What a week!

This has been a momentus week for ME sufferers globally as the FDA published their research linking ME to retroviruses on Monday. This could mean at the best a cure is around the corner and at worst better treatment and understanding is close.

Finally it is also a big kick in the teeth to all out there who still don't believe ME to be anything more than psychosomatic or plain idleness and I hope it shuts them all up once and for all.

As for me? Just tell me where to sign up for drug trials!

Procrastination and friendships - What you can do when you can't DO anything!

Most people crave a few sick days a year, to trawl the internet guilt free, eat bad food, and hide indulgently under the duvet. But when that is your life it becomes a prison. Most restrictive at all is the foggy headedness. This meand you can read books, and sometimes following films is difficult.

I rely on DVD boxsets and trashy tv - and also on procrastination tools like Stumbleupon and facebook . anything that requires minimal brain power, and, when I am really bad, minimal physical effort is a strain. The problem is that it's pretty miserable being isolated from the world and depression is a fatiguing condition, which all multiplies.

Friendships are hard. A good friendship is always going to be something that takes attention, but when you are forced to spend most of your time segregated from the world then it becomes nearly impossible. you cant' 'join in' on the normal casual socialising and it's embarrassing to have to explain to people why you cant do things, why you have to plan things so carefully. In many ways it is easier to have no friends... but that leads to a very lonely life, detrimental to an chance of recovery you might have.

When I first got ill I became a prolific letter writer. Any day I had the energy to put pen to paper, or write a few lines of an email, I did it. I wish sometimes now that I had kept copies of those letters before sending them as they make up an account of my life back then. As social networking and the internet bleeds into every facet of our lives, communication became easier. I hear so much FaceBook-bashing and I understand the arguments and opposition people have to a 'virtual' life but for me it is a lifeline. It allows me to have casual contact with people when I cant see them and keep some sort of relationship going with them.

Ive had a few really close friends over the course of this illness. 3 or 4 who I've told everything to and who have tried their hardest to understand what I am going through. I am grateful to them for their support. They are the exception to the rule of an iron wall of ignorance when it comes to ME, however. I, together with my whole family have lost friends over my illness. Many of my mum's friends couldn't work out why she had to nurse her 'lazy' daughter. understandably, when I started university I was so concerned about how to tell people I was ill. I never like telling people but you soon realise that to have a real friendship with someone you have to tell them - they have to know why you can't do a b and c, and they need to accept it and a good friend will simply value whatever contribution you can make to the friendship. Sadly these people are in the minority and as much as I don't want to have to admit it, I simply can't be friends with the kind of epople who aren't understanding, who don't make allowances for me if I cant do things. That hurts. I don't like asking so much of people, but when you have ME you have no choice.

School was hard. Being an adult with ME is terrifying in lots of ways as I loathe myself for having to take benefits from the government, but it is nothing compared to school. The nature of the beast that is the teenager demands uniformity and conformity - despite professing to the opposite, there is little a teenager can abide less than someone who doesn't follow the prescribed rites of passage.

So I played it cool. I was living at home anyway, so noone questioned why they didn't see me outside lectures. Being a fresher is crazy anyway, and everyone is disorientated (by alcohol and by their new surroundings in equal measures) so little attention is paid to a friendly face who is only a sporadic acquaintance.

This meant I could be a casual participant in these new group friendships without missing out on too much and without too many questions being asked. It was fantastic after the microcosm of school and I felt much more confident as slowly I could explain to my new friends why I was sometimes not able to do things and how sometimes I might only be able to come to something for a little while. I agonised over telling people, fearful of bad reactions and ostracising myself even more than I had to anyway. I have spent so much of my life upstairs in bed. Missing out on the most basic interaction with my family, let alone people outside my family, and the fear of rejection was overwhelming. But I had to accept that I am ill and I can only have friends in my life who accept that, bugger the rest of them.

