Michelle Penny talks of living with ME for the last 17 years | WalesOnline.co.uk | 18 July 2012

July 18, 2012


From WalesOnline.co.uk, 18 July 2012 (story by Rachel Mainwearing).

For the last 17 years, Michelle Penny has been crippled by chronic fatigue and pain, which has left her virtually bed-bound. She tells Rachel Mainwaring what it’s like living with ME

Every morning when Michelle Penny wakes up, she longs to jump out of bed, walk over to her wardrobe and get herself dressed.

At the age of 27, she longs to be standing in front of a classroom of primary school children, fulfilling her dream of teaching.

Instead, she spends all her time sitting up in her bed, staring at the same four walls and looking through the slatted blinds to the road outside.

She has lived in her house in Dinas Powys, alongside her mum Sylvia and older brother David, 29, for three years but has no idea who any of her neighbours are or what they look like. In fact, she thinks most of them are unaware of her existence because she has rarely been out of the house since she moved in.

Michelle suffers from a condition called ME – otherwise known as Myalgic Encephalomyelitis – a neurological condition that causes chronic fatigue, muscle pain and a lack of concentration.

Although she longs to get herself dressed, she hasn’t the energy. Although she loves to read, she can’t concentrate for long enough and even the TV, which sits on a shelf at the bottom of her bed, is rarely used because she cannot focus on it for long periods.

Michelle has lived with this condition for 17 years, and she went on to suffer several bouts of illness as a child and throughout school.

She left without any qualifications, has very few friends living near her for support and relies on mum Sylvia for everything.

“I relapsed in October and this is probably the worst I’ve ever been,” says Michelle. “People think it’s just a condition that makes you tired all the time but it’s worse then that. It’s the pain that’s the worst thing. It’s not that I’m not motivated to do things, I just can’t. I just don’t have the energy and my legs really hurt.

“It all started when I was 10 or 11 and was poorly, with what doctors described as a chronic fatigue-type of illness but as I got older, it got worse and worse and I had to have prolonged absences from school.

“Consequently, at 16, I left with no qualifications but my dream is to be a teacher and one day, when, not if, but when I get better, I will go to college and train. Education is a lifelong process after all.

“Although I can’t get out of bed at the moment, I haven’t given up. I’m determined not to let this beat me. I have to believe that I will beat it or what’s the point? I’ve seen so many doctors and specialists over the years but no-one seems to want to help me.

“In 1999, I saw an ME specialist and was given Graded Exercise Therapy and Cognitive Behavioural Therapy to try and help but it didn’t work. Since then hardly anyone has been prepared to take on my case.”

Michelle’s condition means she is also very sensitive to light and noise so, while sitting in bed, she has a slightly darkened room with very little natural light coming in, and plays her iPod very quietly, just to provide some background noise.

“ME is a very contentious issue because many people, doctors included, refuse to acknowledge that it exists. They think it is a psychological illness, but it’s very frustrating to find yourself in a position where you have been virtually house-bound

“It’s more than just being tired. I have trouble concentrating so I can’t even read books anymore, even though I used to love to read. I also get very random headaches.

“I used to have a really active life and Mum, who is a full-time carer to me and David, who is autistic, was like a taxi service, driving me to swimming, Guides or choir.

“It’s not that I don’t want to be out doing things, I simply can’t. I’d love to be able to get out of bed in the morning and get myself dressed but Mum has to do everything for me.

“I’m not depressed, I just want to have a normal life. I managed to get four GCSEs from e-learning, but could only manage to do about 45 minutes study each week so it was a long process.

“I suppose I’m happy to talk about it as I want to raise awareness of ME because people don’t seem to know an awful lot about it or believe it exists but I’m living proof.

“I’m 27 and have spent 17 years suffering from pain and exhaustion. On good days, I can spend some time online but I can’t even do that at the moment. I try to keep to a routine, always going to bed at the same time and waking at the same time but there’s not much I can do in between.”

Michelle’s mum Sylvia has been a beacon of support for her daughter and wishes she could help her daughter get better.

She says: “Michelle is such a positive girl. I don’t really know how she does it. She has never felt sorry for herself despite not being able to do much and she is very determined to get well again.

