Name:
Suzy [from Invest in ME]
‘A nasty deterioration started to set in quickly. Apart from other worsening problems that Suzy began to experience, she found herself needing to lie down for most of the day since any activity, physical or mental, was becoming impossible.
Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.
The months dragged by. For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.
By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.
Eventually (making it sound much simpler than the choice actually was) we decided to reduce this procedure to just once a day instead of twice, and to aim for one hour of time awake for Suzy between 7 and 8 in the evenings.
As before, Suzy would only wake up after Mum or Dad had sat beside her bed for 3 hours gently trying, very occasionally, to coax her out of her comatose state.
We gradually reduced this 3 hour period, but it took over 18 months (until around June 2004) of painfully slow improvement in Suzy's state, for us to dispense with it altogether.
Suzy's motivation for waking had always been that she was desperate to try to eat (even though this wasn't always possible), as she was so fearful of being tube fed as we were told must be the case----- just as she begged us not to let her be hospitalised, as this was also something we were facing.
(It's only by understanding gained from living with this condition that our desperation to keep our daughter at home could be understood.)
Suzy was in a "living death" state for the first two years after her illness became really severe. Many would still regard her as such since her condition remains very sad.
Even up to around October 2004, two people in the room or one person stringing more than three sentences together was too much for her. Thankfully, things in this respect have now improved. Though the two people are still mostly restricted to Mum and Dad, wonderful exceptions have begun to happen recently for 10 - 15 minutes later in the day.
Suzy's life was, and still is (except for her fans no longer being continually on), spent in a perpetually darkened, unheated, noise-free room. There are blankets over the curtains---- despite it being a north facing room; bedside fans are periodically on---- even though she only wears thin short-sleeved T-shirts all year round and; ear plugs in----- even though the room is in a very quiet location). (…)
There is a positive movement---- albeit inconsistent---- undoubtedly happening in Suzy's condition. In fact recently it is happening relatively quickly. We are just so frightened of when and where it might stop.
We feel this improvement has emerged because of our developing confidence in being able to reject [psychiatrically based] medical approaches to Suzy's severe ME, and to the departures we chose to make from these treatments. (…)
2. We were certain that the graded exercise program Suzy followed in the early stages of her ME was a big mistake. We had no hesitation in no longer sticking to any kind of graded exercise routine. Instead we took the approach of letting Suzy do what she felt she could do----- which for nearly two years was nothing at all. This is a second option we are convinced we made the right choice over.
3. Stopping the involvement of psychologists
A third decision we know to have been the right decision, was to stop the involvement of psychologists in an illness we are convinced is not psychological.’
Name: Emma [from Invest in ME]
This was the second paediatrician I had spoken to, the first wanted to repeat all the blood tests from a few weeks before, and was suggesting anti-depressants and a hospital stay before he'd even seen her. Emma was now so noise sensitive that I couldn't listen to the radio at home and the thrice-daily playtime at the nearby school would reduce her to tears. She was also very light sensitive and had the curtains permanently drawn. Bright lights or sunshine made her to weep with pain. Hospital would be agonising.
We borrowed a wheelchair from the Red Cross, bless them, to get to appointments, and to escape from the flat we went out using my new toy, a bat detector. Fortunately there was a roost just up the road that was accessible by wheelchair and bats like it quiet and dark too.
Some time around May or June 2003 I got a letter from social services asking me to contact them. In my innocence I thought it was a follow up to our claim for DLA (Disability Living Allowance), so from the disability team offering support. Not a bit of it, my sister had reported me for suspected Munchausen's by Proxy. The fact that she hadn't seen us for two years hadn't held her back. So to add to the difficulties of dealing with the school, the benefits system, a paediatrician from hell and a sick child, I now had to deal with a social services investigation. Fortunately, I laughed it off and suggested they check their files - we'd been there before when I wouldn't play ball with my dysfunctional family and that social worker had decided that I deserved sympathy: she found my family overbearing. I heard no more about the investigation, just silence. But it meant that I felt as if I couldn't contact Social Services for support in case I reopened that particular can of worms.
We also had a visit from the medical examiner from DLA. I'd read such horror stories of DLA being turned down that I pushed Emma to overdo it the day before so he could see how ill she really was. It was a mistake. She was back to having full body spasms, having to be held down on the bed so that she didn't involuntarily flick herself off on to the floor. It also took weeks to recover.
Another little humiliation was the monthly visit from the Educational Welfare Officer. He was pleasant enough, but the permanent checking up by officialdom was not. It also used energy better spent constructively.
This isn't all doom and gloom. Now, in April 2005, my daughter is much better and is doing her best to "pass as normal" at college. She's attending part time, taking 3 AS levels to add to the 5 GCSEs she passed well last summer. It has taken all this time inching forward to get this far, including over a year using a wheelchair. We passed on the GET (graded exercise therapy) and CBT (cognitive behaviour therapy), which was all that was on offer and relied on pacing and diet as treatment - going it alone.
A Personal Story-Sheila Barry
[Online]
‘You will have heard, or you will hear, from people who are very qualified to speak here - I regard myself as an ordinary mother but then nothing is ordinary if you have an ME sufferer in the family. So why have I travelled down from York to speak at this book launch. I am here to tell you of the devastating effect the situation outlined in this book, has on the lives of ME sufferers. Skewed clearly outlines the reasons why many of those suffering from ME feel alone, isolated and have little hope for the future.
I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions.
Psychiatrists classify a condition when a number of them are able to agree a criteria. They have no diagnostic tests. It is simply a matter of opinion.
I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life.’