This has a happy ending. I have been lucky in life. I pour my time into friendships and have been rewarded bountifully. After years of school - of people not understanding and not getting in touch and giving up on me, giving up on my parents because they didnt understand our family situation it is getting easier to maintain friendships now ME is in the public eye a little more.

Career Fears

Everyone worries about the future. about their health, their love life, their family, their security. we worry about getting a job, keeping a job, being happy and fulfilled. we are told retraining is always posible, to reach for the skies. i have been brought up with a british resolve to work until i die on my feet. In my family we are over-achievers to the extreme. there is nothing we are incapable of, and there is no grade other than A's. This is not an outlook that is conducive to coping with ME, but it is one that drives me to fight my disease every day. my biggest fear is not being able to work to sustain myself. forget being able to follow my career dreams and realise my potential, right now if i lost my benefits i would have to live at home and not even be able to work at tesco's to keep myself. it is depressing and crushing. the benefits system is disgustingly anti-ME. income support isn't worth having if you want to try and work part time like i do, and my mother had to go to court to appeal my income support when i was receiving it because the government was trying to stamp down on ME claimers. i received disability living allowance for my rent and a little more and i work part time and, with some help from my parents, i can afford to live away from home (although i have to come home often when i am very ill to have help from my mum and my lovely fiance has to care for me a lot). v lucky to work part time from home. couldnt do another job because my health is too unreliable.

this fear keeps me up at night. the few times ive articulated it, my breath has been hard to catch and my heart beat a little harder against my ribs.

I have been working on my degree for 5 years. i have consistently averaged a 1:1 for all my work and yet i cant finish it... i keep having relapses. i had to leave university and try to finish my degree with the open university, but they have turned out to be grossly unsupportive of disabled students. finishing my degree is my biggest wish right now and i feel like the last 5 years will have been a waste of everything until i have it.

Open University and Disabled Students - Research needed

I have spent 6 years trying to get my degree. At every turn my illness has thwarted my attempts. I am, if not modest, a very high achieving student and my academic capabilities have never been the problem.

I was studying at Cardiff University but after a bad relapse I had to leave and resumed my studies with the Open University. I assumed it would be an institution, because of the kind of study it offers, that was sensitive to the needs of students with disabilities but I have been appalled by what I have found and have now reached an upsetting juncture at which I may have to take legal action against them.

they never sent me the exam for my latin course and failed me for the whole course - they will neither send me an exam now or admit there could be a small chance they were in the wrong. in the most basic sense they are breaking the contract of me buying goods from them and them not delivering the goods as they technically never gave me a way to finish the course. they now wont take my calls. i just want to take the exam and finish the module. it's upsetting me so much and driving me mad. Has anyone else heard of similar experiences and what do you recommend I try next?

Nanny State - i Wish!

It is a tricky subject, benefits. Firstly I am loathe to have to be on them and feel embarrassed, ashamed and guilty. Secondly, the government makes it harder and harder for disabled people to receive their benefits and easier and easier for the jobless to receive theirs.

Many sufferers of ME have been victims to cuts in their benefits this year. My mother had to take my case to an appeals court to battle to keep mine. When she got there, the judge told her the local council should be ashamed of themselves for what they were putting us through and that it was a disgrace how disabled people throughout England and Wales are being made to feel like they have no right to an independent life.

I work part time and have so many aims and goals for a career. I continually try to get closer to these dreams. It has taken me over 6 years to get a degree whilst working part time from home. I would not be able to work was I not able to do my job from bed at home as my job is an internet based role with very flexible working hours. If I didn't have this unique job, no other exists that I could undertake reliably. Some employers are being forced to be more understanding to disabled people's needs and charities like SCOPE are doing great work to spread awareness of how companies can be more diverse and accommodating, but despite this the unpredictability of ME makes working very difficult unless you work for yourself or a very small company. Full time is beyond reach for most patients and part time jobs that are not just casual work can be hard to find.

There is so much to say on this subject. so  much research, so many statistics.

