I don’t know who you are but good morning to the six people reading my blog at this very second, 10:49 am 31/05/14. I really love that little globe at the top of my blog page, it has this strange effect of changing my mood, just by looking at it. There are days like today when I pop in to pick up the details for the link at the bottom of each post, to the post from 2 years ago and I am greeted by flags around the world, flags belonging to people who are connected to me, right at that second. Just knowing that at that second all of those people are reading, well it makes me feel proud of what I do. Then there are days when I am alone, no one there but me, but I can see thousands of dots, dots belonging to people who have been to my page, turning countries greener and greener as time goes on. Sometimes I enlarge it and I try to work out just which town, city or village the dots belong to and what sort of person it is from there, that was drawn to read and why. Either way it gives me a boost most mornings, telling me that I am totally not alone, all around the world and from places I never imagined there are people, real people who by just clicking in and reading have touched my life, as much as I have theirs.
Almost every day I see and speak to no one other than Adam, well I’ll correct that just slightly, I answer the intercom every day to the postman, one of the drawbacks when someone works out you are always at home, so my world has shifted to a major degree to online. I think if you were to go back to the start of my blog it wouldn’t be that many posts in that I first make the suggestion that everyone who is housebound should be given and taught how to use a PC, tablet or smartphone, whichever suits best. I know from my own life that this window onto the world has become the most important escape and way too still be part of the world, so when I heard someone on the morning breakfast news, saying the same thing as though it was their personal and stunningly new suggestion, made me laugh. I make no claim to it being my idea either, as I am sure millions of others have also come to the same conclusion, that it would help to end loneliness and give most a new lease of life, plus also saving the NHS a fortune. Why I am mentioning it here though isn’t just because so called experts with NEW big ideas, need to be taken with a pinch of salt, but because there was, of course, the so-called other experts who tried to argue that it wasn’t enough on its own and that people can’t possibly live a full and content life just online.
The longer I am housebound and the more I have learned just what works for me, the more I find myself in total disagreement with so called experts, as they simply don’t know what they are talking about. They can have as many degrees as they like, unless they have either lived like this, or they have taken time, to do proper research, not loaded questions in favour of their views, they can’t possibly understand the first thing about any life other than their own. On several occasions in the past I have come across questionnaires which have being put together to collate information about living with MS or other chronic illnesses, the problem with every single one of them, is they only allow yes or no answers, to questions that have clearly been put together by people who aren’t ill, they are the things that a fit and healthy person might think would be important to a disabled person.
From the start, I wanted to write to give the true picture of life once housebound, as, despite many long searches, I could find nothing online to help someone like me. My goal hasn’t changed, but strangely the longer I am writing and the more I read or see on TV, the worse the situation seems to have become. I started this morning by saying the effect that one silly little widget with a spinning globe can make to the mood of one person, imagine just how many others could get that sort of life daily, it doesn’t take having expensive carers or companions, it is the small things in life that make the biggest difference. I know the world is very different now, but 20 years ago I would have been writing a list of hugely expensive things, things that I would have thought were essential to live a good life, now I doubt if one of them, would I even think of listing. I know I am lucky to have Adam, he is my real world and when he is not here, well the virtual world does me just fine.
I just wish that right now there were a group of people all working together, to work on finding those small things that make people happy and how to put them together with the people who need them. Yes, they could put together a site that would be a community access point for all those who need a simple route into the online world. It would need to be incredibly simple to access and navigate, not filled with annoying flashing things, or pop-up ads with fiddly small “x’s” that you can’t click due to bad dexterity. Everything designed for the elderly and the disabled to use, not bright spark kids who know everything. Most of all, though, whoever it was doing the work, well the first and most important thing, to talk to the people who need it, not just doing what they think is right. All to often I just feel that I am being told what is best for me, what I should need and what I should have, even when they are my idea of hell. We are not all the same, some people will long to go to a community centre and sing songs, but some will be just like me, but just don’t know how to do what I do, because no one has taken the time to teach them to use a PC. I find it hard to believe that the world has changed so much in the past 20 years, but they still expect the disabled and elderly to need just what they had back then.
Please read my blog from 2 years ago today – 31/05/12 – Help for others
My health has always been wonderfully iffy, to put it mildly, before my diagnosis I read and read, trying to find out what was wrong, there were so many illnesses that it could have been, that I found I had every illness I had heard of and many I hadn’t, clearly that wasn’t the case, but I was aware that MS is far from the only illness that causes not just cognitive problems, but other brain damage as well, so when the other day I was asked by a friend on Twitter to tag some of my posts……