Saturday, 28 February 2015
Encore: "I'm not mental, I have a virus."
It is Saturday, February 28th 2015 and I have just read a report about scientists finding evidence that Chronic Fatigue Syndrome/ME has a biological cause.
Many of you will know that this illness can be controversial, more so than others.
I sighed with frustration. It is THIRTY years since I experienced this illness. In 2011 I wrote about my experience on my first blog. I have ‘cut and paste’ it for this blog.
WEDNESDAY, 3 AUGUST 2011
"You're mental!" No, I am not, I have a virus.
A feeling of deja vu came over me, as I read another news report on Myalgic Encephalomyelitis (ME). This can also be known as Chronic Fatigue Syndrome (CFS). Yet another article about whether it's a psychological disorder or a physical illness.
I do not condone the stupidity of violence and death threats. But feeling extremely unwell and being told that it all may be in your head eg: "You're mental", does raise people's emotions and 'emotional arousal causes stupidity'.
This is a tale of two women:
In May 1986, Ruth was 37, a mother of two children and a part timer worker in a supermarket. In fact her birthday had been part of a busy weekend organising a local fun run, 'Run the World' for Sports Relief. The run was a success, but Ruth felt physically exhausted after three weeks of concentrated organisation. The following week she started a cold.
The cold didn't go away as quickly as usual and two weeks later, Ruth's legs started to feel a bit wobbly, like jelly. No aches or pains, but something not right. Something she'd never felt before. She still felt tired, very tired.
Twenty years before, Ruth had been laid low with anaemia, so she knew what extreme tiredness felt like, but this tiredness was different. An all over fatigue with wobbly legs and now some muscles aches.
Ruth had to take sick leave from work and spent most of the day on the sofa. Her arms were feeling like jelly too. She would make a meal for the family in the evening, but that was all she could manage. She felt a bit of a fraud, as Wimbledon tennis fortnight started and she could sit and watch it. Except she didn't. She lay for hours on the sofa dozing, doing nothing, not even interested in the tennis. She knew then that she must be very ill.
The GP did all the blood tests and heart tests too, but everything came back okay. Ruth was getting worried. She didn't seem to be able to think straight, her head felt like cotton wool and she couldn't finish sentences. She begun to think about Multiple Sclerosis.
The daily routine was the same. Get up to see the children off to school, collapse on the sofa, drive to local shop, get some food, cook a meal, collapse again. The ironing piled up and her teenage daughter was offered payment to do it. The garden was neglected.
There was going to be another royal wedding in July, this time between Prince Andrew and Fergie. Ruth had helped organise the Silver Jubilee street party and was fresh from organising the fun run. A neighbour rang the door bell. She asked Ruth, whether she could organise another street party. Ruth apologised, but said that she wasn't well enough. The front door closed and Ruth thought, "I don't care".
"I don't care". The words haunted Ruth. She had always cared. Now she didn't. It was at that point that Ruth recognised something was very wrong. Now her brain was affected too.
A pattern was emerging. If Ruth was still, the jelly arms and legs felt okay. Then she would do a tiny bit of activity and the muscles would ache again. The feeling frightened her, so the temptation not to move was enormous, but she had to do something, even if it was only the evening meal.
Now it was August and the family had planned to go on a camping holiday around Europe. The GP told her not to go. Ruth didn't want to deprive the family of their holiday and told them that she thought they should go, but everyone was going to have do a bit more work than they usually did. The children were certainly old enough and didn't mind.
The holiday turned out to be a success. Ruth rested and on her return was feeling slightly stronger. She went to the hairdressers. She was given a copy of Vogue, not a magazine she would normally read. There was an article on the Round the World sailor, Clare Frances. Clare had an illness called ME. She described her symptoms and something she described as brain fog. Ruth nearly leapt out of the chair. "This is me", she wanted to cry out.
Tearing the article from the magazine, she took it to her GP, who said that ME was a possible diagnosis, but not much was known about it. Ruth was slowly getting stronger, but the GP told her that if her illness had been triggered by a virus, then it would be possible that if the virus came back, then so would ME.
Eventually Ruth returned to work, but any over tiredness, would cause the leg muscles to ache. This was frightening, as Ruth didn't want to go back to the state she had been in the summer months. So her recovery involved a great deal of 'two steps forwards, one back' and battling with the very real fear of the fatigue returning.
Two years later, Ruth was climbing in the Lake District.
