“ME is debilitating, misunderstood, confusing and unpredictable” – Pippa

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12th May is International ME awareness day. You know ME, it’s the lazy people’s disease? Well, it’s estimated that over 28 million people now suffer from it in the world and in the US alone, more people now have ME than AIDS.

I have suffered from ME for 13 years, since I was 14. I got glandular fever and it simply never went away. Instead it mutated into a new, terrifying beast. ME is debilitating, misunderstood, confusing and unpredictable. Even the name is debated. Many people prefer the term CFS or Chronic Fatigue Syndrome over ME which stands for Myalgic Encephalomyelitis. It is pure medical semantics, but they both generally describe the same condition – depending on your doctor’s preferred interpretation! The prognosis is ill-defined and unknown too. The best anyone can tell you is that if you contracted is when you were under 18 then you stand a better chance of one day getting better than if you contracted it over the age of 18.

I first came to Cardiff because of my disease, but this was ultimately an extremely happy and serendipitous event. I had been told by my doctors I wasn’t well enough to go to university, but that wasn’t a very sensible thing to tell me, a stubborn over-achiever –  Cardiff was near enough to home for me to be a part time student and have my wonderful mother drive me to each lecture, then straight home to bed again. The understanding and kindness afforded by Cardiff University’s English Department – especially Prof. Martin Coyle – was what made me first love the city. I didn’t just feel welcomed by the university, but the place. After battling through school and a system not set up to understand my disease, I was met by people determined to help find a way to make it easy for me to study because they saw the passion I had for the subject. Without their dedication I would never had gained the confidence to explore Cardiff, make friends here and make this city my home. I cannot imagine living anywhere else in the UK.

Cardiff Council on the whole is pretty terrible with regards to disability – but the people more than make up for that. Certain councillors and fabulous people like journalist Hannah Waldram (ex of Guardian Cardiff) have helped me, for example, when the council wouldn’t let me park outside my home (pretty vital when you often need sticks to walk with!). Also, Cardiff is a small enough city (and a flat one!) to make city living easily accessible to me.

The welcoming, friendly mood of the city has helped me grow in confidence with my illness. The stigma with ME/CFS is so strong I have spent much of my life terrified to tell people I am ill, but of course you have to. Firstly, because you need to know if your friends are ok with it otherwise they’re pretty lousy friends, and secondly, because people need to know they are encountering people with the disease – otherwise how will we ever help spread awareness?

I feel I have received such positive reactions from my friends in Cardiff. It’s been so different from other experiences when people are too uncomfortable after a while to talk to you again. Even my parents have lost friends because of my illness – it made their friends embarrassed, uncomfortable. Instead, the people I have met and come to cherish in Cardiff, if they don’t know about it, they ask, or they just accept it. Perhaps in Cardiff we’re all slightly odd and so we are ready and willing to accept each others’ foibles and issues. Who knows? Whatever it is I can’t help but feel it is unique to the city as it is an attitude en masse that I haven’t experienced anywhere else.

I have always loved music. My ME only really got very severe when I was 19 and before that I was training to be an opera singer. I come from a musical family too and so, unsurprisingly, the often-dubbed ‘friendly incestuousness’ of the Cardiff music scene is something that I cherish about the city. We are so lucky here to have a ridiculously talented pool of musicians and music professionals; Gruff Rhys, Future of The Left, The Gentle Good, Swn, Spillers Records, Musicbox. I do a lot of music photography and my favorite event each year to shoot is undoubtedly Swn festival. I hate stadium shows, I hate the impersonality of the photographs they produce. I like sweaty, cramped gigs where you feel the music, which is what Swn provides. Shooting that passion and energy is exciting and energising in itself. Each year I have been lucky enough for my photos to be used by various news outlets such as BBC and Guardian Blogs, so even in the face of this horrible disease, I make sure when I am having good periods, I make them count. I don’t miss out. I am trying my damndest to build a life and a career that can sometimes be dipped in and out of, although it is often an impossible struggle, and the older I get the more difficult this seems to be.

Each year I live in Cardiff I watch it develop, become more creative and exciting with the introduction of things such as Third Floor Gallery. And yet one of the most exciting artistic elements of the city has stood here for nearly 100 years. Once described by a Daily Telegraph art critic as Britains “hidden artistic gem”, The National Museum of Wales in Cardiff is my favourite part of the city and I still remember my first visit there in technicolor with each painting and sculpture still perfectly arranged in my mind. I remember seeing some of the Monet Rouen cathedral paintings and being bewildered. I’d seen others in the series in the Musee D’Orsay in Paris but some of them had been missing, and they had been here, in Cardiff, in this beautiful white marble home. In short, its collection of art is breathtaking. It houses such important and beautiful pieces that take so many people by surprise. The gallery works as a metaphor for Cardiff. We get a bad wrap for being the “binge drinking capital of the world” and such, but when people actually take the time to truly experience cardiff, walk through the rooms and study the pieces and “gems” that make up this city, they are astounded it was here under their noses all along and that such a small corner of Wales can house such talent, compassion, and culture.

