Making a differenece

I must have suddenly hit that age, or there really are a lot of desperate people in need of money or wanting to come to the UK. In the last few weeks, I have been hit by so many men on Twitter declaring their undying love, on their first or second tweet to me, that it has quite simply become funny. I guess they look at my picture and read my bio and think here is a target, someone perfect for scamming. I have had the odd one or two in the past, but the numbers have just shot up recently. Yesterday, I think I actually hurt one by accident. He wasn’t like the rest, he had at least taken the time to send me about 15 tweets a day for over two weeks, all in response to one of my tweets. In fact, adding him in as one, I think might be a little harsh as I wasn’t even sure if he was male or female until yesterday. No, I wasn’t being thick, but a foreign name and no avatar make it very hard to work out at times. Last week I started to wonder if my friend was looking for something else, but I couldn’t be sure. Then yesterday, I answered a tweet from him and in it I mentioned Adam, I suddenly received an apology for being friendly with me and promise not to bother me again. He had said one thing I took with a pinch of salt last week, that he was planning to come and see me, and that turned out to be what he was apologising for. People say all kinds of things, something like that felt very unlikely to ever get any closer than just those words, so I had ignored it. In fact, I had totally forgotten it had even been said. Now I feel guilty for just being friendly with someone on the other side of the world. Social media has created this mad world where what we do and say, isn’t like anything we would ever do in real life. A couple of generations ago, you wouldn’t have spoken to anyone without a social introduction, now we not only do we talk, but say the most outrageous things and even personal things, without a second thought.

I have frequently said that if there was one quick and economical way of helping people who are disabled, have a chronic illness, or mental issues and the elderly, is to put them online. What it would cost a health authority is minimal by the saving they would gain from the less frequent visits to doctors and hospitals. Social media is a gift still waiting to be tapped into by those who would gain the most. Loneliness is a killer, and I for one don’t think I would be dealing with my health so well if it wasn’t for everyone that I have met here online. Well almost everyone, there are a few that I could have managed to get on perfectly well without, but the good ones, they out number them with ease. I can say with surety that the majority of issues I have had online have been brought about because of my high number of followers and people that I follow. The numbers alone bring in a degree of nutters, a number of scammers and some, well some that shouldn’t be online at all. I can say that with surety as I didn’t even notice them until my profile level was up over hundred thousand followers, then they all started to appear in droves. To the average user, this place is a godsend and should be utilised for it’s benefits.

When you live with a memory like a sieve, trying to hold multiple conversations with people all over the place is hard. I do try to remember all their personal stories and their reason for being there online, but it’s hard. Just as I am useless with names and faces, I am useless with small chat details, especially when people vanish for weeks and then suddenly reappear as though we were chatting yesterday. It is a difficult world to keep hold of, even more so when they suddenly change their avatar, which was at least a clue to me as to who they are. Trying to remember of a hundred thousand individual and very different followers, is impossible, yet some seem to expect me too. I love my online life and all the people it has brought into my circle of reach, but I can see that it is going to get harder and harder as time goes on, to just make sense of it all. One of the reasons I gave up on Facebook was because people had different names and avatars from twitter, but they expected me to keep track of it all. I couldn’t and it made life harder than I could deal with. Don’t worry, no I don’t intend to give up on Twitter, but please be reasonable when dealing with a sieve and accept a simple fact, you or part of you, might have fallen through one of those holes, not intentionally, but because it just happens.

To date I haven’t tried to use Adams smartphone or even a tablet, I am still content to be sat here with my beloved desktop computer. I have though thought about making a change, not yet, but in the future. With my legs slowly going, I can see the day will come when I can’t clamber out of my chair and make my way to the otherwise inaccessible office space. It appears to me that technology may have actually come up with a new form of computer conveniently at a point in my life that I may need it. I have to say I was totally against them at first. Clearly I wasn’t the only person who looked at them and spotted a problem, everything about them was too small. I have noticed that they are slowly getting bigger, which might just mean that my overactive fingers tips might be able to actually to touch just the thing I want, not ten others at the same time. The only thing that worries me is that I can’t actually go anywhere to test run any of them. It will be a case of pot luck if I choose well or not. The internet may be here for me, but finding the correct access point to match my health needs, is far harder to get. Although I now have little doubt that it is out there somewhere.

