Courage for life, Courage for those that are missing from life.

When you have an invisible illness you need to be a lot of things... Courageous, confident, independent, forceful, stubborn. But on the flip side to get the help you need and to accept the help that you need you need to be the opposite. Too Proud, Timid, dependent, flexible and some days you just need to cry.

Most days I need an awful amount of help, from carers, from my family but also I need the strength that I carry from within. I need the ability to sit up straight in my wheelchair and glare down those that give me disgusting looks as I am pushed down the street, I need the fight and the strength deep down to turn my cheek when others, who CLEARLY don't understand about my condition, give negative comments and make me want to give up and give in. I have days when I just can't take the world any more but then I think: For all those people who are trying to tear me down, and there are many, Doctors, Hospital staff along the way, Friends that I have lost or they've just faded out into the background, for everything I have Lost, there are always those their shouting you on. It could be a nice carer that comes in, your parents, a friend who truly understands, It could even be your pet, mines called Pippy and he's a little Jack Russell. But for all those people with you, even if they are miles away, you need to gather the strength and courage to fight the bad and the ugly and grab hold of the greatness.

There isn't much greatness I give you in being seriously ill, but there are a few things I have found that make me smile where others just take it for granted:

• Love – my family, my brothers and sister in law, and my new born Nephew... I take strength from them and their expectations of me, hey, even the love of a good book ;P
• The sunshine- God, the sun on my face is a beautiful thing, the Vitamin D is doing me good I swear. But with the headache its can be a little too much, but even just knowing its outside makes me smile.
• The feeling as you get better- There is nothing that can describe the feeling I get when instead of being paralysed from the waist down with no feeling, I start to get some sort of sensation. I can't describe the excitement and blessings I feel when that happens, because I know I’m on the round back to recovery, even if I stumble and fall and this happens again. Its a start!!
• The feeling when you wake up and you actually feel even a smidge better for it – Those with CFS/ME can appreciate this one. Where you've been in crisis mode for a day/week or month and then you wake up and think Oh My God, today is a good day... better than the previous month combined.
• Comfort – It sounds simple and daft but I swear by it, if I’m comfortable, mostly in what I’m wearing but in an environment as well, then I feel like I can take on the world. If I’m wearing something pretty after a week in pyjamas then my god I am on top of the world.

I want to make a comment about the Guardian's report yesterday by Scott Jordan Harris: http://www.guardian.co.uk/commentisf...?newsfeed=true .

To a lot in our community the loss of Emily made us all stop and really think about what our lives are about and what we are living for. Emily made so much different in her short life, a life that had such promise but was cut cruelly short.

The article asks a basic question: 'How many young people have to die before 'Chronic Fatigue Syndrome' merits properly funded biomedical research?' The journalists writes about how even though she made such a HUGE difference to us and our community, her death went almost unreported. He mentions how she deteriorated and slowly faded away becoming crippled by light, sound and touch. He goes on to say two close friends of his have died due to M.E. and that they 'suffered – and perhaps died – because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession'.

He then finishes with the words:

'Collingridge was a great light for thousands of victims of severe ME whose lives pass in almost total darkness. It is essential that her tragedy is not overlooked. We must all understand that the cause she championed in life – the urgent need for proper recognition of, and research into, ME – is made even more urgent by her death.'...

And that is why I wanted to write today about courage. Because we need the courage to carry on and live for people like Emily, Lynn and Sophia, because they aren't here to do it for themselves any more.

What I’m trying to say with this post is take courage in yourself, Have courage in yourself and your decisions, have pride in yourself, have faith in yourself, but also having the courage to say enough is enough is alright and okay. That yes, we need help and we are not afraid to say it and out loud. And remember just living our lives is Courageous enough, even if we can't do anything else.

From talking to a number of my Foggyfriends I know this will provoke a powerful discussion, that what happens if you don't feel courage? Or what happens if your courage runs out and you are well and truly running on empty? Where do you gather it from then? But all I can really do with this post is to say that there is courage in every decision you make and it is not for others to make judgements one way or another about those decisions no matter how controversial they might be! It is a personal thing and only something that we, the ones facing day after day of exhaustion, pain, loneliness, despair, memory loss, 'brain fog' and any number of those horrid repercussions that we face having these illnesses and diseases can have any real opinion on.

