Good Day Bad Day (NB This is not steve lamacq related!)

Today I experienced both the good and the truly awful in society.

First the bad, which is the way I would choose the running order to be - the night is darkest before the dawn and all that.

 When I was leaving the pool after managing my first swim this week a man saw me get into my car, which was parked in a disabled bay, and marched with a sense of Daily Mail reader right and wrong towards me. He saw a young person getting into a car, not in a wheelchair, not immediately visibly infirm (my stick was already in the car) and assumed I couldn't be disabled. Assumed that, because all young people are 'disrespectful' and in the wrong that I must be following suit and abusing the disabled parking bays. He unleashed a verbal wrath upon me which, even though I put him firmly in his place, distressed and upset me. I felt judged and utterly misunderstood. this was inverted prejudice and I reacted in an utterly irrational way. I felt assaulted. I felt this man represented every battle I had been up against during my illness. His bloated, grimacing form seemed to deny me my pain and my suffering. In short, it felt shit.

To my surprise, I recovered reasonably quickly after a quick self-indulgent cry only to face the daily struggle to find a disabled parking bay outside my flat. This is an issue I have written to the council about, talked to the police, written to my MP... I've tried everything but nothing has helped the fact that in a bay for 14 cars, on any given day or night, 10/14 cars park there without a disabled badge. I therefore wasn't surprised when I got home to find no spaces free, but all my alternative parking options were also full because it is a Bank Holiday weekend (or as my mother calls them, wank solidly's). There were 2 policemen nearby, however, and when I explained the situation to them they literally couldn't do enough to help me. Despite Friday nights in Cardiff being world-famous (Wall street journal anyone?) for binge-drinking related incidents, they sprung into action, ticketing all the illegally parked cars and in turn allowing me to park incredibly illegally and making sure I wouldn't received a ticket for doing so. Bloody Brilliant! :-D

Graded Exercise - one of the triad of recommended treatments. My thoughts

Here's an excerpt from an email I recently sent to a friend who is about to start graded exercise therapy...

"I was always very sceptical and threatened by the idea of graded exercise and so I wanted to tell you my experience of it in case you were feeling the same. Sorry if this email seems very nosy but no one really knows how this blummin illness works - even people who've been there and so I always feel its important to stick together!

Anyway. Graded exercise... I always felt threatened by the idea as I worried that it was a 'nice' way of saying 'get off your arse you're not ill just forgotten how to get on with things'. Then I realised that I was already on a self-imposed graded exercise programme that I feel has been remarkably beneficial.

I think it gets sold badly. They sell it as a 'cure'. What they should do is explain that by making sure your body is in the best physical shape possible you can make the most of what little energy you have. I think for some people this ends up seemingly to 'cure' them as perhaps they were simply managing their energy poorly before. By starting with yoga, then swimming and progressively building those up by stupidly small increments I got so much better. Right now I am very ill again but I know that carrying on swimming even if its a tiny amount and keeping my body fit I will stand a better chance of pulling out of this slump. When you look at it scientifically it makes a lot of sense. Poorly conditioned muscles take more energy to get going than well conditioned ones. So if you have less energy to start off with you're going to be wasting a lot of it on getting your body kickstarted.

I just wish they would explain it like that to people. Whenever a medical professional's talked about graded exercise to me I've felt like they're being condescending and I've felt I've needed to protect myself from them. I call it the hedgehog reflex. Retreat and resist. But graded exercise is a good thing. I've just had to do it myself because I've found it hard to trust any doctor besides my gp and a psychologist I once used to see.

Sorry for all that! I just wanted to offer you my thoughts incase you were as dubious about it as I once was and hope that this treatment centre can help you get a little more from life if not a lot more.

I've been ill 11 years now and I've learnt one thing. That there is no cure but hundreds of little thing we can do to manage the illness and build our energy up to get the most from ourselves. Even when we're in the worst of slumps/relapses like I am now!

Sorry again! This has been a bit of a soapbox rant! Please don't be too pissed off or scared to email me back. I am capable of listening too!"

A foggy day

Bleurgh! brain fog has descended today and I struggle for any poetic way to describe how that feels. Lots of things that I wanted to start talking about on here, but it will have to wait for another day. Since my relapse a couple of weeks ago life has been pretty horizontal and getting up to go to the loo has been a struggle, but the last couple of days have been a little easier and I even managed to do some washing up today - ROCK AND ROLL OR WHAT? (YAWN!) It's really hard to be 'cool' when you have ME because such menial tasks take up so much of your bloody time.

