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.