Thanks again for reading, feel free to leave a comment, send me an email or pass it on to others because I have the strength to see this through to the finale. And that is getting people aware that we are out here and that between us we can take them on.

24 Hours past the Post

 This past 24 hours have been a roller coaster ride of emotions for me. I'm having a crisis day, Post Exertion Malaise, if you want to get formal. I blame it on Physio yesterday if I’m honest. But as I wrote in my first post I try and work through these things because I need to. I've kept myself in bed, I’ve only got up once to use the Loo, and even then I was pushed in my wheelchair by my carer, but like the huge amount of exhaustion I feel, my emotions have been everywhere.

Yesterday I was on a high, I posted my first ever blog post and people Actually Wanted To Read It!!! People were interested, people were sharing the address around and I got excited, that maybe this is what I am meant to do in life? I was put on this earth, not just for myself, but to fight for others as well. And that was the reaction I’ve got from the people who have taken the time to read the extremely long post. In the end I think it came down to 2611 words. Which is the equivalent to one of my University essays sometimes. But I was so impassioned by the need to write that it flowed and I was able, even though I am suffering for it now, to get it done and out to a few friends in about an hour and a half.

How this started was that one of my friends on foggyfriends.org (my CFS/ME support system) thought I should get it printed, but we soon realised the possibility of that happening was zero to none, so the next idea that cropped up was a blog. We didn't know what was going to happen or really know what we were doing, myself especially, but having read my words my friends KNEW that it needed to be seen by people like ourselves. That there was someone out there that was willing to fight for them, and with them side by side. Even if I only reach a few people. A few people who read my last post, or this post or a future post and it gets them thinking!

Those few people, have read the words I wrote in desperation, that having actually read back to my mother part by part I can do nothing but cry as I read. The words are so heart felt, that my heart breaks knowing that I’ve had to get them out there so that people in some small way understand what I, and others, go through daily.

We wake up exhausted, the analogy goes that on a good day we've ran a marathon, been beaten up and got the flu all at once... at least I think that's how it goes, or at least that what it feels like to me. Then we try to get out of bed, the aches and pain, usually stop us in our tracks for a while, we need to take a breather just to sit up in bed. The next thing is standing up, well in my case that is just not going to happen, I shuffle into wheelchair with my carers help and she takes me through to the bathroom. She helps me get undressed, she gets me on to my shower chair and after putting on her apron and gloves begins to shampoo and condition my hair as clinically as a carer whose become a friend can.

Remember this is a GOOD day!

She then asks whether I want to shave my legs today? “Do you think you can do it yourself today, or are you going to need some help”, to which my reply always is, “I’ll give it a go”, so I try and I fail, because bending up and down, even whilst sitting, is too much. She'll finish it off and then give me a wash down with a flannel and some nice smelling body wash... I like to get the strong smelling ones, because if I have a bad day tomorrow I can sometimes still smell it on my skin and so a baby wipes wash still makes me smile. We then somehow get me back into my wheelchair and roll back across the hall to my mothers living room where my bed is. I towel off as much as I can and then she takes over the rest. We get me onto the bed, and we start the shuffle.

I've found that leggings are a godsend, cami tops are a staple and big fluffy cardigans are a wonder to behold, but I still need help getting these easy clothes on. And my carer does it without complaint. Knickers and Leggings go on at the same time to conserve energy, bra and top go next and sock are last. She cleans between my toes to make sure they are dry and then puts my socks on one at a time. And I lay back on the bed, where I will remain unless I need to be anywhere urgently; Doctors, Physio, Toilet... in that order... maybe if I’m having a BRILLIANT day my mum will take me to a nearby town and we'll look around the shops but I’ve found that falling asleep in Primarks is not acceptable public behaviour, neither I falling asleep in Waterstones, or at the table in a café. But remember this is a GOOD day!!

