocking lies. I want to live. I do the things that remind me of this. I do them early.

When I least feel like seeing people is when I most need to see them. I learned this in a course run by St Patrick's Hospital in Dublin. The course cost several thousand euro. I am lucky: my health insurance paid for it. I pay my psychiatrist myself. I have the money. I am lucky.

ME is not the baffling, mythical 'fatigue' that it has been represented as. The problem is one of lack of information, misinformation and disinterest. Only very recently have I lit upon the wonderful people of the Irish ME/CFS Association and the work they do to support ME sufferers and lobby for this devastating disease to get the attention, recognition and funding it deserves.

Doctors are alarmingly ill-informed. Sufferers are left floundering for years, undiagnosed and misdiagnosed. We are without medical support, doubted and condemned as malingerers by those who ought to know better. People suffering from ME are some of the strongest people I know. We fight the great fight alone.

ME: The facts

ME/chronic fatigue syndrome affects up to 12,000 people in Ireland. Kim Bielenberg on this misunderstood disease

In extreme cases, patients with chronic fatigue syndrome can barely move from their beds. As well as extreme exhaustion, they can suffer severe muscle pain, headaches and cramps. They can have short-term memory loss and sudden lapses in concentration.

Commonly known as myalgic encephalomyelitis, or ME, the condition is thought to affect up to 12,000 people in Ireland.

Despite scepticism in some parts of the medical profession, the World Health Organisation classifies ME as a neurological disorder.

Its causes remain a mystery and explanations range from the after-effects of viral infections and abnormalities in the immune system to psychological stress.

There is no single test to confirm a diagnosis and no recognised drug treatment for the condition.

But, whatever the causes and the controversy surrounding it, there is no doubt that CFS/ME can be a hugely debilitating illness, with some patients suffering such severe muscle pain that they can not walk. They can be housebound for years and unable to work, and the condition can affect children as well as adults.

Tom Kindlon, Assistant Chairman of the Irish ME/CFS Association, says it can be extremely difficult for Irish patients to get diagnosed. He himself first suffered the condition when he was 16, but was not diagnosed until he was 21.

"Some consultants will diagnose it, but they do not necessarily want to get involved in ongoing care," said Mr Kindlon. "Often, a patient is pretty much left to themselves and has to rely on a GP."

According to the Mayo Clinic in the United States, there are eight official signs and symptoms of ME

There has long been controversy over ME in the medical profession.

A study published in The Lancet in 2011 found that a type of psychotherapy, cognitive behavioural therapy (CBT), and graded exercise therapy (GET) were moderately effective in treating the condition.

But the research was heavily criticised by a group of scientists, including ME expert, Professor Ronald Davis of Stanford University, who regard the cause of the illness as physiological rather than psychological.

Dr Charles Shepherd, medical adviser to the ME Association in the UK, says most researchers in the field now accept that it is a neurological condition.

He says the idea that the causes of the illness are psychological is misguided.

"There are still pockets of the medical profession who do not believe in ME, or believe it is hysterical nonsense."

Dr Shepherd likens the causes of ME to a giant jigsaw puzzle, where new pieces keep being added. "It is a complex interaction of infection, disturbances to the immune system and the central nervous system.

"It is an illness that is triggered by an infection. That probably sets off some sort of abnormal immune system response."

This is ME/CFS awareness month and later in May Ros Vallings, a New Zealand doctor and author who specialises in ME treatment, is visiting Ireland to give three talks organised by the Irish ME/CFS Association.

Dr Vallings says we can not yet be sure of what triggers ME, but she believes infections and the response of the immune system are the most likely causes. "A person gets an infection and their immune system fires into action to attack the bugs. When the acute stage of the infection is over, it seems that the immune system remains on high alert and fighting away.

"The symptoms tend to be related to over-activity in the immune system."

Tom Kindlon says there are only a small number of consultants who will diagnose the condition. He advises patients to find a consultant or GP with a good knowledge of ME.

The condition is usually diagnosed by a process of elimination.

"We don't yet have a lab test for ME that will give a 'yes/no' answer," says Dr Vallings. "What a doctor has to do is take a very detailed story from the patient.

"You have to eliminate other conditions where fatigue is a prominent symptom.

"You also have to eliminate conditions where the symptoms could include muscle pain, headaches and fevers.

"Irritable bowel syndrome often overlaps with ME." For Dr Vallings, coping with ME is about managing the symptoms, because there is no known cure. She advises patients on issues such as diet, stress management and sleep.

Depending on the severity of the condition, the patient can adopt a gentle exercise plan, gradually building up their physical activity.

This could start with walking just a few paces, but can be gradually built up.

Dr Vallings advises patients to avoid exercise which causes sweating, panting, heart racing or muscle pain.

"Swimming, walking, yoga, tai chi and cycling are all suitable activities which can be monitored and increased very slowly," she says.

For some patients, the symptoms of ME may be temporary, while, for others, they are long term.

"Managing symptoms is about getting the right balance between activity and rest," says Dr Shepherd. "You want to ensure patients don't try to force their way out of it by going down to the gym, and at the same time, you don't want people going to bed and staying there."

Dr Shepherd says scientists are currently carrying out clinical trials on the drug rituximab - a medication normally used to treat a form of cancer called lymphoma.

Early trials of the drug on CFS/ME patients showed that most improved after repeated doses of rituximab and a quarter went into full remission.

Dr Shepherd says: "There are various other immune system treatments and neurological treatments being tried, but at the moment we are still in the experimental phase.

"They are not yet being prescribed by ordinary GPs."

* May 12 is CFS/ME&FM awareness day. For more on the Irish ME/CFS Association and this month's talks by Dr Ros Vallings, see Irishmecfs.org.

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