The left leg muscles did ache every so often, but acted as a barometer for overdoing things, which has proved very useful.
Around the same time, a friend, Anne, had also developed a mystery illness. Her limbs ached, her head felt fuzzy and she, too, couldn't move off the sofa. Fortunately she didn't have to, as her mother was able to come round to look after her, when her husband wasn't around. Every time Anne tried to do anything, the muscles would ache, so there was no point of doing anything at all. Her mother and husband wouldn't let her anyway. Not even make a cup of tea. Days, weeks and months of doing nothing at all. Anne developed clinical depression. Her ME and depression lasted for years.
So is ME just a psychological illness or is it viral illness? The arguments raged in 1986 and they are still raging.
Amongst the controversial, but proven treatments is 'graded/phased exercise' and talking therapies.
Every day, because she had to move, Ruth did some graded exercise. Due to the care the Anne received, she did not. Every day, Ruth had a challenge to meet. The evening meal,
made all but one night. Anne did not. Ruth was a naturally optimistic person, Anne was a bit of a moaner. Naturally, Anne told Ruth that she had ME and that Ruth did not.
Some people said that Ruth's family should have been more caring and done more to help. Ruth is very pleased that they did not. There's an expression, 'killing with kindness'. Maybe, with all the best intentions in the world, that's what happened to Anne.
A great many illness will have depression listed as a consequence. For instance, depression is often listed as a result of heart disease and cancer. Many people believe that because they've got one, they will have the other and there's nothing that can be done about it. I don't believe that to be true.
It reminds me of an elderly relative, who lived with her unmarried daughter. She developed shingles. A painful condition. The GP said it would last three years. She took to her bed and stayed there for three years, waited on hand and foot by her daughter.
On the other hand, my father-in-law was an active man, became paralysed at the age of 55. Due to an overdose of some treatment, he then became blind. He cooked and did the gardening and had regular carers. He was never depressed, despite his wife slowly developing Alzheimers and having to go into a home. When age eventually led to a weakening of his arms and thus a need for residential care, he died after six weeks. No challenges, no point in living.
Any illness (and life event) can lower the mood and lead to large amounts of introspection. The person's needs will change and need to be attended to. Taking medication can alter the mood and taking more than one medication needs to be properly controlled. ( I always become weepy taking anti-biotics, but now recognise it's the medication, not the infection.)
I believe that most cases of ME/CFS can be attributed to a viral infection.
I do not believe that ME/CFS is a psychological/mental illness.
I do believe that the fear of exercising and making matters worse, can override the necessity to do some exercise, even a little.
I do believe that how ME/CFS is managed by the patient, family and the doctors can make an enormous difference to recovery.
I do believe that any illness, including ME/CFS can lead to emotional problems. Fear being the primary emotion.
I do believe that mental illness, should be re-named emotional illness.
Remember, 'Life is a terminal illness'. It's how we manage the ups and downs of life that is the clue to survival.
If you hadn't already guessed, Ruth is me.
Surely, you are not suggesting that severe mental illness i.e. that of genetic origin is an emotional illness as that would be to trivialise the unquantifiable suffering these people experience despite their "needs" being well met?
Thank you for writing.
I could never trivialise severe mental illness, because I have observed the distress that befalls the person experiencing it and their nearest and dearest. It's a question that I don't think has a straight forward answer, but I will answer as honestly as I can.
I feel that the genetic aspect of diagnosis for many, may touch the 'nature or nurture' argument, to which there is no resolution. I have seen hundreds of people diagnosed with severe mental illness and had family given that label too.
I believe that someone can experience brain damage and develop a severe mental illness. Brain damage can occur through accident, intentional harm and substance abuse. There are people born on the autistic spectrum and those who develop PTSD. (Post Traumatic Stress Disorder).
I believe that each person who has been given a severe mental illness label should be looked as at an individual. In the majority of cases, I believe that there could be evidence of an emotional trauma, often from childhood.
The majority of these emotional traumas are connected with a person not having their needs met in childhood, actually or perceived. The trauma can cause emotional problems, sometimes severe, rather than severe mental illness.
I dislike the term mental illness, which has a stigma attached and is often dealt with inappropriately. Emotional distress on a varying scale, leading to cognitive and behavioural impairment would be a more accurate description.
I am by no means alone in believing there to be a scandal of misdiagnosis and prescribing in the field of psychological medicine.
Thank you for your interest.