A short history of My ME

I chose this time to start my blog over any other year in my illness because I have recently had a serious relapse - my worst in 3 years. Relapses are a sharp kick in the balls for anyone with ME because they negate any progress you feel you have made.

I had begun to think I was perhaps getting better properly, steadily but surely taking on more things and learning how to pace myself and make the most of what little energy I have. Pacing is the religion I have to live my life by. Spontanaeity is a foreign word to me because it costs me so dearly. If I try to be careful and not overdo things then I can do far more than I could otherwise. An early lesson my whole family had to learn was to lower our expectations for what I could do day to day. We are a family of high achievers. We don't get ill. We dont fail. So one of us getting such an enigmatic and difficult illness was a quagmire for us. It almost tore us apart as we struggled to understand it and those closest to me couldn't find a way to see how I couldn't just get up and get on with things. I felt the same way. I was sure if I could muster the determination or balls then I would be fine to grit my teeth and carry on, but however much I pushed myself and told myself there was nothing wrong with me, that it was all in my head, getting out of bed was still often impossible.

I contracted ME as a post viral complication of Glandular fever when I was 14. I have spent my teens and early 20's - the years of our lives we are told we can make all our mistakes and find out who we are as individuals - fighting to get through each day.

GCSE's and A-Levels were a nightmare. My school was relatively understanding but it was still a bit of a touchy subject and the government were dragging their heels on an official line the state school system should take. I went in for half of the school day whenever I could. It was horrible. I was so isolated and confused. Learning about the illness, I have come to realise, is the key to managing it. I was depressed and anxious and had to see a psychiatrist. I still feel like I have been 'awkward' and have imposed my illness on my family. I was treading water all that time, fighting a losing battle and never accepting my illness and working with it because I resented it so deeply. I simply believed it would go away in a year, 2 years. Every year it was still with me made my hope and resolve crumble for a while. Some people can recover from ME in a matter of one year, others 4 years, and some never, and nothing is known about how and why. I do everything right these days, follow all the recommended treatments and still it plagues me.

I spent 5 or 6 years trying to understand and accept my illness. You have to tread a fine balance between acceptance and optimism to fight this thing. Only when you accept your limitations can you work around them, and yet if you give into it completely and let the illness construct your identity, then you are trapped by it, and I have met so many good people who never manage to get better or do anything more than lie in bed because they have let this happen. I understand how and why this happens. I know I have only managed to fight as hard as I have because I have the best Mum anyone will ever have. She has been there for me through everything. I only managed to go to university because she drove me to my lectures. She has brushed my hair when I haven't been able to sit up, she has comforted and encouraged me and I will never find the words to thank her for it and easily see how without her help I would also become trapped and defined by my disease, too scared to try and beat it because I simply don't have the energy to.

My illness, like most ME varies wildly in severity. I can get very well, very active now I have learnt more about managing the illness, but then if I overdo things, and sometimes for no reason at all, the relapses keep on coming, rendering me severely disabled and limited physically and mentally (ME seriously f**ks with your cognitive processes). Still in my mind I always hope that 'this time next year' things will be different, I will be able to live without monitoring my every move quite so carefully, I will manage to get some of the last 10 years back. I have missed out on my family, my passions, and whilst trying to live a full life, it's been a half life.

The most commonly prescribed treatments for ME are graded exercise, pacing and CBT (Cognitive behavioural therapy). I somehow combine all 3 into my lifestyle in order to make the most of my life. I will talk more about my thoughts on these treatments another time though.

My breakdown when I was 19 was the turning point in my understanding of ME. I was stressed to breaking point throughout my A Levels. My physical and mental faculties were exhausted. I ended up in a psychiatric hospital and had to build my life from scratch. Literally. I couldn't cope with the stress of even the smallest decisions and had to make lists of everything I had to accomplish each day - brushing my teeth, cleansing my face, everything. It was only then that I found a good psychotherapist who taught me how to accept my illness and how to cope with it better and life since then has been tough but fuller in every way as I juggle my disease with trying to live as full a life as possible.

So - that's a quick round up of the last 10 years - it is all business this post I'm afraid, things that I felt needed to be told until I discuss different aspects of the illness. I promise a more thrilling posting with punches packed everywhere tomorrow!

First things first... ME what?

The most obvious starting place is to go back to basics and catch up for those of you who are a little confused by the modern acronym-philic world we live in. What is ME? The best concise answer I have found online so far is here at the ME research page.

