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…

Let me do it

Cameroon and San Marino, just two of the countries from where someone has stopped by to read my blog from in the past 12 hours. I truly love this world where someone like me can be sat apparently isolated from the world, yet thanks to the internet people from countries I have heard of, but know little about, just stop for a moment to read the ramblings of a middle-aged woman. I can’t imagine what it would be like to be housebound without the internet, I know many still are, even the other day there was a comment left by someone who is reading because their Mother has MS and they want to understand what is happening to her more deeply, but she isn’t online, the hours of her day must go on forever. I have to say that it is one of the few things that I thank my first husband for as back in 1986 we had one of the first home PC, nothing like today’s but enough to get me interested. Anyone who had a PC back then also had the whole idea that you could break it with just a touch, also removed as if you wanted to do anything, you first had to program it, probably why when it came to the point that I needed my PC to do much of my work for me, programming was a natural step. When I received the final payment from him following our divorce, I purchased my first real PC and I was in just days, online and I never looked backed, from then onwards life without the internet seemed unthinkable. I am not a fan of the new touch screen systems that is everywhere these days and anyone who would like to try and separate me from my baby who despite being five years old now, still purrs and flies as perfectly as the day I bought her and makes life bearable, would find that pain or not, a she-wolf ready to kill. Having said that, I doubt there is a person on this planet who couldn’t very quickly be taught how to use a tablet and I also know without a doubt that it changes lives. I would go as far as to say that if there is anyone out there over the age of 40 who isn’t already using at least a smartphone their families need to take them in hand and teach them to, as one day, through health or age, they will be grateful beyond words that someone taught them. Life is strange that way, I never thought that other than for the birth of my daughter there would be anything I would look back and thank my first husband for, but I just have, I guess we never know what from our past, or our present will actually be the root into our futures.

The bi-weekly shop just arrived, it’s probably the last of the household chores that I still do, not that entering the details into a website and opening the door for the delivery guy to drop it all off in the hallway, is really a chore. Adam has offered several times to take it over but it is something that I hold onto tightly, not just because I know without a doubt that the shopping that would arrive would have most of what we need missing, proved by the fact that over the past 6 months he still hasn’t managed to write a full list, but that more importantly, it is the last thing that I do. I didn’t really notice most of the other household things going, as it was a drip, drip process. First, it was the heavy housework, anything that needed a ladder really, cleaning windows, bringing down and putting back the curtains when they needed washing. Then more and more of the housework, the hardest part of it wasn’t letting him get on with it, but the fact it has never been done or kept at the level I would say is done properly. Pin perfect it’s not, but I did 4 hours of housework daily, yes and holding down a full-time job and still cooking meals daily from scratch, I was an old fashioned housewife, he is a modern male, our personal standards will never match. I went through the same problems with handing over the laundry, other than a couple of my get mad and do it spells, I haven’t seen the laundry basket totally empty for years. It may on first reading this that I am taking an opportunity to take a dig at Adam for not doing it the way I believe it should be done, but I’m not.

All of us have roles in life that without sounding patronising to anyone, they define us, I know many women will be screaming at me right now for implying that housework could possibly define any modern woman, but it does, like it or not, but it also defines a lot of men as well. We are these days truly defined by our value to society, what a paid work lives say about us. I had a highly pressurised job, being the Operations Manager and totally responsible for the actual functioning of the company and call centre, plus supplying all the company reporting it pressure. When you meet someone new they ask “what do you do?” and we always say what our job is, we don’t say all the other things we do, so that is our first definition, our second is when we bring them into our homes and regardless of what our job is, our homes actually show the real us, not just by its style, but also by how we care for it. I have never understood why, but almost everyone who meets me is shocked when they first saw my home, they for some reason never seemed to expect what they saw when they entered my front door. Our homes are us, not just the mental capacity to earn money, they are the windows to the real person, the one that lives inside the persona we show the world and as an ex-manager, I would say the perfect place to interview future staff. A visit to someone’s home shows you how organised they are, how much attention they give to detail and style, whatever their style is. Are they fussy, busy people, or relaxed and laid back, do they have piles of stuff lying around or perfectly organised not just on the surface, but in cupboards and draws as well. Is their home cluttered or positioned and displayed, how much attention do they pay to cleanliness, it is sparse and modernist or comfy and homely, it goes on and on, our homes are the real extension of us. When you see a home in that fashion, to then have it in many ways ripped away from you is painful. Not having my home perfect to me, is as painful as having had part of my amputated and left forever bleeding. It is another daily pain that over the years like all the rest of the pain I live with has become an undertone to my life, that I can do nothing to change. There are millions of people around the world who would love to never have to do housework ever again, I would do anything to just be able to do it once more and to once more see my home pin perfect.

Losing abilities from the tiniest ones to the most major we can imagine, is painful. The first one for me where my dexterity and that for me took away all of my hobbies, as I loved all of the old fashioned handy crafts and my creative DIY. Then went balance, which took the last of the DIY and as my energy vanished slowly everything else did too. Being unable to thread a needle was just as a painful, as not being able to use my wheelchair anymore, the size of the loss as other see it aren’t the way each of us will feel it. If you love doing something, to loose it causes grief, not just because you are losing an ability, but because the truth is, you are losing part of you. And unlike an amputation where the limb is never seen again, most of our losses are there in front of our eyes every minute of every day.


Please read my blog from 2 years ago today – 28/10/12 – Dreams to the future

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……