“It’s such a frustrating illness because so few doctors are prepared to take it on but she remains very focussed on getting well again.”

WHAT IS ME?

Myalgic Encephalomyelitis (ME) is an illness with many names. Within the NHS it is commonly called Chronic Fatigue Syndrome (CFS or CFS/ME). Sometimes it is known as Myalgic Encephalopathy or diagnosed as Post Viral Fatigue Syndrome (PVFS).

SYMPTOMS?

It is a long-term (chronic), fluctuating illness that causes symptoms affecting the body systems, more commonly the nervous and immune systems. Many people with ME experience persistent fatigue or pain.

Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace.

In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.

WHO DOES IT AFFECT?

Recent figures estimate that there are 12,000 people in Wales suffering from ME and it is believed that some 250,000 people in Britain are affected.

All types of people at all ages can be affected.

DIAGNOSIS?

There is no medical laboratory test currently available to detect ME Doctors diagnose the illness by assessing your medical history, recognising the typical symptom pattern of ME and conducting basic tests, for example on blood or urine samples, to rule out other conditions.

TREATMENT:

There isn’t a magic pill that can cure ME but a number of approaches can help. These include: pain management, diet and nutrition, Graded Activity Therapy, Cognitive Behavioural Therapy and complementary therapies.

WILL I GET BETTER?

For many, the illness fluctuates, with periods of remission and relapse. A small minority are severely affected (bed-bound or house-bound) for a long time. Most people improve over time, especially with treatment. People often find that they don’t go back completely to the way they felt before they became ill but they do recover sufficiently and/or learn to manage their symptoms well enough to lead happy and fulfilling lives.

For more information, contact Welsh Association of ME & CFS Support www.wames.org.uk Helpline: 029 2051 5061.

4 thoughts on “Michelle Penny talks of living with ME for the last 17 years | WalesOnline.co.uk | 18 July 2012”

  1. Brave girl.

    I do wonder what the true figures are nowadays for ME in Britain? 250,000 has been the accepted figure since at least the year 2000. I’m sure there was an epidemiological study done quite recently that looked at patient numbers – but in only 3 counties and the figures were then expanded for the UK/Britain as a whole.

    Also “a small minority are severely affected” – I thought the figure was 25%. Again, it would be good to know for a fact.

    How many GP surgeries are there in the country I wonder and could the DoH simply contact them with a mandate to provide current figures for the number of registered patients each GP has diagnosed with ME/CFS?

    Pretty easy and straightforward job requiring minimal funding and resources and which could be assigned to a school leaver/jobseeker!
    For goodness sake, give me the letterhead and I’ll do it myself.

  2. How many of these children have ever properly been assessed for Lyme Disease.
    The NICE guidelines say that this must be excluded before a diagnosis of ME/CFS is given yet rarely does that happen.
    This is a link to an excellent presentation from a doctor that specialises in ME/CFS and needs to be watched by everyone in the ME/CFS community.
    I know Dr Shepherd follows the developments on Lyme Disease science closely, so I am sure he will be very interested to hear the presentation on persistence of infection despite long courses of antibiotics from Dr Barthold at the congressional hearing yesterday http://foreignaffairs.house.gov/112/HHRG-112-FA16-WState-BartholdS-20120717.pdf
    ‘Persisting viable but non-cultivable B. burgdorferi is now a convincing phenomenon based upon
    a number of animal-based (mouse, dog and primate) studies using a number of different
    antibiotics, and the significance of continued infection indeed needs to be better understood. It
    is time to recognize that Lyme disease is not a simple bacterial infection.’
    For further links to the hearing visit UK charity Lyme Disease Action http://www.lymediseaseaction.org.uk/latest-news/us-congressional-hearing-on-lyme-disease/

    Lets see a concerted effort from the ME Association in helping patients identify properly whether this is part of the problem or the whole problem of their underlying condition. It was for me and for very many other patients too.

    Many have made a significant recovery on just antibiotics.

  3. After being diagnosed with ME (doctors originally tried to say it was CFS or all in my mind)I had a private test for Lyme 6yrs ago and it was positive. Why are doctors/governments denying Lyme exists? Is it because Lyme may have been manufactured in a laboratory like AIDS. It has been suggested by Lady Mar it could be a ‘germ warfare agent!

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