My carer makes sure my water bottle is topped up and then goes. And its just me in my house on my own with my little dog. And we sleep, or if my foggy brain will allow and my memory is playing fair I’ll start, continue or finish my university work. I might even have a conversation with my carer when she comes back to give me lunch, but remember talking takes energy, physical, mental and emotional energy drains me. BUT, this is a good day, so I have a chat and maybe go on foggyfriends and have a look in their chat room, or have a complain about how I’m feeling or just talk about how I’m getting on with my work. My carer usually leaves me 4 Jacobs crackers and a dairylea triangle as a snack, because my stomach can't take much and to be honest, this I'll probably leave and have for tea/supper/dinner later on whilst my mum and brother have whatever they want or have cooked.

But I’m having a good day but I’m exhausted now, I’ve probably done too much, even just laid here in my bed surfing the internet or doing some essay work, its probably been too much. But I remind myself, I've had a GOOD day. Tomorrow could be different, so I try and make the most of today, but this is a bad thing. It leads me down the Boom and Bust path way. I shouldn't do so much on a good day that I get Post exertion malaise the next or following days. I should only do 10% more on a good day, than I do on a bad day.... that 's the rule apparently.

So its the end of the day, I’m getting more and more tired, so tired I could do with my carer coming back to help me get undressed, to the loo and into my pyjamas. But she can only come in for Breakfast and Lunch, that's all I have funding for at the moment. So my mum after working a full day as a carer has to come home and care for me here as well. As it is with a lot of families with a condition like mine, someone needs to go out an work to support the family, but then when the carers aren't there they also then have to, on top of a full work day, come home and look after their loved ones as well. My mum comes in, takes one look at me and asks the question “do you need help?” and I have to degrade myself in a way to say yes, because I am a 21 year old woman, and I feel like I should be in a nursing home, because I can hardly do anything for myself... BUT this is a GOOD day!!!

But this is where relationships can become broken and bitter, its not a relationship of equals any more, no give and take, just take take take. But we try and make it up on our good days. We try and get them a cup of tea made or give them a hug if we can lift our arms up or show in some way how much we appreciate their help and support, but if your Family or Partner, Husband, Wife, Mother, Father, sometimes your Child, don't fully understand your condition either, that’s when break downs start to happen. That's when relationships of all kinds become fraught and tense and sometimes they break. Its unfortunate, but sometimes its the only thing that can happen but they didn't sign up for this in all probability. We were just lucky to know them for a while until it got too much. But we still love them, and we understand, we can't fault them and that’s what makes these things all the more harder especially if its a Husband and Wife, Boyfriend or Girlfriend, we want to get angry but we can't because we understand why they had to walk away. It just got too much for either of us to handle, and in the end we don't want them getting ill either. Stress, getting run down and just the sheer amount of work they have to put into their own lives and to help us must be immense. Actually no not 'must be' it IS immense.

Some are lucky and have wonderful partners who are completely devoted to one another and I have one couple in mind when I say this. They make it work where so many of us fail. I'm in no WAY saying that we can't have relationships that are successful, they are just harder to maintain. Its not an easy potted plant, its a whole flipping rose garden that needs tending too. And some are great at it.

So, my day has ended, mother reminds me to take my medication, I take it, and then I pop in my headphones with some soothing music and try to sleep as best I can because I don't know what tomorrows going to bring. I can give a good guess, but you can never tell until you try to open your eyes and its either easy or hard... then you start to get the feeling of what type of day its going to be, and the cycle starts again.

My social worker, I have a shiny new one now, wants me to be able to live independently. Wants me to be able to go out into the world with confidence as a 21 year old should. I should be able to go shopping if I want to, or sit in a bookshop and sneakily read the books, or go to the cinema – I’m not a drinker so I stay clear of the pubs now, although I did find a pub turned cocktail bar that makes an amazing non alcoholic cocktail but that’s for another time. I should be able to do those things and we are working towards them, but now I get political again.

BUDGETS ARE GETTING CUT!!

I'm not able to get a job at the moment so that poses the question of how am I going to live independently with no funds. The government. They tell me to start bidding on houses on the Housing association websites but with what to pay for it should I get one? Like I said in my previous post I don't get Disability Living Allowance, I can't get any sort of employment support allowance because I’m a university student and its too late in the year to apply for Disabled Students Allowance... So the question many of use ask is how do we do it?