In some ways, one of the beauties of being online for many I am sure is the fact that they can be totally anonymous, especially if they have a disability. Suddenly, online all of that can vanish and they are just part of the community. No one has to say anything about their health unless they want to, I can see why some find it a wonderful freedom. I chose to be upfront and totally open about everything and I know that is what draws many to me. They know that what I say is true and that I at least believe every word to be accurate. But that actually puts a pressure on me that I never expected and it was worse on Facebook than anywhere else, people ask me for advice. I have frequently been stunned by the some of the help that I have been asked for, as though I am an agony aunt and one with a knowledge of every single thing in the world. I have lost count of the number of times that the words “I know you will tell me the truth” has been in a tweet and 99% have nothing to do with health. I guess all of us find ourselves in places we don’t expect to be, but this one really bemuses me, as I am just an average person who has spent the last 8 years indoors. What do I know about the outside world? Nothing, any longer.

Although I can understand why some might want my help, for the life of me I can’t understand the next oddity that being online has brought me. Of all the things I expected that being a high profile person online would bring my way, not once did I expect to find myself almost daily sitting looking at a single part of the male anatomy. I’m sorry, but I just don’t get it? Why do some men think this is the way to get attention positive attention from a woman, disabled or not? All it gets from me is a quick report to Twitter, followed by being blocked. After just over 3 years on Twitter I have in the last 18 months been bombarded by tweets and follows of this nature and trust me, it’s not what you want to see while sitting eating your breakfast. Equally, neither do I want to be staring at the female equivalent. I have over the years heard on the TV that there is a huge issue with porn online. I can confirm that and add that you don’t have to go looking for it, it presents itself over and over again. Yesterday alone I blocked 15 Twitter accounts.

I don’t think that I could be happy if I didn’t blog and tweet. It is now so much part of my life that being without it for even a day would leave me at a total loss. I have completely replaced what the outside world gave to my life, but being here. I doubt that when the world of social media appeared that anyone who was writing the programmes even once thought about the housebound and disabled. I doubt that we were even a flicker in a dark corner of their minds, but this has been as of much of a positive impact on my health as my meds are. I once feared that being housebound would bring an end to my working life. It wasn’t I just moved it all online. When redundancy and not being able to find a single company interested in employing me, despite thousands of emails and applications all done online, I joined the world of social media. Computers have been in my life for the past 19 years, in ways I never once expected or thought possible and I can see them now being with me to my final days. I don’t normally envy people at all, but I do envy the generation now growing up, as they have the power of the world at their fingertips. Throughout their lives, they will naturally live within two world, connected in ways that we can only now imagine. Should one land up like me housebound, I doubt their lives will skip a heart beat, their lives will just naturally go on. I know I am lucky, I am the first generation still heading into this bright new world where acceptance is automatic and apart from those with a desire to show off their most unattractive attributes, I love every single one of you and thank you all for letting me into your lives.

Please read my blog from 2 year ago – 20/09/2013 – Reaching the world

Another day another post and what happened to the rest of this week, how on earth did it get to be Friday? It has been one of those weeks when I have slept so much that I actually feel as though someone has stolen a couple of days from me at the very least. I don’t suppose it really matters but…

Working together

I received through the post my appointment details for the dental hospital next month, when I opened it I was a little confused at first why there should be anything more than just the letter, but there was clearly more than one sheet of paper. Once I actually managed to separate the pages, something that with poor dexterity is just getting silly as time goes on, I found that there were, in fact, three sheets, the appointment letter, and a two-page questionnaire. I found my reading glasses and started to go through the questions to see what information they were looking for, but I wasn’t much further past name and date of birth when I noticed the size of the boxes that they expected me to be writing my answers into. Poor dexterity doesn’t just mean problems with picking things up, it also includes writing, one of the reasons I so love my PC, I don’t though have a printer, so I can’t just transfer the details onto here and complete it and print. It wasn’t only my writing that I was by then guessing would be the much-expected questions, as I went down the form past requested details of if I have heart problems and on, I found what I expected, “Are you receiving any tablet, creams and ointment from your doctor?”, with a box only big enough for me to write about half of the name of just one of them. Then the question asking me to list all the conditions I have and finally the dates and reasons for my being admitted to hospital with the word “ever” highlighted. I guess I am about to write a novel and it won’t be on their form either. I can only guess that they don’t have access to the medical records that the NHS have just spent a fortune putting online here in Glasgow, but on top of that, they haven’t put any thought into producing the form, I doubt most people once past the age of 50, especially women who if they have children could well have been in and out of hospital for loads of reason, could possibly put the details they are asking for on that form, even if they could write as thought they were mouse-sized.