I have to rely on my wonderful mother to help me with my benefits. I am too ill to sort them out myself. Every other month there is some sort of problem with my DLA *Disabled Living Allowance*. I am accused of supplying incorrect information, their calculations are often incorrect, getting council tax exemption is a minefield. It is degrading. I'm not work shy. I'm disabled. Some civil servant decided that claimants suffering from ME were probably all faking it - the clamp down on benefits for ME sufferers has been universally severe and unjust. In the act of taking benefits away from people with ME the government is sending out the message that the illness is not a real medical condition but that we are a group of people who just need a gentle 'nudge' in the right direction.

I live in constant gratitude for the work my Mum does to help me through this disease, but simultaneousy wish  deeply that she didn't have to do it

Cripple!

Last week I went to a gig with my darling fiance, let's call him J. I am shuffling around with the aid of a stick at the moment and needed to find a chair once inside. Obviously these are not ideal gig-going circumstances - especially for a sold out venue as I spent most of the set staring at the back of people's heads as they were thrown around with the great abandon of rock and roll. My problem is that when I book tickets to these things my mind is often a little over enthusiastic about my capabilities.

My fiance, whilst being lovely, has a penchant for causing a sensation by playing to other peoples' prejudices and sense of political correctness. This has caused many an awkward moment when he, being part Indian himself, has probed a little too deeply into others' sense of right and wrong surrounding racial slurs! This means that he relishes, a little too much, the opportunity to do the same when it comes to disability. This gig was a prime and humorous example. When there was a crush to vacate the packed building after the gig, J rushed ahead of me like a human battering ram and jubilantly shouted "Cripple coming through! Make way for the cripple!" Demonically throwing a cheeky smile back towards me as many of our fellow gig-goers scattered and stared,  not knowing whether to obey or argue the orders.

Five years ago I somehow endured a course at university in Cultural Criticism. This was a mulch of critical theory, gender studies, and all things politically correct. It was agony, and I am not sure what drives anyone to teach a room full of 18 year olds a subject that encourages them to talk about 'identity'. Blah! what it did encourage me to do, however, was to consider the post-modern jubilant redefinition of prejudicial slurs for minority groups, and led me to enjoy, childishly, 'shocking' people with my use of terms usually negatively associated with disability.

It is a infantile and perhaps seemingly silly pleasure, but beneath lies a serious issue of semiotics and the cultural meaning assigned to words and the questions of how these meanings and attitudes can, if ever, be changed and challenged.

MEAW - ME Awareness Week

It always creeps up on me and catches me unaware... like water bills and smear tests... and I never learn from my past mistakes. Yes everyone, I have once again forgotten to prepare properly any kind of fund-raising for ME awareness week this year. It takes place from 8-16th May (yes that is next week, and yes I really am that behind in my organisation). I was only reminded of it yesterday and since then have been tweeting and facebooking wildly to let everyone know how to get involved with 'ahem' other people's valiant efforts to fund-raise for this important and overlooked event. The irony of the situation doesn't escape me. I am one such person who overlooks ME awareness week and yet I am someone who should really be behind it, who needs it to be successful, but that is one of the key problems with ME awareness and fund-raising efforts. Sufferers are too tired to get involved, and their families too busy and exhausted caring for them. When we are enjoying better periods, or if we manage to shake the illness permanently, we often don't want to jinx it by getting back into that 'ill' frame of mind and fight, as we should, against prejudice and for research into our disease. Perhaps one of the problems or kinks in the process is that ME isn't fatal. Unlike families battling for cancer research etc we are not fighting to save our lives, just our quality of life. This disease makes our lives a living hell - physically and mentally,  and so perhaps like sufferers of PTSD we want to forget about it all whenever we can. Sadly this can lead to some oversights in how we should be supporting each other and really pushing for further research and medical help.

So, this ME week, belated as it may be, please get involved... if only by educating yourself a little better about the disease.

Alternatively, visit www.ayme.org.uk for fundraising events and links to research campaigns that need your support.

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