We have to fight to get up in the morning to ring one office or another to make one claim or another and then we get rejected. Because Chronic Fatigue is not deemed seriously enough. Conversion Disorder/ Functional Neurological Disorder is hardly even heard of.... so we need doctors support. But what happens if our doctors aren't supportive? They won't write a letter of support (that we'll have to end up paying for somehow)? What then?

And that is where I am now. Where most of us are now. No steady income, bills stacking up, worrying and stressing about things we have no control over, that drains our precious energies away but that need doing.

So what are we supposed to do, if our government won't help us? Long term? Short term? Where are and what are the answers??

The Last thing I want to say is THANK YOU, to all those that took the time to read my post yesterday. At the time of me writing this I have had 82 reads, 76 for the United Kingdom, 2 from Sweden, 2 from the United States, 1 from Germany and 1 from Canada. I thank all those people that took the time to read my post, and hopefully some of you took away something from it that can enrich both your lives and those surrounding you, whether you know it or not.

Please keep passing on the blog address, or tell someone you've read it or something to get the word out, because no matter how fantastic the few are, and the big difference they make. It is the masses that make the most difference.

Politics, the NHS, Disability and Disillusionment

I consider myself 'Political', for goodness sake I am finishing my Politics degree at Aberystwyth University, but inside I am conflicted. I believe in politics, I have read John Locke's 'An Essay Concerning Human Understanding', I have read Thomas Hobbes' 'Leviathan' and I have read Jean-Jacques Rousseau's 'The Social Contract', so I can understand the concept of why we have a government and that within our human nature we have had to bind ourselves together and to give over part of our human natural state, to the governing system within our country, for the betterment of all of us.

Let me make something clear, I am not a raving Liberalist, I'm not hiding out in the mountains building a militia, I don't want independence for counties and I don't like the federal system within the United States. For all intents and purposes, I started my political life at 18, when I first voted Conservative. And it’s from there that I have tried to somehow come to terms with the choices I have made, the values and morals that I hold for myself and the reactions and consequences of my votes.

I was happily oblivious to politics and life until I went and moved to a different town's Sixth Form College. And suddenly I was thrust into the middle of a political rite of passage. I chose to study English Literature, Classical Civilisations, Government and Politics, History, I.T and General studies although after your first year you're encouraged to drop three. So I kept English Lit, Classical Civ and Politics, and this is really where I became aware of the world around me. I remember the American Presidential elections, and we were following it as a class project, right from the campaigns beginning in 2007 until his inauguration in 2009. We all sat up that night and watched an African American man become the first Black President...and he was chosen as the Democrat candidate over a Woman... it was amazing.

So turning 18 and making the conscious choice to vote conservative on a more moral stand point, the old conservative values of 'Marriage, Children and Church' but I also believed that everyone should work towards their own goals, should be able to own their own homes, I was naïve. I knew of course that there were those that were on 'benefits', that 'social housing', 'council houses' existed so I knew that there were people less fortunate than myself, but I still believed that by giving my vote, my part of 'the social contract' so to speak, that the country would move forward and progress.

However this is where the second part of my title becomes apparent. In 2006-2007, I started to become ill. Desperately ill, I thought I was going to die. I didn't have cancer, I didn't have any sort of disease, my doctors didn't even believe me when I came to them crying for help with my mother there begging beside me for them to do something. It started with tremors, in my hands, my legs, my neck, my feet and my toes and fingers, these progressed to what I now know were called Myoclonic Jerks or mini seizures to the non medical professionals. I then progressed to full blown seizures, and from these seizures I would get side effects: loss of speech, loss of swallowing reflex, paralysis in my left arm and full paralysis from the waist/hips down.... I spent 6 weeks in hospital and this finally had happened after over a year and a half in which I had been poked and prodded by the country’s numerous Neurologists, in which I was mistakenly told that I had Progressive Myoclonic Epilepsy, and separately told that I could have months to live... I thought I was going to die.

