Sometime when I have finished writing my blogs and setting up all my tweets on the scheduler I wait until the notification of my most recent blog to go out and then I go onto the post page and I watch the spinning globe on the left of my screen. Suddenly the small flags appear, some where there are already green point of previous visitors and sometimes new dots appear. It never ceases to amaze me how people all round the world click on my Tweets and then appear on my page to read my words, my words not some great and well awarded writers, who has had number one novels translated in to hundreds of languages, they are here to read my word. It is such a compliment to know others want to hear what I have to say, but it is also incredibly worrying. There should be no one out there that need to read and know what my MS is like and what my world has become because of a chronic illness. There should be so much information available to each and everyone of us, that one new voice in the mix is just a small whisper.
I started writing partly for myself as I wanted a record and partly because I felt I had a different view point to all the other information I had read, it never occurred in my thoughts when I wrote my first post that I wasn’t the only one who wanted the truth, not the medical or well meaning carers idea of what a chronically ill person should be told. I came to the conclusion I was odd in wanting the truth, that I again in this huge world was a small lonesome dot who didn’t fit in. Well what else could I think, I had searched and I had tried the standard routes and I didn’t find what I needed.
When I was newly diagnosed I went along to an charity organisation here in Glasgow, I thought that they might be able to fill in the gaps, I thought that I would be able to talk to others who would give me practical advise and some support. Adam and I went to a series of meetings, meetings which made me think of AA. They set us all in one big circle and they didn’t talk, they moaned. Each and everyone one of them had the attitude that it was now the responsibility or the Government to do everything for them, pay for everything they needed and a that their MS was worse than anyone elses.
Each meeting we went to, no matter how hard we tried to get the answers to the questions we went there with, we left knowing loads about their housing issues and how ill they were, what benefits we could try and get and how to fill in the forms to make receiving the money more likely. Much of the information was another echo of what I had found on line, what we all have probably found on line. The big questions, the ones that have probably brought you here, where never even touched on, when we asked they gave no answers. In there way they meant well, but the result was a pile of cotton wool, puffed up and suffocating in it’s niceness.
Adam was the first to question vocally why we were going, I was so please he said it, as I felt it, but had kept my mouth shut as I felt that maybe he needed the support of other carers. To me nearly all of them had given up, they appeared to have no ambition to find a way through it all, or to understand what their future would be, or how to continue living. It may be very wrong of me to say this, but I got the feeling that they had just given up, they were resigned to a future sat in a corner.
Every new dot on the globe I now realise are other just like me, others who want to know what happens when you have a life of pain and how you find happiness, within all of it. I am no longer a alone in my belief’s and if any of you ever feel alone, look at that globe as each and every dot is very much with you. Each and every dot is a another you or me.