At times I have been almost completely well, which has been magical. I have managed to do long distance swimming (keeping as fit as possible is definitely the key to keeping on top of the disease), I’ve travelled the world (if only to sit in the sun, but that doesn’t make me much different from anyone else), and I’ve enjoyed a full social life. I’ve had to fit all of my life’s experiences, however, into about 20% of my time, because the flip side to the last 13 years have been overwhelmingly debilitating, unpredictable, and totally devastating relapses that take months to years to rehabilitate from. I get to a point where I am in bed, struggling to reach for a drink, or turn over without help, unable to hold a book. I’ll need help getting to the toilet, washing, brushing my hair, dressing. Most people’s belief of ME is that it makes you tired. Which it does, but in the most extreme way that would be, in layman’s terms, more akin to military sleep deprivation. However, it also causes many other symptoms relating to your central nervous system, cognitive problems – the most common being a ‘foggy’ brain with short term memory loss and concentration problems, muscular pain (fibromyalgia), a compromised immune system leading to higher rate of infection and constant flu like symptoms, sleep disturbances, photo and phonophobia and many more besides. When I relapse I am unlucky enough to be put in the worst five percent of M.E sufferers. Some people with M.E/CFS experience a more constant low level tiredness which is no less debilitating or upsetting – there are simply varying levels of severity of the disease. To be in the most severe five percent means I have been ill enough to be hospitalised, and many sufferers even need feeding and oxygen tubes – Something I am grateful I have never had to experience. In short, M.E can kill you because you are left without the energy to keep yourself alive.

There are other worrying medical abnormalities associated with your body being too tired to regulate itself too. For example, last June I was in a hypoglycemic coma (though I’m not diabetic), and more recently spent nine days in hospital because I had a rare form of migraine that mimicked a brain tumour – all caused by my brain and body being exhausted from the ME.

Sadly, and I can honestly say I understand why this would happen, many ME sufferers cannot overcome the horrific reality of their illness, especially in adulthood where it can break up marriages, cause infertility (if you are well enough to look after children at all), and leave you unable to work. The desperation is made all the more pressing so little is known about the disease. Unsurprisingly, the suicide rate among ME sufferers is very high. Some months I manage to work part time as a photographer. But many I can not. It drives me mad. The unpredictability. Not knowing when you might relapse is heartbreaking sometimes. You learn life is about compromise early on with ME. You learn you don’t get to socialise unless you pace yourself and rest and you don’t get to work unless you pace yourself and don’t really let yourself have too much fun.

Many people believe that ME is a modern illness – an indulgence, if you will. It is anything but. ‘They’ think the modern world panders to eccentrics, that ME is ‘allowed’ to go on and it is almost too painful to write the things I have been told over the years to this effect. Obviously the most common stigma we have to overcome is that often, because we have good periods and bad periods is that people will say we don’t look ill. Also, it is impossible for some people to accept that even young people in their 20s can be disabled. This sounds weird but it is true. I have a disabled badge for my car, but I still have to argue most trips to the supermarket, as I am being helped out of my car by my boyfriend, that I have the right to park in a disabled space. People see a young person with no disfigurement, not in a wheelchair and cannot connect that with disability. The fact that swimming has been my main physiotherapy causes similar problems too. I often need help getting into the pool, but when I’m in the pool I am pain free because my body and blood pressure is supported and can move so much more freely. So I can’t be ill, right?

ME is anything but a modern disease, however. Literature chronicles people dying of ‘failing’ going back hundreds of years and there is a strong argument that this ‘failing’ in many cases could have been ME. For example, if you had ME just 50 years ago you were either put in a mental institution, many believing this ‘refusal’ to move being some sort of madness, or died from not having the energy to feed yourself or from the inability to fight the constant infections you were subjected to due a compromised immune system and a lack of antibiotics. There was no sick pay. If you couldn’t work, you couldn’t earn, you couldn’t eat, you couldn’t live. I grieve for those who have suffered from this disease before me. We are still in the dark ages. We still desperately need more research as every glimpse of ‘proof’ or theory is disputed by each country’s scientists, but at least we live in a time where this disease is now ‘indulged’ enough to mean that ME sufferers have medical help to be kept alive.

In Wales we are worse off than most areas of the UK for ME specialists. We have one consultant in Newport and there is a pain management centre in Brecon, but even people like me aren’t eligible for funding for it. And it is for pain. Not ME. This illness ruins lives. I was almost better then an inexplicable relapse put me in hospital and left me unable to work for an unknown length of time. Many people severely affected even need oxygen and feeding tubes. It is so much more than people think and the USA is doing fantastic research, but here we need to improve understanding and increase research funding.

So please support International ME Awareness Day. The best thing you can do is to learn a bit more about the disease – The best place to do it is at the ‘Get Informed‘ page at the actionforme.org.uk charity site. On May 12th, tweet the link, post it on your profile and help increase awareness and understanding for this stigmatised disease. We need the government to put more money into research. You can also support the Facebook page for ME awareness day. Or donate to ME Research UK, the UK body funding biomedical research into the disease.

You can see Pippa’s photography including music photography online at pippabennett.com and she writes a blog about her experiences about living with ME. She currently lives in Cardiff city centre.

Pippa was photographed at Clwb Ifor Bach by Adam Chard

 

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4 responses to ““ME is debilitating, misunderstood, confusing and unpredictable” – Pippa

  1. Pingback: ‘ME is debilitating, misunderstood, confusing and unpredictable’ | WAMES (Working for ME in Wales)·

  2. Pingback: ME yn wanychol, nas deellir, dryslyd ac yn anrhagweladwy | WAMES – CYMRAEG·

  3. Thank you for your honesty. I too have CFS/ME, it’s the most horrid illness, changes your life dramatically, every day is about making compromises and accepting help from others because the cost of doing it myself is too great. People’s reactions can vary so much, can’t they? Some friends just didn’t believe me at first, but people I barely knew we’re much more understanding. Some days I can walk without a stick, most I can’t. some days I just can’t walk at all. I paint, it keeps me sane and is useful and productive. I wish you all good things.

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  4. You wonderful people with or without me.
    Has anyone heard of or had experience with soemac machine? Having to leave with me is nobody’s choice and certainly not a lifestyle choice many government agencies would like to make people believe. I never dreamt of a future where I would have little in my hands other than contemplating a past stolen from me by this disease that will not let go.

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