But to the background of this, to keep myself sane and thinking and participating I carried on with my A-Levels... Through the many hospitals and beds I carried on, I was determined to finish my A-levels even if it meant repeating my second year. But at the end of those six weeks I was taken to a hospital in Birmingham to see a 'Specialists Specialist' I was told with a smile. And he gave me the verdict, the final diagnosis, the weight hanging over my head was either going to drop, or lift and this man who sat in front of me, surrounded by his registrars, all looking at me with fascination, had the answer, the final say. I had what is called Conversion Disorder, now renamed as Functional Neurological Disorder.... and I wasn't going to die.

But don't get excited, this is where my journey really begins. Supported by my childhood, the love of my mother and sporadically the occasional madness from my father and his third wife (crazy, slightly obsessive, academic, lovely but annoying sometimes bless her – thank goodness she's the one who has stuck it out), supported by the knowledge that justice will prevail damnit, that I would get better and live a normal and healthy life, I was actually told that this would stay with me forever. I was told that periodically I would have relapses, that I would have these seizures, I would need to be hospitalised with specialist Speech and Language therapy, that each and every time it might take a little longer to learn how to walk again depending on the severity of my seizure. I was told this and then I was told that was the end of my appointment, with this man who had just given me this news, the weight still hovering dangerously over my head. But now I had the knowledge that people would never understand or look at me in the same way again.

Conversion Disorder/ Functional Neurological Disorder is classified by Kings College London's Institute of Psychiatry (research paid for by the Medical Research Council) as 'neurological symptoms (most commonly seizures or ‘stroke-like’ symptoms) that are presumed to be of psychological, rather than neurological or ‘organic origin' and, believe me, that is one of the nicest definitions. I was to a lot of people now 'mental' or a 'head case'. It used to be called 'Hysteria' and anyone who has recently seen the movie 'A Dangerous Method' will understand the notion of 'Hysteria', a woman becomes frustrated, whether it be sexually or emotionally and they 'act out' these frustrations through physical symptoms. I have been called a faker, I've been spat at, called horrid names, I've had doctors turn and look at me when they see 'Conversion Disorder' on their screen and look at me completely differently as if everything about me is made up. As if my paralysis isn't real, or this chest infection I’ve developed could all be just 'in my head'. Functional Neurological Disorder as it’s been named – to get away from the Hysterical connotations I presume – is an invisible disability. I call it invisible because no-one can see it and once I'm over the year it took the first time to start walking again, then I am back to being one of you, one of the normal people.

But this time it's different, my doctors have become used to the diagnosis, they have put strategies in place to care for the needs I have when I have these 'episodes' or 'crises'. But again, this time it’s different, I've skipped over three years, I'm eight weeks away from giving in my final piece of work for my degree, I'm so close to graduation I can taste it. But suddenly I'm the disabled girl again. Stress over bullying, a miscarriage (yes the pregnancy was planned), and generally getting unwell has brought on my FND full force and I am laid in my bed, back in sunny and beautiful Shropshire, away from university, paralysed.

I was in hospital this time for two weeks, 12 days officially, but this time I had to have a nasal-gastric tube placed down my throat because my swallowing reflex wouldn't come back on its own. I'm at home, I have to have a carer and she's become near enough my best friend in the world. She's seen me at my lowest, she's seen me sobbing in the shower because I don’t have the energy to wash and condition my hair AND shave my legs or most of the time, do either. She has seen my struggle to get my clothes on and had to intervene before I hurt myself in the process and she's had to make every meal I've eaten in the past 2 weeks, because I don't have the energy to do it myself.

This isn't normal for my FND, this is new... 'this' the doctors are starting to suspect is Chronic Fatigue Syndrome, or more commonly known as 'M.E'... and people again don't recover fully from this new disease.

The reason I am pouring my heart and soul into this long and arduous article is to highlight a number of things. The Healthcare in the country is shocking to someone with an 'Invisible Disability', THE PEOPLE OF THIS COUNTRY are shocking and many times abusive to those with an 'Invisible Disability', there is little support other than counselling, as if somehow talking about my feelings is going to get me jumping from my 4 year old NHS wheelchair and scream 'I'm CURED', for some people it might work, for others, like myself, it didn't, it only made things worse.