This is what they say:

Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. Early reports dating from 1934 described epidemics of the illness (see Research Publications on ME epidemics for more information) — such as the 1955 outbreak at the Royal Free Hospital in London — but nowadays it is more common for endemic (sporadic) cases to be identified. ME is classified by the World Health Organisation as a neurological illness (International Classification of Disease 10: G93.3).

The cardinal symptoms of ME are profound, generalised post-exertional loss of muscle power (fatigability); muscle pain that may include tenderness and swelling; and neurological signs. Patients are also prone to relapses which may take the form of recurrences of the original systemic illness, or fresh episodes of muscle weakness, neurologic changes or well-defined cognitive problems. As with many chronic illnesses, fatigue may be present, but in ME patients the fatigue is post-exertional, often delayed, and quite unlike the ‘fatigue’ experienced by healthy people.

The cause of ME is still unknown, but there is unlikely to be one single causative agent. Several early epidemics appear to have been triggered off by an outbreak of an infection with enteric organisms or poliovirus which then subsided, and many patients report an infectious onset to their illness. However, in others, there may have been a variety of contributing factors — infectious, traumatic, environmental and endogenous — all of which can lead on to a condition which shares a set of common symptoms.

Why do some people use the term ME/CFS?
During the 1990s, the term ‘chronic fatigue syndrome’ (CFS) came into vogue. Since there was no specific diagnostic test for ME, and since post-exercise ‘fatigue’ was one of its prominent symptoms, people with ME began to be diagnosed with ‘CFS’. In recent years, however, there has been a growing recognition that the diagnosis ‘CFS’ — based on a list of vague non-specific symptoms — is so broad that it encompasses a range of diverse patient groups. A recent revised Canadian definition has suggested that people with ME be recognised as a separate subgroup of CFS. At present, efforts are being made to remedy the diagnostic confusion and meanwhile the term ME/CFS is frequently used (see ME/CFS: A research and clinical conundrum for more information). Of course, none of this alters the fact of the illness for thousands of people, and the lay term ME is still used by patients, patient groups and charities (including ME Research UK) to describe the illness affecting people diagnosed with ME/CFS, including that subgroup of ‘CFS’ patients with an organic biomedical illness, neurological signs and symptoms.

Some key facts about ME/CFS
It is a real, often relapsing, debilitating illness, affecting up to 150,000 people in the UK, with similar rates of incidence in Europe, USA, New Zealand and Australia.

ME is recognised as a neurological illness by the World Health Organisation.

A report to the Chief Medical Officer of England in 2002 stated that ME/CFS “is a genuine illness and imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge.”
Studies have shown that most sufferers are unable to work to full capacity, and that 25% are severely disabled with some house/bed-bound.

Characteristic symptoms include muscle pain with physical and mental exhaustion following normal activities; quite different from what is normally experienced by healthy people.
ME/CFS has a huge impact on the lives of families and carers, but little, if any, support is available to them. ME/CFS also affects children.

The cause is still unknown, and no cure or effective treatment has yet been found.

Hello

So, here it is. This blog has been years in the making. I have hesitated many times over how to go about it. Few first hand accounts of anyone suffering from ME exist and I felt that my experience of the disease offers a unique overview of what life is like for the many thousands of people like me. I also wanted to create a narrative other sufferers can follow and identify with, laugh at, and maybe even draw some comfort from. This blog is for anyone who wants to know what it is like to have ME. I am not a scientist. I am a relatively intelligent 25 year old woman who has achieved much more than any doctor told me I could ever manage, all within the constraints of a disease which has at times left me unable to, embarrassingly for any teenage girl, even go to the toilet on my own. For this reason I feel I have stories to tell and lessons to share. I will try to be as honest as possible - whence why I am choosing to remain anonymous and have given all the people in my life pseudonyms - because I want to be able to offer the real truth of the disease without offending or embarrassing the people in my life. I always worried that a blog about an illness that makes you tired a lot of the time would largely be boring. Who wants to read how sleepy I am? What do I do on days when it hurts too much to type? It's taken me time to realise that in order to tell my story and tell people what life is really like for me then I just have to be honest. Sometimes I may just have to post "too ill to write". Because that is my reality. It doesnt always make for compelling reading (although I promise to strive to make it so), but it does provide the truth of my life and the last decade of how I have managed this beast. Welcome, and enjoy.

I have compiled a Glossary of terms I might use from time to time in the Blog. As well as a rogue's gallery of recurring characters. I also have a Links section of links providing both more information about the illness and also sites fellow ME'rs will find useful that I have mentioned in various postings.

Thank you for reading,

Girlunderduvet