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…


Adam didn’t make it home until long after I went to bed, I watched Eastenders and headed straight of to bed, with no struggling to stay awake just so I can spend more time with him. I have wondered often how I would live now if I were alone, one of those “what if’s” none of us really want to think about, but I have I suppose mainly because I write so much and hear so many stories for others who are also living with chronic illness. The thought of being here by myself 24/7 is actually impossible to pull off. I would have to have help whether or not I would want to accept it for all those daily tasks every home needs. I couldn’t get rid of the rubbish for a start, nor clean the house or do the dishes that the dishwasher can’t and changing the sheets, well I would never manage at all. Clearly no one with an health like mine could manage any of the practical things, but the more important part of life, that human contact we need, is much harder to replace. I have spent many years living by myself and as long as you have your health and can get out and about, living alone isn’t a problem in any way what so ever. I have heard people saying how long Sunday was or how depressing Christmas becomes, but I never found any of that a problem. I suppose the fact that I see the days of the week as just that days, changes things totally. The majority of the jobs I have had didn’t observe any day as any different, I just worked, without holidays or time off set to any day or time of year at all. I’ve never understood this strange need that people seem to have in this country to not working at the weekend, I actually loved working then and having 2 days off when everyone else worked, I had shops and social spaces to myself, not heaving with people.

Being by myself just hasn’t been a problem in the past, to work through these thought though I have to do one thing, remove Adam from the picture totally. Living by yourself is one thing, living missing deeply another person is totally another story. So I have to take myself back a few years and move forward from there, could I really manage being by myself, unable to go out and about when I wanted, not being able to socialise, go to the pub or out for a coffee, well I would like to think so. I never really was the type of person who had loads and loads of friends, when I did go out, I usually went out by myself. I was happy to go out for a coffee or a pint and just watch people, I would usually take a book with me, not to read but to fend off those who would approach me for a chat. I didn’t need to talk to anyone, or do anything really special or expensive for me to go home happy and feeling I had had a good time. Even when I would stay at home for days, not going out at all, I still never found myself feeling lonely or wanting to get out of there, the stir-crazy so many others tell me about. So I guess that yes, I probably would be quite content here by myself, most of the time, allowing people in to do what I couldn’t as they would supply those brief pockets of time when I would have someone around, if only to say hello, thank you, good bye. I keep hearing on the TV that loneliness is one of the biggest problems of old age, I can only take a mix of my past life, my everyday life I have now, alone when Adam is working and a knowledge of me as a person, I think I would survive and survive contently. I have never really been sure that lonely really exists, I believe strongly that lonely often really equates to bored, nothing to do and no idea of what you want to do. At some point in my life I must have felt it, but I don’t remember it ever happening, I have never been really bored, I always have something to do, something to keep me not just busy but interested. Once I was forced not to work, I found this and a ton of things on line to hold my attention and interest. I put time in to learning more about the history I love, I discovered new interests and daily I now have more I want to do than I have time for. Yesterday I was alone all day I found myself having to force myself to click my PC off button, so I have half an hour sat in front of the TV, then off again to go to sleep. My life is as busy and as fulfilling as it was when I was part of the rest of the world, going out to work and all the things life brings with it, never did I then have time to be bored, I just made lists of everything I wanted to do but didn’t have the time, some things don’t change.

I am not alone though, I have Adam, here every evening and every weekend, he fills my life with a dimension that those who are lonely don’t have, a person around them who loves them, cares for them and makes them happy. For me to be alone something would have to happen to him, that changes what lonely means, I think that is true loneliness, loosing the person you love isn’t about any of the everyday words that get banded about. Loosing your partner is like loosing yourself and how anyone copes with that, when there is no one else there to help them, that is when I start to understand loneliness. Could I cope with that, I don’t know, I have never had to and I never want to. The English language once again fails us by not really having enough words descriptive enough to separate out the different levels, types and grades of loneliness. You can be as busy as you want, have as many people around you as anyone could ever need, but loose your life partner, I believe you would still be lonely and somehow, always alone. I know from my life experiences, that slowly you do start to return to the life you had, so I expect if you were like me, you would head back into a life of always being busy, I expect it would be those hours you spent together at the end of each day that would be the hard ones, but busy might also grow to be a cure for that to.

So could I cope if I were alone, yes over all I believe I would, at least I believe that I would. I am the type of person who has always refused to be beaten and I doubt this would be any different, as long as I am not bed bound, I would be able to make it through every day, constantly busy from start to end, constantly still making lists of what I still want to do in my life, maybe that really is the secret, well for me at least.