It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.
When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.
Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.
I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.
Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.