Finding our way

When you share your life open to the world, like I do, you never know what the reaction of other will be, nor what their comments might be. Every time I let a post free, out there into the world, is a little like packing up a child ready to go off to school, then putting them outside your front door and saying goodbye. In some ways, your glad to see them gone, as you have peace and quiet, at last, you also know children will be children and they might let you down, or make you proud at any minute of the day. The noise inside my head may go quiet once published, as the last chance to change or tidy anything is gone, my child is heading off for the day. Just like a real child, I get reports, not once a term, but every few minutes or hours. There they are waiting, a red dot telling me that one of my teachers has something to say. Just like opening a child’s school report, I open it with trepidation, it could say anything what so ever. I could have someone telling me that I am a total idiot, or that I’m a genius. Some even give me a star, as they like it; some give me a silver star; as they are telling their friends on Twitter of Facebook, that they to should stop by my page; other give me a gold star; they do me the honour of not just telling friends, they reblog my work, on their site. Which is all good, but then there are the few who do just the opposite. They tell me just how wrong, or how stupid or petty what I have just written about is. Some are even spiteful and hurtful, luckily, they are few and far between, but they happen. Every red dot sets my heart pounding, so which is it, good or bad, or better they’ve chosen to join me and follow my life work.

I don’t know if I am just lucky, or if I am as good as some say, but they keep reading, so I have to be doing something right. What few or any of them realises, is just what they do for me. How every tiny piece of feedback, gives me hope, gives me purpose and how it helps me live. I know that most read because we have something in common. Our health, our lifestyle or possible as little as our age or the fact we’re both still alive, but we connect and when you’re alone for hours every day, those tiny connections mean the world. Just seeing the visit numbers rising and rising, to know that more and more are stopped by, just to read my words, always means the world. Some say nothing, just read and go, and that’s fine too, because, I know someone I don’t even know, from somewhere in the world, sometimes from somewhere I’ve never heard of, has come to see me. I have been asked a million times if I ever get lonely, how can you be lonely when not a minute of the day or night passes without a visitor, or a tweet reader, responds to something I have said. Lonely is an impossible place for me to be, I simply don’t have the time and that thanks to every single one of you. I didn’t realise when I started to write just what I was doing, what I was opening up, or how much of my life it would take over. When I started writing, I thought it was just a blog, a simple written record of being sick and housebound, not an entirely new lifestyle and life. About a year ago, the penny, at last, dropped. This is my sanity, my way of dealing with everything that my health and life have done to me, but I also knew that it was still more. It’s you lot, my teachers, my friends and family, the ones who praise and chastise, who keep me going with encouragement and smiles. This was never just a blog, it’s a life, in so many different ways.

From the beginning to the current day, I have posed questions. Some just to make you think, others as direct pleas for thoughts and advice, and I haven’t been failed by your responses. Not all have panned out, but they have at least pushed me into looking at things differently, so thank you. It’s also proved to me, that this isn’t just my blog, it’s yours too. If you didn’t visit, if you don’t keep me going, I would have given up long ago with this writing lark, yet now, I can’t imagine my life without it. So many people thank me, especially on Twitter for my constant encouragement and inspiration, well I am now thanking all of you for yours. Don’t ever question what it is that I get out of this, as that is exactly what it is, your support keeps me going, this and Twitter are the ultimate two-way street. I think that too many people have either forget or have become jaded by a cynical world, as so many people do look for an ulterior motive in everything. That is something I find incredibly sad, probably one of the saddest things is the fact, that the younger the person, the more they doubt that anyone can do anything out of love. It has been one of the hardest messages that I have had to get across, the fact that I’m not selling anything, that I don’t want anything, that I am just doing what is right, not just for me, but for others too. I’m proud to say, that it doesn’t matter how horrid life has been at times, I never lost my faith in people. Maybe not the people I was surrounded by, but for people in general. To date, that still hasn’t changed.

Don’t get me wrong, I have had the odd hateful message, the odd comment left by someone who clearly has a problem either with me or with life. In the past, I used to spend time, trying to change what they said, to make them see that I’m harmless and simply loving. For some, they backed down and retracted their claws, for others, all I could do was to block them from my timeline, or delete their messages and tell myself for days to follow, that it wasn’t me, but them. Which if you ever need the proof that we have switched to an online world, well here it is. It took me as long to forget and move on, as it would have done if someone I knew, had reacted in the exact same way to my face. The lines between the real world and the online one have gone, this is now life. Back at the point, I first joined the internet, back in year diddly dot zero or whenever it was, I would have sat and laughed at those sort of messages, something on a computer screen was detached, unimportant and a million miles for reality. Now they are the exact same thing.

Life changes when you have a chronic illness, not something I need to tell anyone, I guess. But that change is nothing, not even a tiny speck in comparison to how it changes when you become housebound and the years start ticking by. You don’t notice that change in the first couple of years, you’re so busy trying to convince yourself that you can live this way, and looking for the way to do it. I don’t think it is until about year three or four, that you truly understand exactly, what it really means, that you haven’t been out for years, and your never going out again. You might think, that it would hit in the first year, it doesn’t. What you feel back then is just anger, betrayal by life and a mix of bravado and determination that you’re going to survive this, whatever it takes. You are so bound up in all those feelings that don’t actually matter, that you forget about the ones that do. I don’t know exactly what drew me into writing. What made me decide that I was going to open up my life to the world, or if I even did. I know for a fact, that I didn’t ever think that I would still be doing so four years on, or that I was going to actually open up my entire life, in all its details. But I guess, it’s not that surprising really that I did, after all, that’s me as a person. I’ve never felt that I had the slightest thing to hide, my life is my life, the past, the present and the future. Being here, being able to write and to find others find my world, probably far more interesting than I do, is a blessing. Without a doubt, I don’t know how my life would be right now if I hadn’t. I doubt, I would be as happy, as together or as fulfilled if I hadn’t. So thank you, blog for being here and thank you if this is your first visit, or if you’ve read from the start, as every single person who has ever read a single word, matters to me.

Please read my blog from 2 years ago today – 11/12/2013 – Take a breath and read

Just like everyone else I hear daily that the medical profession are either making breakthroughs, or need more money to work on a cure for some illness or other, but unlike many…….