Throughout my life I have had a real hatred of forms like this one, it used to be forms that asked for every address I have ever lived at, were my pet hate, I had 9 before I was 16 and apart from 2 I couldn’t tell you the address of any of them. Just sitting thinking about it right now, I can’t actually remember the house numbers of the two before we bought this flat, the street names, yes, but the numbers are gone. I fully understand why companies and even hospitals ask these sort of questions, but when are they going to allow for three things, firstly that there are people who if they tick the yes box, have more than one tiny answer to supply, secondly, that not everyone can write neatly or even in readable small sized character and thirdly, some of us have really, really bad memories and the details they want, just aren’t there, we aren’t trying to hide anything, in fact we would love to remember, but we can’t. I do honestly think that these days they should be more aware of these facts and with most of us having access to PC’s, that they should be able to supply everyone on request an electronic version that can be filled in with ease and returned without cost. There are so many small things like this that have and I suppose will continue to appear, that are so simple to change but would make the world more inclusive to those of us who don’t fit into their small boxes.

I have always been totally open about my health, I personally have never seen any reason to keep any of it a secret, but unfortunately not every one feels that way. I honestly believe that if more of us were happy to simply say to someone, anyone and everyone, “I can’t do this because….”, the world would change for all of us. It is a fact that unfortunately none of us are aware of what life is like for anyone who isn’t medically perfect until we have lost some capability of any sort. I know that because I was just the same unless there was some sort of legal requirement that affected where I worked, I had no idea of the requirements for anyone with any sort of disability, small or large. Now I know that there are millions of us who’s lives could be made just that bit easier, if we just all used the voice we had to ensure that things are changed, not through legislation, but through something far more effective, public opinion. I know in the UK and I don’t see why it should be different anywhere else in the world, that once people are made aware of something if they find the changes aren’t happening, they talk with their feet and use other companies, shops, and venues, who do. These days it is so easy to force action is taken, social media has changed the world when it comes to public opinion having to be listened to, spread the word on Twitter about some company that isn’t living up to expectation and suddenly they change things.

When I started out on Twitter it was to raise awareness of life with chronic illness and being housebound, well with nearly 90,000 followers, I am getting there, but I have still only scratched the surface. I know from the responses I get that most able-bodied people who read my blog hadn’t the slightest idea what it is like to live with a condition like PRMS or Fibro and I am proud that I have opened their eyes to the reality, but there is so much more still to be done, but I can’t do it alone. I just wish that I could convince those with anything from arthritis to Motor Neurons to help educate every company that has something that makes their life harder than it should be, to actually tell them what and why those small changes would make all our lives easier. Legislation make business put in the right doors, lifts and so on, people power can make them change checkouts, forms, placement of furniture, phone services and anything else it might be, but most of all I expect it will be simply attitudes. I don’t blame anyone for the millions of irritations out there, they exist simply because businesses don’t know or haven’t thought about any of it before and the best people to educate them is us, those who want to use their service, but are hindered by the lack of understanding. There is one thing about life businesses always understands and that is making a profit, if they fully understood how many people give them a body swerve because of something they could easily change, they would do it.

I don’t know the numbers of people there are right now out there with a chronic condition and or disability, but if we all worked together rather than small groups within one condition, we honestly could make huge changes, not just to business but to the NHS as well. We just have to be willing to say this is what’s wrong, this is why it’s wrong and this is how simply it could be changed to make it accessible and user-friendly to millions of people who just want life to be accessible, millions who they probably don’t even know have a problem, because so many conditions are invisible.


Please read my blog from 2 years ago today – 24/10/12 – Family Attachments 

I am so tired today, it is one of those days that we all have from time to time, I just don’t seem to be able to get myself going, there is no oomph. I know we all have days when all we really want to do is curl up somewhere soft and warm and just stay there, not sleeping just relaxing. Part of me screams……