The second reason I am writing this, fully expecting to not have anyone actually see it, read it, let alone print it, is that I had this feeling of promise deep in my heart for politics – my student debt should attest to that- that voting made a difference, that supporting a party would allow our constituencies to gain support of the government should things get bad and that things would change. But only over the last few days, weeks and months the government is rolling out more new changes to the benefits system for those that are disabled and cannot work. We are being asked to undergo 'fitness for work' tests, the guidelines for getting Disability Living Allowance are being restricted, with those of societies most vulnerable being left behind under the headlines of cost cutting. I applied at the very beginning of February, it is now the end of March, my doctors are dragging their feet sending off the medical evidence and even then with the new guidelines I may not even be awarded anything. I am Paralysed, yes that seems like an unfair statement to someone who is permanently so, but given that I could be in the condition for over a year plus, I kind of think some return on my National Insurance contributions that I have been giving and will be giving in the future is not something that is a hardship considering that I will in all probability give more back than I take out of the government's kitty. David Cameron is who I voted for, his son was disabled and I know I need to tread carefully, but he claimed DLA for himself and his child to make things better for the little guy whilst he could, but I'm starting to wonder where the compassion has gone now?

I am living in my Mothers living room, I have £14.89 to last me till April 23^rd, when because even though I am at home I am still doing my degree, I will at least get my last ever student loan instalment. Being disabled is expensive. Special considerations are needed, taxis as a basic – if you can find one that will take a wheelchair that is. What about rent going un-paid at your student accommodation because it’s not wheelchair friendly? What about picking up the paper on an almost daily basis, to see the words 'BENEFITS CHEATS' and wondering whether someone thinks you are too, what about the buses that drive past you so they don't have to stop and help you get on, that would lose them time? What about the Thousands of people like me, with varying degrees of 'invisible' and 'visable' disabilities who have no support from family as I luckily do, even though things are extremely tight? What about you pushing yourself down the round and having scathing looks thrown at you when the aisles between clothes in shops are cluttered or too small for a wheelchair to pass and you have to ask for help, and a nose is turned up at you?

So to come back to the basis of my article, I have lost faith in the government to a degree that they aren't willing to protect me in my vulnerable state any further than making sure someone cleans me up and feeds me when I'm able to eat. I have lost faith in the NHS, that they are capable of treating me with any sort of decency or respect for no other reason than because my body likes to take its emotions out on itself, I have lost faith that I will be able to gain employment because I am disabled, that I will cost companies money to employ instead of making them money.

But what I do have is faith in myself, that I am a fighter. This may not be a well organised article/letter/whine however you may want to put it, but I will fight for everything I deserve, I will fight to work, to live and to be able to support myself, even if I have to fight for the support to do so along the way. Because like many with an invisible illness or disability, we don't want to be ill, we don't want our relationships to break and shatter because they have been put under only the strain that a disability can put on a relationship, we want to have families, we want, if our bodies allow us, to get a job and earn money and for the first time in a long time feel respect for ourselves. We are just like everyone else, but unlike everyone else, we are overlooked at interviews, overlooked by the government who believe that things are not that bad out there, we are overlooked by the majority of medical professionals who believe that we should stop using the internet to create ourselves more problems.

So here I am, laid out in bed, typing with all the energy I have left, something I know will probably never be seen. But for myself and my family, for my friends with and without disabilities, for those with Conversion Disorder and those with M.E. I thought I owe it to us all that I write what we are all thinking. That we have been let down by the people and the government we have given a bit of our freedom too.

So thank you for reading, and I hope you take away even a small grain of sympathy or feeling of injustice for those of us in an impossible position, maybe open a door for someone looking tired or exhausted one day, because maybe they have Chronic Fatigue/ M.E. Maybe you could move a chair or a table in a restaurant without making a huge deal so that a wheelchair can get past without the one in it feeling like a freak show. Maybe you could write to your local M.P. To ask them what they are doing on the behalf of those that are vulnerable and disabled in your area, maybe you can grow a social conscience?

Or maybe just do something for someone else because it is the kind thing to do?